FALL 2019â&#x20AC;&#x201C;SPRING 2020
GLOBAL HEALTH REVIEW
WHO LIVES WHO DIES
The American Response to the AIDS Epidemic among African Americans & Continental Africans pg. 37 - Debbie Dada
LETTER FROM THE EDITORS FALL 2019 & SPRING 2020 | VOLUME 7
Dear Readers, Publishing this issue has been a process. More than just unforeseen delays, a global health pandemic by the name of COVID-19 uprooted the way so many of us function in our day-to-day lives. Despite all this, we as the 2019-2020 Editors-in-Chief are excited to finally release the Yale Global Health Review’s fall issue. We hope that our publication continues to serve as an initiative for global health discussions, both within and beyond the Yale community. In this issue, you will find articles covering topics from Ebola to eastern equine encephalitis, from AIDS to tuberculosis. More than just diseases, though, this issue also covers the global health implications of mental health, as well as the power of human touch. Even the current state of the global health field is examined through articles tackling emergency contraceptive access, medical ethics, and black infant and maternal mortality rates. These are the issues relevant and pressing in today’s society, and we strive to examine them with a critical eye. This magazine could not have been assembled without the hard work and dedication of our entire team, from the writers and editors to the production and design members. We are sincerely grateful for all of the time they put into conducting proper research, polishing articles, and pulling together design elements to effectively communicate global health information. These conversations also could not have been started without you, the readers, whom we also thank for taking the time to read our works and to ponder the issues at hand. We hope that through our publication, we can better attend to the future together. For more information on global health, please visit our website at yaleglobalhealthreview.com. Better yet, to get involved, send us an email at firstname.lastname@example.org.
All the best, Debbie Dada, Tomeka Frieson, and Antalique Tran OUR TEAM Editors-in-Chief Debbie Dada Tomeka Frieson Antalique Tran Editors Jenesis Duran Jane Fan Tomeka Frieson Sydney Hirsch Lucy Harvey Kamila Janmohamed Erica Lin
Staff Writers Shaan Bhandarkar Vanessa Blas Debbie Dada Kelly Farley Ben Grobman Francesca Maviglia Alejandra Moncayo Julia Spinnenweber Ryan Sutherland Nina Uzoigwe
ABOUT US Production & Design Vanessa Blas Debbie Dada Erica Lin Antalique Tran Katarina Wang
COVER ART From the cover artist, Sophia Zhao: In this cover illustration, I recognize the HIV/AIDS pandemic as a life-changing and life-threatening disease by depicting the characteristic HIV/AIDS solidarity ribbon as a permanent shadow dragging down the pictorial person’s feet. A representation of the virus is suspended in the background and—midst the cold bluegreen tones—resembles biota spreading into the ocean depths, evoking an image of “drowning” in the ever growing HIV/AIDS pandemic. YALE GLOBAL HEALTH REVIEW
The Yale Global Health Review is the premiere undergraduate-run publication at Yale University covering topics in health. We feature original research, thoughtful commentary, and balanced reporting with a global health focus. Our goal is to bridge scholarship and practice, connect students and faculty, and bring together voices from across a spectrum of disciplines and sectors. The YGHR is a hub for discussion and engagement on all issues relevant to global health—in print and online, at Yale and beyond. SPONSORS We would like to thank the Yale Global Health Leadership Institute, Yale Global Mental Health Program, Yale China, the Yale School of Public Health Admissions Department & the Yale Undergraduate Organizations Committee for their support.
CONTENTS THE HYPOCRISY OF HIPPOCRATES
THE STATE OF THE FIELD
Ethics from Medical Oaths Shaan Bhandarkar
Legislation Addressing Disparities in Birth Outcomes and Maternal Mortality among Black Mothers and Infants Ryan Sutherland
EXPANDING EMERGENCY CONTRACEPTIVE ACCESS
O N SE T O T H
An Exploration of the Pros, Cons and Current Conversation on a U.S. and Global Scale Ryan Sutherland, Francesca Maviglia, Alejandra Moncayo, Julia Spinnenwebte
WHO LIVES WHO DIES
T HE A M ER IC
Returning to the Disease that Never Disappeared Kelly Farley
M A ON AN S ND G C I R CO AFRICAN AME ICAN R NTIN ENTAL AF Debbie Dada
HUMANITARIAN CHALLENGES IN THE CONGO’S EBOLA EPIDEMIC
How Climate Change may be Fueling Them Vanessa Blas
33 VOLUME 7
THE POWER OF HUMAN TOUCH Nina Uzoigwe
An Analgesic in an Impossible Time Shaan Bhandarkar
MODELLING EQUITY IN GLOBAL HEALTH
Using Participatory Action Research to Bridge the Gap Between International Agencies and People in Southern Africa Sam Brakarsh
THE COVID-19 PANDEMIC ISN’T THE ONLY OUTBREAK WE NEED TO FACE Vanessa Blas
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By Shaan Bhandarkar Ethics from Medical Oaths
The Hypocrisy of Hippocrates
Wikimedia Commons The Hippocratic Oath, from its original Greek translation to its modern interpretations, has remained as a powerful symbol of medical ethics.
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ong before the horrors of Tuskegee and Mengele, medical ethics claimed a center stage in the world of healing dating back to the times of Ancient Greece. Throughout the Classical era, patients reserved a comparable trust in both faith healers and the more traditional practitioners, who received training from other established practitioners at famous ancient medical schools. One such renowned practitioner and mentor, Hippocrates, developed an oath for his students to recite after the completion of their training. Today, the Hippocratic oath has visibly shaped numerous aspects of the expected conduct and behavior of physicians. The Hippocratic oath is widely recognized by historians as the first-ever delineations of medical ethics.1 In fact, 56% of medical schools still use some version of the Hippocratic oath to this day.2 This oath immortalized the idea of non-maleficence or (more famously) “do no harm.” Doing no harm to a patient certainly seems like an easy rule for the whole healthcare gig. But what about inadvertent harm caused by an experimental therapy, the side effects of which were unknown to the overseeing physicians? Further questioning its representativeness of modern medical values, the oath presents some troublesome clauses around controversial issues like euthanasia and abortion. Can some 2,500-year-old document written in a time of limited medical knowledge really apply to the world we live in today? Understanding why the Hippocratic oath was written in the first place can clarify why we do or do not need it today. As mentioned before, the ancient healthcare “marketplace” offered a variety of options from exorcists to faith healers to the practitioners educated at renowned medical schools.3 Hippocrates and his fellow scholars belonged to one such school in Greece: Cos. With his oath, Hippocrates intended to uphold the school’s prestige and reputation by creating a sort of closely-knit “clan” of physicians. While the endeavor may seem nepotistic today, Hippocrates developed a vocational system of education where a trained physician would swear to teach the sons of his medical mentor at Cos and so on. Even before the times of Hippocrates, Greece valued their healers as worthy of claiming a lineage under the healing god
Asclepius. Greek society worshipped these healers as the “Asclepians” and Hippocrates sought to revitalize this social perception with his own clan of physicians. This would especially prove crucial as ancient physicians would be vehemently competing with magical or spiritual healers for clients. Hippocrates aimed to endow medicine with legitimacy and some feel that his attempt at medical ethics served as a means to garner public confidence. Why else have a medical oath for a supposedly seclusive “clan” of healers be known so publicly? Regardless of whether or not Hippocrates’s aims were altruistic, his connotation of medical ethics serve to reflect the ideas held by the physicians of his time. Furthermore, the corpus of works the Hippocratic oath is published under (known as the Hippocratic corpus) has been known to have different authors. Even though Hippocrates serves as the face of the works, evidence points to multiple contributors collaborating to create the corpus. Among the troublesome aspects of the oath, the oath has religious allusions to the Greek gods associated with healing including Apollo, Asclepius, Hygeia among others. Hippocrates is supposedly known for divorcing medicine from non-empirical faith healing, but it’s understandable how Hippocrates included these allusions to conform to expectations about Greek religion, which was so infused in common Greek culture. The passages in the Hippocratic Oath most cited as controversial refer to “not giving a lethal drug to any patient” and “not giving a women a pessary to cause abortion.”4 The first clause about lethal drugs is superficially justifiable as being a natural conclusion from the idea of non-maleficence. If a doctor’s responsibility is to do “no harm,” why would giving a lethal drug even be up for debate? One representative facet of medicine focuses on the idea of pain and the obligation for a physician to reasonably attempt to ease the pain of the patient. Especially for patients deemed terminally ill, the term palliative care is used to refer to the health plans associated with ensuring the best end-of-life care for the patient in question. The debate around end-of-life care, especially euthanasia, have incited heated debates in modern medicine. Dr. Jack Kevorkian (notoriously nicknamed “Doc-
Can some 2,500-year-old document written in a time of limited medical knowledge really apply to the world we live in today?
Wikipedia Louis Lasagna created the modern Lasagna oath that pledges to treat patients as suffering individuals, as opposed to defining them with mere lists of symptoms.
tor Death”) championed the cause of physician-assisted suicide, promoting the idea of patients having a right to die.5 The 2005 case of Teri Schiavo, a patient in a persistent vegetative state, and the dispute between her husband and her parents about the removal of her feeding tube furthered awareness about the right to die.6 Since Schiavo herself could not give consent due to her condition, her case complicated the question of what a doctor’s prerogative should be in such a situation. A physician’s decision to assist in voluntary euthanasia heavily depended on the patient’s consciousness and mental competency. In one of the works of the corpus outlining the expected conduct and behavior of a physician known as Decorum, the Hippocratics actually encourage a physician to ignore the opinion of the patient as their ailment could cloud their judgement.4 The debate around euthanasia is still far from over with some suggesting policy reforms about ensuring second opinions on terminal diagnoses and for more specialized medical training programs that focus on delivering end-of-life medical considerations and potential euthanasia. Euthanasia strikes at the very ethical core of a physician’s devotion to doing no harm and perseverance in undertaking a medical career, so an oath including an oversimplification of the issue does not seem to be applicable. In addition, the oath’s attitude on abortion also seems, at least superficially, very resolute. It is admittedly hard to interpret the true stance of the Hippocratics on abortion due to the development of safer procedures in the modern era. Surgical procedures for abortion did exist in 5th century BCE, but the Hippocratic oath nevertheless expresses a hesitation
clause so that a doctor could not permit considerations of race, sexual orientation, or social standing (among many other factors) to affect the quality of care and their duty to treat.9 This was especially monumental considering the Hippocratic oath’s inclusion in the social context of slavery in ancient Greece. An unwritten tradition in ancient Greece for oath violations would demand no punishment if a dying patient was the slave as opposed to heavy punishments if the patient was “of noble birth.”
Flickr The recital of the Hippocratic Oath is a long-cherished tradition for medical students to this day.
for surgery. As a part of the “do no harm” idea, the Hippocratic oath includes a vow to “not cut, even for [gall] stones.”4 However, the Hippocratic oath does include a clause saying to leave the cutting to the practitioners with a specialty in carrying out such procedures. Another work in the Hippocratic corpus, On the Nature of Child, explains how to conduct one such procedure as well as other concoctions for supposedly terminating a pregnancy. Modern and past critics argue about the exact interpretation: the oath could be advocating for a general ban on abortion or a specific ban on the use of a pessaries in abortion. Still, the oath does again seem to simplify a major debate as a corollary of non-maleficence. That’s not to say that excluding any verse about abortion or euthanasia would be the most beneficial option. Their inclusion in the Hippocratic oath merits discussion and acknowledgement of how these issues apply to modern medicine. However, the Hippocratic oath in its historic version is certainly not the most ideal option for recital. Interestingly enough, the Hippocratic oath did indeed disappear from medical school ceremonies globally for centuries.7 Aside from its use in medical history, the Hippocratic corpus offered explanations such as the humoral theory (the body being composed of four humoral fluids including
blood and phlegm) that would be declared as pseudoscience in modern times. A greater public consciousness of medical ethics did however resurge after World War II. As the Nuremberg trials witnessed some of the first-ever institutions of international law in dealing with the former Axis powers, one of the most notorious trials included the trial of Nazi doctors stationed at concentration camps. These doctors, including the notorious Josef Mengele, obviously dismissed any idea of patient consent and ruthlessly carried out medical experiments on prisoners and even sickly civilians in the name of eugenics. Nazi eugenics perverted any semblance of “medicine” involved and even called the initiative the “Euthanasia Program” to mask its true purpose.8 The Japanese were also found to have experimented on Chinese captives. The Japanese Imperial Research program sought to develop weapons of biological warfare with agents like cholera and plague with over 200,000 Chinese killed in the process.1 The Japanese even conducted “practice surgeries” on live Chinese prisoners without anesthesia. These atrocities prompted the formation of a World Medical Association (WMA) in Geneva and declarations for the creation of an international physician’s oath. The major addition in the 1948 Geneva WMA Physician’s Oath included a non-discriminatory
Euthanasia strikes at the very ethical core of a physician’s devotion to doing no harm and perseverance in undertaking a medical career, so an oath including an oversimplification of the issue does not seem to be applicable.
All these advances are not to say that the world magically inherited a universally-abided code of medical ethics. Even with the guise of increased ethical deliberation in medicine, the U.S. actually granted immunity from prosecution to the Japanese experimenters for their data on biological warfare. Aside from that, the Nuremberg trials really only focused on the vices of the Axis side with minimal accountability for war crimes committed by the Allied forces. The atomic bombs most certainly had a devastating effect on the communal health of Hiroshima and Nagasaki for generations afterwards due to the radiation exposure. It’s also noteworthy to consider the medical advances made due to the increased resources allocated to research beneficial for warfare. The discovery and mass production of penicillin was vital to World War II efforts. It may seem antithetical to some that medicine is most advanced in war where “doing harm” abounds. We cannot oversimplify the matter and conclude that wartime medical research is unethical. However, an increased focus on using medical research to gain advantages in combat can facilitate immoral acts, as has been witnessed in the past. World War II highlighted a peak for medical immorality, which justifiably coincided with an overall global trust in medicine, especially for the American public. The trend of specialization in medicine in the 50s also created an increased belief that medicine became a commercial profession.7 Patients believed that they were being thrown from one doctor to the next, without personalized care. Medicine seemed to become synonymous with taking advantage of a patient instead of the selfless care alluded to all those centuries ago in the Hippocratic oath. In response to this public distrust, the recitation of the Hippocratic oath resurfaced in American medical communities in the 1960s. Dr. Louis Lasagna created a revision of the Hippocratic oath to emphasize the compassion of the patient. The “Lasagna oath” addresses the issues of abortion and euthanasia by promising to treat such issues with “humility.” The Lasagna
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United States Holocaust Memorial Museum The Nuremberg Doctors’ Trial lasted from December 1946 to August 1947. The revelations of the Nazi doctors’ atrocities incited a greater international awareness to the ability of medicine to be perverted.
oath creates an admirable social image of a physician not treating a medical chart, but a breathing human being as their patient. Lasagna also deftly counters the commercial perspective of medicine. He depicts medicine not as some reductive feat that regards a patient as a medley of symptoms, but as a humanizing and empathetic experience. The Lasagna oath and its revisions seem to be the most predominant in current recitations from medical school students aside from individual oaths written by the schools themselves. Yet, some healers throughout history have believed Hippocrates’s oath to be riddled with ethnocentrism and assumptions of conformity to Greek (or generally Western culture). Ayurvedic healers take the Charaka oath, named after the founder of ayurvedic medicine, Acharya Charak. Charaka actually created his charter for medical ethics supposedly two centuries before Hippocrates ever created his oath. As per modern standards, it is fair to say that Hippocrates’s major contribution of the
humoral theory is as much pseudoscience as anything else. The Charaka oath actually refers to the ideas of humility and compassion that Lasagna features in his oath. With no overt statements on euthanasia or abortion, it can be argued that the Charaka oath should have been the paradigm for medical ethics in the first place despite its other religious allusions (which the original Hippocratic oath technically contained as well).
already provides a firm international standard for physician conduct, so the recitation of a single medical oath upon the completion of medical school is not necessary. However, the practice of indulging in conversation about medical ethics at medical schools is a necessity. Both aspiring physicians and current physicians owe at least that much to the history of suffering and pain hidden in the leaves of our medical texts.
But, in the context of medical ethics, which oath to swear upon is a matter of personal choice. Who to swear to—the patients—is the constant that binds all approaches to healing across the world. It’s naive to think that any oath will ensure a persistent conformity to the values it espouses. Even after the encouraging discussion of the Lasagna oath in American medical schools in the 60s, the Tuskegee experiment (persisting through the 70s) featured an atrocious perversion of medical values by withholding treatment from the African-American syphilis patients for the purpose of the study. The WMA Geneva Oath
www Shaan Bhandarkar is a first year in Morse College from Potomac Falls, Virginia and aspires to major in Psychology, on the Neuroscience track. Shaan deeply believes in the merits of communication and journalism in healthcare and that health is a dialogue, not a monologue. With this mantra, he wishes to make a difference in alleviating the stigma around sensitive issues like mental health and end-of-life care. In addition to YGHR, Shaan is currently a community health educator in mental health for local high schools and volunteers at the Connecticut Hospice. He can be reached at email@example.com.
Tuberculosis Returning to the Disease that Never Disappeared By Kelly Farley
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ne third of the world’s population is infected with a latent form of it.¹ Without treatment, 50% of those with the active form will die.² We have a cure. And yet every day 5,000 people die of tuberculosis (TB).² Background TB is an infectious disease caused by the bacterium Mycobacterium tuberculosis.³ A patient can have either dormant (known as “latent TB”) or active TB. Latent TB affects 2 billion people,⁴ while active TB affects 10 million.⁵ In latent TB, the body’s immune system is strong enough to keep the bacteria in check; there are no symptoms, and, unlike active TB, the disease cannot be transmitted to others.³ An estimated 5-10% of latent TB infections progress into active TB, if the patient is immunocompromised and the bacteria may multiply uncontrollably.⁶ Active TB is transmitted when a person infected with active TB coughs or talks, spreading the bacteria into the air.⁷ Contrary to the stigma surrounding the disease, TB is not extremely
contagious; infection requires prolonged exposures in enclosed environments, such as households, workplaces, prisons, or schools.⁸ TB primarily affects the lungs, though it can spread to the kidneys, spine, and brain.³ This can lead to symptoms such as a persistent cough, coughing up blood or sputum, chest pain, fatigue, and fever.⁹ History In the Western world, TB is thought of as a disease of the past. In the United States, it is; the overall TB case rate is 2.9 cases per 100,000 persons,10 meaning that the percentage of people presenting with TB is less than 0.003%. Yet, just 200 years ago, TB – known as “consumption” at the time – was widespread in Western Europe and North America.11 In 1900 through 1980, the rate of TB in Western Europe and the United States decreased to 1/100th of the previous level, mainly because of improvements in hygiene and living conditions.11 As the average number of people living in one room declined from eight to one or two, the amount of TB cases also declined.12 As HIV spread in the 1980’s, TB levels again increased. Those infected with HIV are 30% more likely to develop active TB because of their weakened immune systems.4 Initially, the medical community largely ignored the problem – which is why Dr. Lloyd Friedman, a clinical professor of medicine at the Yale School of Medicine and a pulmonary critical care specialist at Yale-New Haven Hospital, was drawn to studying it. In his words, TB has always been the “underdog.”13 From 1984 through 1992, Dr. Friedman followed the incidence of HIV and TB in substance abusers in New York and found that “the rates of tuberculosis, AIDS, and death are extremely high.”14 However, the outbreak was quickly controlled because of the developed health infrastructure in New York City.13 This was not the case in developing, lowincome countries. In 1993, the World Health Organization (WHO) officially declared TB a global emergency as rates skyrocketed alongside those of HIV.4 In 2014, the WHO committed to ending TB by 2030.15 In 2018, it is still a global emergency without much progress towards ending it by 2030. As Dr. Ted Cohen, an associate professor of epidemiology and an infectious disease epidemiologist at the Yale School of Public Health,
VOLUME 7, NO. 1
NIAID Mycobacterium tuberculosis, imaged aboved using a scanning electron microscope, is the bacteria that causes tuberculosis disease.
explained, “Tuberculosis is a disease of poverty.”16 In developing countries, living conditions are more compact and enable the disease to spread much faster.16 In addition, people in developing countries are more susceptible to developing active TB because of the weakened immune systems that accompany malnutrition.16 In South Africa, one of the countries with the highest burden of TB, 80% of the population is infected with latent TB and 0.8% develop active TB.17 The incidence of TB in South Africa is 250 times that of the United States.1 The risk of disease is highest in infants, lowest in children until 10 years of age, and then rises during adolescence and remains high.1 The disease is two times more common prevalent in men than women because men tend to work outside of the home and are thus exposed to more bacteria.18 Diagnosis in the Community Setting In the opinion of Dr. Luke Davis, a pulmonary critical care physician at Yale-New Haven Hospital and an associate professor of epidemiology and medicine at the Yale School of Public Health, TB research should prioritize the four million undiagnosed cases; diagnosis is important and also easiest to fix.18 In a 2017 study of TB diagnosis in the community setting (i.e. outside of clinics), Dr. Davis analyzed the dropout rates associated with the four steps of TB diagnosis: 1) scheduled home visits;
We have a cure. And yet every day 5,000 people die of tuberculosis.
A more significant cause of TB antibiotic resistance is that patients stop their antibiotics before the course of treatment has finished.
2) initiated house visits; 3) TB screening; 4) further TB evaluation.19 Ultimately, there is a 5% probability that a person completes all 4 steps of the pathway, meaning that many patients go undiagnosed.19 The biggest dropout rates were steps two and four. 50% of patients made it through step two.19 In the other 50% of cases, the patient is no longer located at the same address for a variety of reasons – perhaps because he/she had to move elsewhere so that family could care for him/her, because he/she was exiled from the home because of the disease, or because he/she had to give up the home after losing a job due to TB.19 Only 20% of patients make it through step four, potentially because of the cost and difficulty associated with going to the clinic for further TB evaluation.19 Knowing where the issues with diagnosis stem from enables interventions to improve diagnosis, such as home visits followed by a phone call instead of a clinic visit, community education about TB, minimizing the stigma associated with TB, and increasing trust between health workers and patients.
ics to avoid antibiotic resistance.20 Nevertheless, since antibiotics are the primary method used for treating TB, antibiotic resistance still poses a problem for its treatment, especially since patients do not always finish their course of antibiotics.21 Multidrug-Resistance TB is resistant to the most common treatments and accounts for about 5% of all TB cases.1 Extensively Drug-Resistant TB is rarer but particularly worrisome because it is also resistant to two more drugs.21
Treatment and Antibiotic Resistance
Because typically only one antibiotic is used for preventive TB therapy, there have been concern about whether preventive therapy should be used if it may increase the likelihood of antibiotic resistance. However, Dr. Cohen’s 2016 mathematical modeling of TB suggests that the benefits of preventative therapy outweigh the risk of antibiotic resistance, particularly in countries like Botswana where the rates of TB have been declining.22 In general, TB rates worldwide have been declining as HIV treatment improves, implying that preventive therapy should be more widely used.
Currently, latent TB can be treated with a 9-month regimen of one or two antibiotics that kills actively replicating mycobacteria.20 Active TB is treated with a 6-month combination of four antibiot-
A more significant cause of TB antibiotic resistance is that patients stop their antibiotics before the course of treatment has finished. TB treatment requires 6 months of antibiotic treatment because TB is not
always actively dividing.18 But, like with other diseases, patients tend to stop taking medications when they feel better.18 Patient education efforts primarily revolve around the disease itself and do not include information relevant to the patient’s daily life, such as how to remember to take it daily, where to get refills, and how to cope with stigma from the community.18 The cultural stigma surrounding TB is strong enough to dissuade patients from traveling to the clinic to be diagnosed and more than strong enough to dissuade patients from continuing to take their medication for months on end. In developing countries, TB is associated with unsanitary conditions and poverty.12 Since TB is transmitted through the air, there is also a misconception that TB is highly contagious, which further adds to the stigma.18 Dr. Davis remembers how the brother of a clinician in Uganda hid his pills instead of taking them and ultimately died of TB.18 New Developments Dr. Friedman believes that our hope for decreasing TB lies in vaccines, which have prevented many infectious diseases, past and present.13 The current Bacillus Calmette-Guérin vaccine is primarily used in infants who have not yet been exposed to TB.1 98 years since its invention, we finally have hope for a TB vaccine that could also be given to patients with latent TB. On September 27, 2018, the results of the phase 2b trial of the M72/ As01E candidate vaccine was published
1000 100 10 0
The estimated prevalence of tuberculosis per 100,000 people in 2007 per country is highest in Africa and Asia and lowest in the Western world.
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Tuberculosis is a disease of poverty.
and showed 54% efficiency.23 According to Dr. Friedman, this new vaccine is efficient because, “One, you only have it give it once and it works. Two, it works on latent disease. Three, it will work for drug resistant organisms.”13 The ability to target latent disease is key, since 80% of new cases are derived from the latently infected pool, and would allow us to drop the rate of TB much faster than current methods.13 Nevertheless, this vaccine lacks funding. Because it will be primarily used in low-income countries, pharmaceutical companies are hesitant to invest in its clinical trials.13 Currently, the vaccination lacks the funding to progress to a phase 3 trial.13 On September 26, 2018, the United Nations (UN) held its first high-level meeting on TB, bringing much needed attention to the disease and beginning to remove the years of stigma.24 The meeting’s theme was “United to end tuberculosis: an urgent global response to a global epidemic.”24 The meeting identified TB as an urgent matter affecting all countries. But some have questioned whether the goals established by the meeting will ever actually be achieved. The International Union Against Tuberculosis and Lung Disease criticizes the lack of accountability established by the UN.25 Only poor nations are affected by TB; only rich nations have the power to fix it.
The Future The global community should clearly invest in TB treatment because of the 5,000 people this curable disease kills every day. As Dr. Davis explains, these 5,000 people represent “the most marginalized people in every community.”18 These are the people living in poverty, commonly with HIV, in countries that are all too frequently overlooked. There are also health and even economic incentives to intervention. In Dr. Cohen’s words, “Tuberculosis does not respect borders.”16 As an infectious disease, TB can spread globally; if the deaths in other countries are not a pressing enough reason for intervention, then countries may consider their own risk of TB infection. Additionally, treatment prevents people from fleeing, leading to social and economic stability in a country and worldwide.18 When asked if we will be able to meet the WHO’s goal to end TB by 2030, all three Yale researchers/professors interviewed immediately responded, “No.” Right now, curing TB is not the priority. It is controlling TB – quickly. As Dr. Cohen put it, “The bar is low for saving lives.”16 So many people are affected by TB that any intervention at all will save so many lives. There is work to be done and a difference to be made.
The bar is low for saving lives.
Torange.Biz Treatment of tuberculosis is extensive, requiring a 9-month regimen of one or two antibiotics for latent TB or a 6-month regimen of four or more antibiotics for active TB.
www Kelly Farley is a sophomore in Morse College studying Chemistry and Statistics & Data Science. She may be contacted at kelly.farley@ yale.edu.
WHO The first-ever UN General Assembly high-level meeting on tuberculosis was held in September 2018, bringing together over a hundred participants from all over the world.
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The State of the Field Legislation Addressing Disparities in Birth Outcomes and Maternal Mortality among Black Mothers and Infants By Ryan Sutherland
recent study by the Organization for Economic Cooperation and Development found that among the top economically developed nations, the United States ranks first for child mortality and 47th in the world among all nations for maternal mortality.1 More than 50,000 American mothers each year will experience life-threatening, pregnancy-related complications and two women will die each day in childbirth resulting in over 700 annual pregnancy-related deaths. A Centers for Disease Control and Prevention (CDC) report determined that 60% of these maternal deaths were preventable.2 While public health reforms have greatly reduced historical rates of infant and maternal mortality globally, the United States has experienced an increase in maternal deaths in the last decade. Moreover, maternal mortality rates and differences in birth outcomes vary demographically—very low infant birth weight (VLBW), high rates of preterm birth (PTB), the elevated prevalence of infant mortality (IM) and high rates of maternal mortality (MM) disproportionately affect non-Hispanic Black women and their children and represent clear racial and ethnic disparities in birth outcomes in the United States. These disparities must be addressed.3 Specifically, addressing medical practitioner bias and widespread systemic racial discrimination, mitigating environmental and social stressors, eliminating barriers to care and enacting new culturally-informed policies to increase access to high quality health care, lower cost insurance, maternal education, nutritional food and affordable housing for Black women is imperative to help address this racial disparity in maternal and child health.
More than 50,000 American mothers each year will experience life-threatening, pregnancyrelated complications and two women will die each day in childbirth. 60% of these maternal deaths are preventable.
In order to accomplish these goals, urgent national policy reform is needed to address the issue of disparities in birth outcomes among Black mothers in order to improve maternal and child health. While the recent passage of H.R. 1318, the Preventing Maternal Deaths Act/ S. 1112, the Maternal Health Accountability Act (Public Law No: 115-344) and H.R. 6085/S. 3029, the PREEMIE Act (Public Law No: 115328) represent important legislative steps toward addressing these issues, more can be done to ensure the safety and health of Black pregnant women and their children. Several bills that are important for supporting maternal and child health were not enacted in the 115th Congress (2017– 2018) and have not yet been reintroduced in the 116th congressional session (2018– 2019). Moreover, several that have been reintroduced before the 116th congressional session have not yet been passed into law. H.R. 5761, the Ending Maternal Mortality Act to establish the National Strategy to Combat Maternal Mortality; S. 3363/H.R. 6698, the Maternal CARE Act; and S. 3494, the Maximizing Outcomes for Moms through Medicaid Improvement and Enhancement of Services (MOMMIES) Act were not enacted during the 115th Congress and have not been reintroduced in the 116th congress. H.R. 5977 (115th), the MOMMA’s Act has been reintroduced as H.R. 1897, the
MOMMA’s Act, in the 116th congress by Rep. Robin Kelly (D-IL). S. 3392 (115th), the Modernizing Obstetric Medicine Standards (MOMS) Act has been reintroduced in the 116th congressional session by Sen. Kirsten Gillibrand (D-NY) as S. 116, the MOM’s Act. Senator Elizabeth Warren introduced a plan to address maternal mortality among black mothers by linking quality of care delivery to provider and healthcare facility incentives.
These bills and plan coincide closely with the goals expressed in Healthy People 2020 to reduce maternal mortality, infant mortality, low birthweight, and preterm births among all Americans. If passed into law, these acts will continue to support women’s maternal health and to address disparities in birth outcomes.4 These bills are described in more detail below. Furthermore, supporting future Connecticut state bills similar to SB 304: An Act Establishing A Maternal Mortality Review Program And Committee Within The Department Of Public Health in the Connecticut State Legislature that was passed into law in 2018 (Public Act No. 18-150) is important to guarantee funding and resources for an evidence-based review of statewide maternal mortality rates. African American voters make up approximately 9% of Connecticut’s population and 13% of the national population and depend on policymakers and constituents to improve maternal and child health and wellbeing at both the state and national levels. Background Higher rates of very low infant birth weight (VLBW), preterm birth (PTB), infant mortality (IM) and maternal mortality (MM) disproportionately affect non-Hispanic Black mothers and their children and represent clear racial and ethnic disparities in birth outcomes and maternal health in the United States.3
Wikimedia Commons Front of the Centers for Disease Control and Prevention Museum in Altanta, Georgia.
In 1850, United States census data estimated the infant mortality rate among Blacks to be 353 deaths per 1000 live births compared to 217 deaths per every 1000 live births for Whites.5 Because of improvements
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in hygiene and sanitation at the turn of the 20th century, this rate continued to decline into the 21st century; however, Blacks have always had a higher infant mortality rate than Whites. Margaret Heckler, former Secretary of Health and Human Services, chaired the 1985 Report of the Secretary’s Task Force on Black and Minority Health that extensively outlined racial and ethnic disparities in health and helped bring these issues national attention.6 In response to this report, the Centers for Disease Control and Prevention (CDC) started the Pregnancy Mortality Surveillance System in 1986 to determine trends in maternal and child mortality, measures used as proxies to estimate national healthcare quality. Presently, Black mothers are three to four times more likely than White mothers to die in childbirth regardless of socioeconomic or educational status and 11.4 infants before the age of one year die per 1,000 live births among non-Hispanic Black mothers, a rate that is double that of non-Hispanic White mothers.7 Although infant mortality rate (IMR) for Black infants declined from 2005 to 2012 paralleling decreases among infants of all races, Black IMR has increased in the past half-decade while White IMR continues to decrease. These gaps represent a disturbing pattern that urgently needs to be addressed: Black pregnant women and Black infants are dying at higher rates than women and infants of other races. Many factors contribute to the maintenance of this trend. Variable access to insurance and quality medical care centers, and a higher rate of Cesarean sections among Black women partially accounts for the disparity in birth outcomes. Only 23% of Black patients—compared to 63% of White patients—gave birth in safer-rated hospitals, and the same study showed that the quality of hospital accounts for nearly 50% of disparity in birth outcomes.8 Additionally, low-risk Black mothers were more likely to have unnecessary Caesarean section than Whites, a procedure usually reserved for high-risk pregnancies.9 This invasive surgical procedure puts Black mothers at a higher risk for death and medical complications, especially when performed at lower quality hospitals.10 Moreover, a lack of insurance is
a motivating factor in the selection of lower quality hospitals and results in higher rates of negative birth outcomes: uninsured neonates have a higher risk of death and illness than those who are insured.11 The Kaiser Family Foundation notes that 11.7% of Blacks are uninsured (as compared to 7.6% of Whites), putting Black neonates at an increased risk of mortality and morbidity.12 However, in states that expanded Medicare under the Affordable Care Act, infant mortality rates were reduced 50% more than in states that did not expand coverage.13 Several further explanations that account for this difference in birth outcome cite environmental, behavioral, social and genetic risk factors. Higher rates of environmentally and genetically-influenced chronic and acute health conditions (heart disease, diabetes, inflammation, etc.), environmental stress due to poverty and unsafe living conditions which can in turn influence cigarette, drug and alcohol use, low rates of exercise, higher exposure to pollution and chemicals in highly-segregated, densely-populated and poor neighborhoods, as well as poorer nutrition and higher rates of obesity during pregnancy lend to negative birth outcomes among Black women.14,15 Pregnancy-related hypertension, also known as pre-eclampsia, is one of the leading causes of death of Black pregnant women and is 60% more common and more severe within this population.16 Furthermore, lower socioeconomic status coupled with systemic barriers preventing access to prenatal and postnatal care (lack of transportation, insurance, maternal education, etc.) also puts Black women and their children at higher risk of death or negative birth outcomes.17,18 Finally, internalized, institutional (medical), and personally mediated racism and persistent sexism offer more nuanced explanations for these disparities in birth outcomes, and have prompted the United Nations to call on the United States to “eliminate racial disparities in the field of sexual and reproductive health.” Consistent minority stress results in “weathering,” a term coined by Arline Geronimus to describe the process by which low socioeconomic status and persistent discrimination
congress.gov H.R. 1897, the MOMMA’s Act, was reintroduced in the 116th Congress on March 27, 2019.
cause marked health declines in African American women, and this affects birth outcomes and maternal health.19 For example, the Black Women’s Health Study found that consistent discrimination and minority stress correlates with the presence of fibroid tumors, maternal bleeding, and low birthweight infants among pregnant minority women.20 Systemic prejudice and social stigmatization within and beyond the clinic must urgently be addressed through policy reform in order to address gaps in infant and maternal mortality and wellbeing. Overall, differential birth outcomes among Black women are a consequence of complex and interlocking social, behavioral, environmental, and genetic risk factors coupled with systemic racism and sexism. Several pieces of legislation have been introduced to the House and Senate and can have a profound impact on maternal and child health disparities within and beyond the Black community. H.R. 5761 (115th), the Ending Maternal Mortality Act to establish the National Strategy to Combat Maternal Mortality; S. 3363/H.R. 6698 (115th), the Maternal CARE Act; S. 3494 (115th), the Maximizing Outcomes for Moms through Medicaid Improvement and Enhancement of Services (MOMMIES) Act; H.R. 1897 (116th), the MOMMA’s Act; and S. 116 (116th), the MOM’s Act, promote research and evidence-based maternal education, and continue to support women’s maternal health and address disparities in birth outcomes among Black mothers.
Black mothers are three to four times more likely than White mothers to die in childbirth regardless of socioeconomic or educational status, and 11.4 infants before the age of one year die per 1,000 live births among non-Hispanic Black mothers, a rate that is double that of non-Hispanic White mothers.
Status and Bill Summaries The passage of H.R. 1318, the Preventing Maternal Deaths Act (incorporating S. 1112, the Maternal Health Accountability Act) as Public Law No: 115-344 will have a pronounced impact on Black mothers and infants, and will improve general maternal and child health nationwide. Organizations including the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians, the Association of Women’s Health, Obstetric, and Neonatal Nurses, and the Preeclampsia Foundation supported this piece of bipartisan legislation. Bill/Plan Summaries S. 1112/H.R. 1318, Preventing Maternal Deaths Act (became Public Law No: 115-344 on December 21st, 2018): “To support States in their work to save and sustain the health of mothers during pregnancy, childbirth, and in the postpartum period, to eliminate disparities in maternal health outcomes for pregnancy-related and pregnancy-associated deaths, to identify solutions to improve healthcare quality and health outcomes for mothers, and for other purposes.”21,22 H.R. 5761, Ending Maternal Mortality Act (not enacted in 115th congress, not reintroduced in the 116th congress): “To direct the Secretary of Health and Human Services to submit to the Congress on a biennial basis a national plan to reduce the rate of maternal mortality.”23 S. 3363/ H.R. 6698, Maternal CARE Act (not enacted in 115th congress, not reintroduced in the 116th congress): “A bill to support States in their work to end preventable morbidity and mortality in maternity care by using evidence-based quality improvement to protect the health of mothers during pregnancy, childbirth, and in the postpartum period and to reduce neonatal and infant mortality, to eliminate racial disparities in maternal health outcomes, and for other purposes.” S. 3392, Modernizing Obstetric Medicine Standards (MOMS) Act (not enacted in the 115th congress): “Authorize and expand the Alliance for Innovation on Maternal Health (AIM) Program at HHS through 2023; Create a grant program to help states and hospitals implement the maternal safety best practices; Improve reporting on pregnancy-related and pregnancy-associated deaths and complications. HHS will encourage states to voluntarily submit a yearly report with findings from a state Maternal Mortality Review Committee (MMRC) on maternal deaths.”24
KEY CONSIDERATIONS: FACT SUMMARY
▪ In Connecticut, there were 8 pregnancy-related deaths between 2011–2014. Data for 2014–present has not yet been released. These data only record deaths in hospital settings, and do not fully demonstrate pregnancy-related deaths within a year after birth. More research needs to be done on this topic to address the impacts of health disparities on women post-delivery.30
▪ 11.4 infants before the age of one years old die per 1,000 live births among non-Hispanic Black mothers in the United States, a rate that is double that of non-Hispanic White mothers. ▪ Black mothers are three to four times more likely than White mothers to die in childbirth regardless of socioeconomic or educational status.7 ▪ Although educational status is protective for White pregnant mothers (higher educational attainment corresponds with a lower risk for infant mortality), Black mothers receive no similar protective benefit. In fact, those with higher education might be at greater risk for pregnancy-related complications.31 ▪ Black infants are twice as likely as White infants to be born significantly underweight.32 ▪ One in six black infants are born preterm in the United States. Premature delivery is three times higher among Black mothers than White mothers and puts children at significant risk for a lifetime of potential health issues and medical expenses. The Institute of Medicine estimated that preterm births cost the United States $26 billion annually in healthcare costs and imposes significant financial and emotional strain on families. ▪ Only 23% of Black patients—compared to 63% of White patients—gave birth in safer-rated hospitals. Hospital quality accounts for nearly 50% of disparity in birth outcomes. ▪ States that expanded Medicare coverage under the Affordable Care Act experienced a 50% decrease in infant mortality.8 ▪ Lack of family insurance puts children at higher risk for mortality and morbidity. 11.7% of Blacks are uninsured compared to 7.6% of Whites.12 ▪ Differential birth outcomes among Black women are a consequence of complex and overlapping social, behavioral, environmental, and genetic risk factors and systemic racism and sexism. ▪ The United Nations called on the United States to “eliminate racial disparities in the field of sexual and reproductive health and standardize the data-collection system on maternal and infant deaths in all states to effectively identify and address the causes of disparities in maternal- and infant-mortality rates.”33 ▪ H.R. 1318 and 5761 and S. 1112, long with the other bills/plans listed above, will address maternal and infant mortality by establishing committees to review pregnancy-related and pregnancy-associated deaths and improve maternal and child health. H.R. 5977, MOMMA’s Act (not enacted in the 115th congress), would promote hospitals’ adoption of safety best practices for childbirth, postpartum coverage of women under Medicaid and CHIP, and implicit bias training for health care providers. S. 3363/H.R. 6698, Maternal Care Access and Reducing Emergencies Act (introduced
in the 115th congress), supporting implicit bias trainings for healthcare professionals and promoting maternity care medical homes.25 H.R. 5761, Ending Maternal Mortality Act (introduced in the 115th congress), requiring the Department of Health and Human Services to outline a plan to reduce maternal mortality by 50% in 10 years.23
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S. 3392, Modernizing Obstetric Medicine Standards (MOMS) Act (introduced in the 115th congress), to promote data collection and adoption of best practices for childbirth safety.26 S. 3494, the Maximizing Outcomes for Moms through Medicaid Improvement and Enhancement of Services (MOMMIES) Act, expands health coverage for women post-birth and establishes a series of Medicaid and the Children’s Health Insurance Program (CHIP) requirements and programs related to maternal health.27 H.R. 6085/S. 3029, the PREEMIE Act (introduced in the 115th congress, became Public Law No: 115-328), supports federal services and research for preemies (preterm birth babies) and their families (the original PREEMIE Act was passed in 2006 (P.L. 109-450).28 Senator Elizabeth Warren has also unveiled a plan to link medical providers’ and facilities’ funding to care quality delivered to black women in order to improve maternal health outcomes in this subgroup.29 These acts have presently not been brought to a vote before the United States Senate or the House, and are currently in committee. H.R. 1318 is in the Committee for Health on Health under the Committee for Energy and Commerce, S. 1112 is in the committee for Health, Education, Labor and Pensions, H.R. 5761 is in the subcommittee for Energy and Commerce. Over 20,000,000 Black and African American women reside in the United States. African Americans make up approximately 9% of the Connecticut population. VLBW, PTB and IM disproportionately affect black women and infants, and must be addressed through policy reform and evidence-based research, and these initiatives are dependent upon your support.
White House - Clark Kennedy Signature of 44th United States president, Barack Obama, on the Affordable Care Act.
Cautionary Notes Maternal mortality and infant mortality is an issue that affects everyone, and it not only an issue that resides within the Black population. Furthermore, although risk of maternal and infant death is higher among Black women and children than in other races, being Black is not a risk factor in and of itself. Care should be taken to address the complex and interlocking social, behavioral, environmental, and genetic risk factors and systemic racism and sexism that cause differential birth outcomes and affect maternal health among the Black population from a rights-based, intersectional and patient-centered approach that recognizes institutional shortcomings as the major driver of differential health outcomes, not race. As Eichelberger et. al note in “Black Lives Matter: Claiming a Space for Evidence-Based Outrage in Obstetrics and Gynecology” published in AJPH Perspectives, “Enough is enough. Race is a social construct and the overwhelming statistics we present are attributable to a broken racist system, not a broken group of women. Evidence-based outrage is the objective, logical conclusion.”34 Next Steps and Conclusions First, it is imperative that Connecticut voters support legislation that protects diversity and addresses systemic medical racism. Steps need to be taken to increase the availability of demographically-similar OB-GYNs and other professionals within the communities of women they serve, encourage medical professionals to practice culturally sensitive and patient-centered care, include diversity and cultural competence training in medical training curricula to address and undo medical racism, and increase the availability of doula and midwives and low cost pre-, inter-conception and postnatal care, especially among patients who have had previous adverse pregnancy outcomes. It is also important to look to guidelines such as the Council on Patient Safety in Women’s Health Care’s patient safety bundle to address peripartum ethnic and racial disparities for assistance in implementing equitable care and developing best practices. Furthermore, supporting and extending ACA and Medicaid coverage, investing in community-led urban renewal projects specifically concerning access to high quality healthcare, and improving access to social services and evidence-based maternal education results in a decreased rate of infant mortality and improves maternal wellbeing.35 These objectives can be achieved by passing legislation to support local advocacy organization such as midwifery and doula
Flickr - Nancy Pelosi Felicia Willems, a member of the MomsRising group, expresses her thanks to the Affordable Care Act at the 2nd anniversary of the signing of ACA.
programs, Commonsense Childbirth, Black Women Justice Mission, Black Women Health Imperative, Black Mamas Matter, National Birth Equity Collaborative, and SisterSong, and by funding research such as the Maternal Health Task Force at the Harvard T. Chan School of Public Health, The Black Women’s Health survey, and the Perinatal Epidemiological Research Initiative (PERI) are important ways to address Black maternal and child mortality. Furthermore, the Building U.S. Capacity to Review and Prevent Maternal Deaths initiative co-led by the CDC, Merck for Mothers, and the Association of Maternal and Child Health Programs is a new, evidence-based research program to decrease maternal mortality. Supporting H.R. 1897 (116th), the MOMMA’s Act, and S. 116 (116th), the MOM’s Act and reintroducing similar legislation to H.R. 5761 (115th), the Ending Maternal Mortality Act to establish the National Strategy to Combat Maternal Mortality, S. 3363/H.R. 6698 (115th), the Maternal CARE Act, and S. 3494 (115th), the Maximizing Outcomes for Moms through Medicaid Improvement and Enhancement of Services (MOMMIES) Act—bills that will address maternal and infant mortality—are the best ways that policymakers and voters can ensure that continued government funding and influence is directed toward addressing differential birth outcomes and maternal mortality among Black mothers and children. www Ryan Sutherland is a Master of Public Health candidate at the Yale School of Public Health. His research focuses on the intersection of international development and public health, centering on homelessness, mental health, refugee rights, substance use, and maternal and child health. He can be contacted at firstname.lastname@example.org.
Expanding Emergency Contraceptive Access An Exploration of the Pros, Cons and Current Conversation on a U.S. and Global Scale By Ryan Sutherland*, Francesca Maviglia*, Alejandra Moncayo*, and Julia Spinnenweber* * all authors contributed equally to this work
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mergency contraception (EC) is a key tool for women to avert unintended pregnancy in a safe and effective manner shortly after having unprotected sex. EC is designed to be used in cases of non-use or inconsistent use of other contraception, and there are two categories of U.S. Food and Drug Administration (FDA) approved options as of 2018: i) orally administered pills, which includes progestin-based pills and ulipristal acetate, or ii) a copper intrauterine device (IUD) marketed under the name ParaGard. This paper will focus on the access and availability of oral EC, as the requirement of a prescription for these pills has varied over time in the U.S., across adolescent versus adult recipients, and globally. Brand and generic progestinbased EC versions are currently available over the counter (OTC) without a prescription to women of all ages, but access varies substantially across countries. Fewer than 19 countries including the U.S. allow OTC EC access, while 75 countries have EC available behind the counter (BTC) of the pharmacy only, and over 54 countries dispense EC solely by prescription.1 This paper analyzes each side of the debate surrounding the expansion of EC availability to OTC across countries, and concerning the discontinuation of age restrictions on OTC access, supported by i) relevant background and history, ii) an analysis of the current state of affairs. iii) the “pros” arguing for OTC EC access, iiv) the “cons” against expanded OTC access. History of EC Options, Approval & Access: Domestic The availability of EC options has expanded throughout the past 50 years, though the only modern option available sans prescription in the U.S. is progestinbased pills. Clinical administration of emergency contraception began in the mid-1960s and evolved into modern options at the close of the century. In the ‘60’s, high doses of estrogen were used to prevent unintended pregnancy exclusively as part of the treatment of rape victims, which proved efficacious but came with harsh side effects. In the 1970’s, a combination hormone formula called the Yuzpe regimen replaced the high-dose estrogen method. Combination pills are no longer recommended due to lower efficacy and more severe side effects than other modern methods. In the late 1970’s, the copper IUD, branded as ParaGard, gained FDA approval for EC use and remains the only non-pill, non-hormonal option currently recommended. ParaGard
Flickr One study found that an average woman with an IUD would have a pregnancy risk of <1%.
IUD is implantable in a clinical setting only and is thus not available OTC. 2
the original version and the first generic version, Next Choice, came to market.3
Following a request for new drug applications for EC pills, the FDA approved Plan B as the first oral EC product for use in the U.S. in 1999. Plan B is the branded version of the generic levonorgestrel, a progestin-based pill, and was available via prescription only until it became accessible OTC for men and women aged 18 or older in 2006. The switch from Plan B’s prescription to nonprescription status was a highly contentious and multi-year process involving Barr Laboratories, Plan B’s original manufacturer, and the FDA. Barr Laboratories initially requested an OTC switch without age restrictions in 2003, the FDA responded with concerns about the OTC impact on teen health and sexual behavior, despite studies indicating the availability of Plan B did not alter female use of other contraception methods or affect their sexual choices. Barr revised their request to seek OTC status only for women aged 16 and older, and FDA delayed their decision-making amid heavy criticism of the agency until 2006. The agency approved sales of Plan B OTC to men and women age 18 and older only, still requiring a prescription for users under 18. OTC access was expanded to men and women 17 and older as of 2009, the same year the single dose version of the pill, Plan B One-Step, replaced
In 2010, the FDA approved ulipristal acetate, marketed under the brand name “ella”, which remains the only other oral EC option. Ella has been sold exclusively via prescription in the U.S. since its approval and is considered the most effective pill option. Ella has straightline efficacy over a 120-hour period following unprotected sex, while progestin-based pills are most useful within 72 hours and have diminishing efficacy over time.4 In 2013, the FDA approved the OTC sale of Plan B One-Step with no age restrictions, after a years-long process that involved Teva Pharmaceuticals, the new manufacturer of the pill, and the U.S. courts system urging the FDA to approve the application. In 2014, the generic single pill alternatives Next Choice One Dose and My Way were also granted OTC status without age restrictions, with additional labeling requirements. As of 2018, additional generic versions are also available OTC in the U.S.3 Current state of the conversation: EC access around the world On a global level, EC access policies have varied significantly over time and across countries. Policies regarding the availabil-
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ity of the aforementioned oral EC options, levonorgestrel (LNG) pills and ulipristal acetate (UPA) pills, range from full OTC access for both to unavailability of either. Global policy supports wide accessibility to oral EC, with the pills included on the World Health Organization (WHO)’s Essential Medicines list.5 For countries in the European Union (EU), access has changed significantly to both oral options in the past decade. Before late 2014, women in 22 countries could purchase LNG pills in pharmacies without a prescription, with expanded access to convenience stores in the Netherlands and Sweden. In four countries – Croatia, Germany, Italy and Hungary – women could only access LNG pills via prescription, and in Malta, EC was unavailable. From 2009 to 2014, UPA pills were available in all but two countries via prescription only. The European Medicines Agency (EMA) recommended a reclassification to non-prescription status for UPA pills as of 2014, implemented by the European Commission. Twenty-three countries implemented full non-prescription access for UPA pills following the decision, with three countries including age restrictions and five countries exhibiting prescriptiononly or no access policies.6 In the rest of the world, EC access is more variable. Different levels of access include: no EC product officially registered for sale; EC available by doctor prescription only; at
least one EC product available from a pharmacist without a prescription by a physician (“behind the counter”, BTC, access); at least one EC product available over the counter (OTC), with age restrictions; and at least one EC product available over the counter without age restrictions. As of 2016, at least one brand of EC pills is registered in 148 countries, but 47 have no registered EC products.6, 7 A study of accessibility in low resource countries found that, in the public sector, only 23 of 42 countries offered EC; the public sector is a significant point of access for women who are poor, disadvantaged or rape victims.5
a market to support sales or too unstable a political structure to import EC. It is important to note that access may vary significantly depending on whether no EC product is registered because of bans and direct opposition, or due to a small population that does not represent an attractive market for distributors. Many small states such as Fiji, Monaco, Sao Tome, Maldives, or Tonga, as well some larger states facing political instability and conflict such as Syria, the West Bank and Gaza, and Afghanistan, rely on imports of EC products from other countries, so a limited supply is available. With respect
54 countries worldwide offer emergency contraception access by prescription of a physician only. These include countries in South America; Central and Southern Africa; Eastern Europe; the MENA region; Central, East, and Southeast Asia.
No registered EC According to the International Consortium for Emergency Contraception, no EC product is registered in 47 countries worldwide. Most of the countries with no registered EC are concentrated in Central America, East and West Africa, the MENA region, and South-East Asia.8 Lack of registration includes countries that may only offer EC importation through special license, have inconsistent supply, too small
to the countries that do not appear to import EC products, in some countries such as Costa Rica, Honduras, Jordan, and the Philippines, EC products have faced active opposition; others such as Libya, East Timor, and Sudan are currently being affected by conflicts; and others such as Brunei, Cape Verde, and Samoa have a very small population. Finally, a number of Gulf countries (Bahrain, Oman, Qatar, and the United Arab Emirates) do not currently import EC products, but it is unclear whether there has been active opposition to them.9 EC only by prescription 54 countries worldwide offer EC access by prescription of a physician only. These include countries in South America; Central and Southern Africa; Eastern Europe; the MENA region; Central, East, and Southeast Asia. Depending on the country and specific context, users might be able to obtain a prescription from family doctors, hospital staff, and healthcare professionals at a family planning clinic.10 Behind the counter (BTC) access
Flickr Clinical administration of emergency contraception began in the mid-1960s and evolved into modern options at the close of the century.
75 countries worldwide offer at least one brand of EC with behind the counter (BTC) access, including parts of South and Central America; East and West Africa; Central, East and South-East Asia; Oceania; and Europe. BTC access is defined as the ability to purchase EC from a pharmacist without a physician’s prescription; some countries might have one type of EC
picture of EC use and knowledge and examine the impact on access of different policies. Advocating for the Over-the-Counter Access to EC: Pros According to U.S. Medical Eligibility Criteria for Contraceptive Use (US MEC), the benefits of EC pills made available OTC far outweigh the risks.15 The OTC use of the EC pill is endorsed by The American Academy of Family Physicians, the American College of Obstetricians and Gynecologists, the American Medical Association, the American Public Health Association, and the International Planned Parenthood Federation. Furthermore, OTC access is supported without age-restriction for use among adolescents by the American Academy of Pediatrics and the Society for Adolescent Medicine.16 Self-administration of OTC EC is safe and effective
Timeliness is key when using emergency contraception.
available BTC but require a prescription for other brands or types. In general, LNG EC pills are more easily available without a prescription, while UPA EC pills are often by prescription only; very few countries require a prescription for LNG EC while allowing BTC access to UPA EC. LNG EC is generally more widespread, with several countries only having LNG products registered.11 Over the counter (OTC) access 19 countries worldwide offer at least one brand of EC with over the counter (OTC) access, most of which are concentrated in North America; Southern Africa; Europe; and South Asia. OTC access is defined as the ability to purchase EC without any gatekeeping from a healthcare professional. At present, no country allows for OTC sale of UPA EC.11 In Bulgaria, EC is only available OTC to individual over 16 years old, while in the Czech Republic OTC sale requires a minimum age of 17.12, 13 The following countries allow OTC sale with no age restrictions: Bangladesh, some provinces of Canada (while others only allow BTC access); Denmark; Estonia; France; India; Laos; Netherlands; Norway; Portugal; Romania; Slovakia; Sweden; the United States. No data on age restrictions is available for Malawi, South Africa, and Uzbekistan.11
Usage and knowledge Usage and knowledge of EC are also extremely variable by country. According to the International Consortium for Emergency Contraception, out of the 62 countries for which information is available, the highest percentage of ever use among women of reproductive age is found in the United Kingdom (61%), followed by Sweden (59%), Bulgaria (38%), France (22%), Estonia and the Netherlands (21% each), Denmark (20%), Austria (18%), Spain (14.7%) Germany (13%), the Congo (12%), Peru (11.7%), and the United States (11%). In all other countries, percentage of ever use falls below 10%, and in many cases it is lower than 1%. EC knowledge among women of reproductive age ranges from 98.7% in Spain to 3.2% in East Timor.14
OTC EC can reduce rates of unintended pregnancies or abortions resulting from inconsistent birth control use, contraceptive failure, or in cases of sexual assault involving unprotected sex. The use of levonorgestrel pills is safe and effective when self-administered for preventing unintended pregnancy.16 Its use can serve as an additional barrier to prevent unwanted pregnancy — studies have shown that use of EC pills within 72 hours of sexual intercourse reduced the likelihood of insemination by 75-88%.17 According to Seetharaman et al, “among 15- to 19-yearolds globally, complications secondary to pregnancy, childbirth, and unsafe abortions are the second-leading cause of mortality.”18 Considering the fact that 16 million worldwide births (18% of all births) occur among young mothers under the age of 20 years old — 95% of these births occur in low- and middle-income countries (LMIC) and many are unwanted — increased knowledge and accessibility of emergency contraception could potentially reduce the risk of birth complications and unsafe abortions globally among these youth.19 Furthermore, 45% of pregnancies for adult women in the United
Studies have shown that use of EC pills within 72 hours of sexual intercourse reduced the likelihood of insemination by 75-88%.
It is important to note that data on usage and knowledge is not available for more than two thirds of countries worldwide, and in particular it is missing for several countries with more restrictive legislations, making is challenging to paint a complete
States are unintended and emergency contraception can play a role in averting unintended pregnancy and reducing rates of abortion.2 Over 50% of unintended pregnancies end in abortion in the United States, and more widespread access to EC could reduce
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this amount by 700,000 procedures annually and decrease costs associated with Medicaid resource utilization.20 Therefore, widespread international efforts to reduce barriers to access EC by making them accessible OTC and advertising them widely can facilitate a reduction in unplanned pregnancies and could have a pronounced economic effect on government health care spending. Timely and accessible distribution of OTC EC No evidence exists showing that OTC sale of this medication would harm users, as EC has minimal side effects.21 Physicians and medical associations in the United States have long called for the OTC sale of EC, citing its benefits to women’s reproductive health and have since continued to advocate for its distribution OTC without a prescription, imploring the FDA to repeal previous legislation that imposed point-of-sale and age-limitations. Additional barriers to seeking EC — such as setting up an appointment to see a physician— might delay use of this drug which could hinder its effectiveness.22 A Lancet study found that EC taken within 12 hours resulted in a pregnancy rate of approximately 0.5%, tripling after 24 hours.23, 24 A nationwide survey indicated that 65% of women preferred to purchase EC directly from pharmacists, citing appointment timeliness and costs as a concern.24 Since pharmacies often are open on weekends and stay open longer than private clinics, OTC EC available at pharmacies increase opportunities for users to purchase this medication — and considering the short window of action of Levonorgestrel emergency contraception pills, timeliness of access is key.25 OTC access to EC decreases perceived and real barriers to access OTC EC is of particular significance to women who lack insurance, minorities, and women of lower socioeconomic statuses.2 Furthermore, barriers to access could disproportionately affect youth in their ability to access EC: stigma (perceived or real) that accompanies doctor visits to procure prescriptions for this medication could augment rates of unwanted pregnancies, increase negative birth outcomes, and result in an uptick of unsafe abortions among this underage sub-
group.26 Therefore, offering EC OTC and without age limitations or point-of-sale restrictions is important for its timely distribution and use among all women, particularly among these disadvantaged groups, due to these concerns regarding costs, timeliness, and stigma.” Risks of EC are minimal OTC EC is non-addictive, non-toxic, nonteratogenic, and isn’t dose specific. Further supporting continuation of the sale of OTC EC, the prescription for levonorgestrel pills is not prescribed according to medical need but is prescribed to patients who do not wish to become pregnant after unprotected sex or contraceptive malfunction (i.e. electively, not medically). Moreover, EC dosage does not need to be adjusted before being prescribed and therefore doesn’t require the need for dose calibration via consultation with a medical professional.16 The risks of taking EC are much lower than taking a once-daily birth control pill, and even among those contraindicated for
Overall, this medication is effective for all women of childbearing age, doesn’t interact with other drugs, and doesn’t result in an overdose if too many pills are taken.16 Furthermore, as stated previously, it doesn’t cause birth defects in children born to mothers who were using this medication during pregnancy. The aforementioned criteria permit its sale OTC, according to the U.S. Medical Eligibility Criteria for Contraceptive Use (US MEC). Therefore, its minimal side effects, effectiveness after repeated use, and lack of interactions with other drugs make it an attractive method of preventing pregnancy. Misuse is rare Instructions for OTC EC are easy to follow among women of various ages and educational backgrounds. Subsequently, women are generally capable of deciding themselves if this pill is right for them and following treatment regimens without provider instruction.32 Clinical appointments were shown to be no
Although myriad myths attempts to equilibrate EC with abortion-inducing drugs, these pills are not the same as mifepristone or misoprostol that induce abortions: ECPs delay ovulation, preventing the timely union of the sperm and an egg and implantation into the uterine wall.
this drug, EC poses almost no risk — contraindications may make the pill pharmacologically less effective but do not induce significant side effects.27, 28 Side effects are minor and include nausea and vomiting. Menstrual cycle disruption can occur rarely after prolonged successive use of EC.28 Furthermore, taking the EC pill successively within a short time period does not diminish its effectiveness.29 Although this medication is contraindicated for women who are pregnant — it is not effective at terminating a pregnancy — levonorgestrel will not cause harm to a developing fetus (nonteratogenic).30 Lastly, although myriad myths attempts to equilibrate EC with abortioninducing drugs, these pills are not the same as mifepristone or misoprostol that induce abortions: ECPs delay ovulation, preventing the timely union of the sperm and an egg and implantation into the uterine wall.31
If the average woman used progestin-only EC each time she had sex in one year, her pregnancy risk would be 20% compared with 8% risk if she used regular oral contraception or <1% if she used an IUD or implant.
more effective at guaranteeing that women with contraindications were appropriately screened and prevented from accessing this medication than consultations with pharmacists, and consultations were shown not to affect comprehensibility of treatment or use.33 A comprehensibility study including adolescent women and women with low literacy levels showed that the majority of women regardless of literacy level or age understood how to appropriately use OTC EC.34 And as pill regimens for EC are simple — Plan B One Step requires women to take only one pill — instructions for taking this medication are easy to follow for users.35 According to Dr. James Trussel, Princeton University researcher in reproductive health, emergency contraception pills “are extraordinarily safe drugs. No deaths have been linked to using emergency contraceptive pills. And the benefits of being
able to prevent pregnancy after sex outweigh any possible risks of taking the pills.”36 Therefore, providing EC in OTC settings without requiring a prescription from medical professionals is safe, easy, and effective for the prevention of unwanted pregnancies.28 OTC EC use doesn’t increase sexual risk behaviors among users Lastly, no scientific evidence exists that providing EC to women would increase sexual risk behaviors or that making this medication OTC would disrupt prior birth control or contraception use patterns.37 In several studies, women who received advanced provision EC (i.e. in advance of sexual encounter necessitating its use) were not more likely to engage in higher rates of unprotected sex or have sex with a greater number of sexual partners, did not change their pattern of use for birth control or adopt less effective contraception methods, and did not experience higher infection rates of sexually transmitted infections.38 Furthermore, making this product available OTC did not increase individual utilization — Raymond et al showed that only 1.5% of study participants utilized OTC EC more than once over the study’s three month investigative time frame.39 Arguments against Expanded EC Access: Cons While clinicians, public health advocates and other professionals are strongly in favor of expanded OTC access to EC across
age groups, critiques remain concerning the medication’s impact on adolescent behavior, risks of inappropriate use and unintended consequences among adolescents, and long-term health effects.
harmful behavioral consequences of EC use among older adolescents may not be rightfully extrapolated to younger adolescents.42
Easy EC access may be a negative influence on teen sexual behavior
Although research has found that increased EC access does not reduce ongoing contraceptive use, EC is scientifically less effective in preventing pregnancy compared to regular contraceptive options. One study found that if an average woman used progestin-only EC each time she had sex in one year, her pregnancy risk would be 20% compared with 8% risk if she used regular oral contraception or <1% if she used an IUD or implant.43 Young, inexperienced or uneducated users may not understand that EC is less effective than regular birth control, which critics can argue could negatively impact their contraceptive and sexual choices.
Adolescents may lack the maturity and cognition to make safe sexual decisions, and OTC access to EC could encourage risky choices accordingly. The FDA’s Center for Drug Evaluation and Research (CDER) Acting Director denied Plan B’s switch from prescription to OTC in 2004 with the critique that young adolescents may exhibit “impulsive behavior, without the cognitive ability to understand the etiology of their behavior”.40 With the knowledge that a post-coital solution to unprotected sex exists and is readily available at every pharmacy OTC, teens may engage in unsafe sexual behaviors like sex without a condom or with multiple partners due to easy EC access and their lack of cognitive maturity.40 If expanded EC use is associated with teens having more sexual partners, this could increase STI incidence. Research has found STI prevalence is higher for individuals reporting more sexual partners; in 2009, females aged 14-19 with more than three sexual partners exhibited an STI prevalence of 53.3% compared to 19.2% for those with one sexual partner.41 Furthermore, as argued by the 2004 CDER Acting Director, data demonstrating lack of
EC is not as effective as regular contraception
EC does not reduce population-level rates of unintended pregnancy EC has also been criticized for failing as a public health tool, as data has shown access to EC does not positively impact unintended pregnancy rates in populations in which it is available. While the reason for the lack of association between EC access and unintended pregnancy rates is unknown, one explanation may be that women do not use EC in cases of highest risk unprotected sexual events often enough to cause a measurable effect on the population level.43 This research suggests that public health professionals should encourage the use of regular contraception and sexual education that better prevents unwanted pregnancy to better impact these rates. OTC access removes potential for educational gatekeeping
Flickr The My Way label says to take one white pill within 72 hours after unprotected sex.
OTC EC expansion to adolescents eliminates the important barrier of requiring that adolescents interact with a trained healthcare provider prior to receiving the contraceptive option, which is implicit in BTC and prescription-based access to EC. A physician, nurse or pharmacist would be able to educate and ensure complete understanding of the product. Critics can argue that requiring clinicianadolescent interaction is necessary because EC has substantial short-term side effects, and because teens in the U.S. school system receive inadequate and varied sexual education. EC has noticeable side effects, including nausea or vomiting, headache, bleeding between menstrual cycles and cramping. The pill also has risks that younger or inexperienced users may not educate themselves on by reading the product’s labeling alone,
YALE GLOBAL HEALTH REVIEW
Map created with data available from the International Consortium for Emergency Contraception and updated with data from the European Consortium for Emergency Contraception.
including potential allergies or drug interactions that reduce EC’s effectiveness.28 While providing contraindication questions at point-of-sale in pharmacies has been found to be as effective as conversations with providers, this practice may not be implemented in a standardized manner across pharmacies and risks could remain.44 Lastly, school age adolescents receive highly variable sexual health education in the U.S. Only 24 states mandate sex education, and programs include disparate content and implementation ranging from abstinence-only to full evidence-based information.44 Given this variability, it is reasonable to assert that adolescents may not understand contraceptive options well enough to access EC without clinician discussions. Religious objections that EC approximates abortion Some religious groups frame EC in the context of the abortion debate, arguing that the drug may have an abortifacient effect. Religiously affiliated opponents claim that the product may work to prevent a fertilized egg from implantation up to roughly a week following conception, which they equate with abortion. The labeling on progestin-based EC products cites implantation prevention as a mechanism used by the pharmaceutical product, suggesting that these critiques are well-founded for groups which identify as anti-abortion.45
Lack of causal efficacy data and post-market data concerning adolescents Although the FDA has concluded that EC is safe and effective for adolescent and adult populations, there has never been a placebocontrolled trial of EC efficacy.43 The full mechanisms of action for how EC works are also unknown by clinicians.45 This lack of data could be used as a criticism of expanded EC access since there are still unknown elements about the product. The enduring impact of EC on adolescent user health may also not be fully known due to a lack of long-term post-market clinical data. The FDA approved expanded OTC EC use for females aged 17 or older in 2009, meaning there is less than a decade of post-market surveillance data available on how this additional access may have affected adolescents clinically or behaviorally. Publicly available research is strongly skewed towards the positive attributes of expanded EC access, and studies which take a critical lens towards EC use may be underfunded and unable to reach the popular media due to public consensus being favorable for the product. More unbiased research questions and data could be necessary to fully understand its long-term consequences on younger users. Conclusion Overall, the positive results of making emergency contraception available over-the-
counter are myriad and outweigh criticisms.2 Not only can timely over-the-counter access to emergency contraception reduce unintended pregnancies in instances of contraceptive failure or inconsistent birth control use, unprotected sex, or sexual assault, but its ease of use and relative safety can reduce rates of unsafe abortions and negative birth outcomes for all women of reproductive age, it can have a pronounced economic influence on the government and consumer health care spending, and it can reduce stigma and other barriers to access particularly among the uninsured, minorities, and youth.2 According to Cecile Richard, President of the Planned Parenthood Federation of America stated, the FDA’s decision to make emergency contraception available over-the-counter was “a strong statement to American women that their health comes before politics. And that’s the way it should be…. This will help reduce the number of unintended pregnancies and protect the health and safety of all women.”46 www Ryan Sutherland and Francesca Maviglia are first-year graduate students, and Alejandra Moncayo is a second-year graduate student at the Yale School of Public Health (YSPH). Julia Spinnenwebte is also a second-year graduate student at YSPH and the Yale School of Management. All authors contributed equally to the article. Ryan can be contacted at email@example.com.
Humanitarian Challenges in
the Congoâ&#x20AC;&#x2122;s Ebola Epidemic
By Ben Grobman
Flickr Ebola treatment center in Beni, located in the North Kivu province of the Congo.
YALE GLOBAL HEALTH REVIEW
n December 2013, an unidentified disease began to spread in the small Guinean village of Meliandou. On March 22nd, more than 3 months after the initial transmission of the disease, the World Health Organization, confirmed the identity of the disease as Ebola virus disease.1 By the time Guinea was declared Ebola-free in June 2016, 28,600 people had been infected and 11,325 had died, more than all other Ebola outbreaks in history combined.2, 3 The severity of the 2014-2016 outbreak put the global health community on high alert, leading to a far better understanding of how to prevent such devastation in the future.4 And yet, less than 3 years after the end of the last epidemic, the Democratic Republic of the Congo is quietly experiencing the second worst outbreak of Ebola in history—in the middle of a war-zone.⁵ On August 1, 2018, the Congolese Ministry of Health declared an official outbreak of Ebola virus disease in North Kivu, a province in the Northeastern Democratic Republic of the Congo.6, 7 The outbreak has been propelled, and thus made particularly difficult to contain, as a result of ongoing armed conflict in the Northeast Congo that has displaced over a million people.7 The North Kivu region, which borders Uganda, has long been a site of conflict between DRC government forces and militant rebel groups, most notably the Allied Democratic Forces, a group from Uganda.8 According to an August 2018 estimate, over 100 armed groups are currently active in North Kivu, leaving the population “virtually in a stage of siege since October 2017.”7 During this conflict, observers have reported numerous vicious human rights violations, including machete attacks, recruitment of childsoldiers, rampant sexual violence, razed villages, and frequent stories of “massacres, extortion, forced displacement, and other humans rights violations.”7
And yet, less than 3 years after the end of the last epidemic, the Democratic Republic of the Congo is quietly experiencing the second worst outbreak of Ebola in history.
To further exacerbate an already dire situation, the Congolese government routinely commits human rights violations. For one,
Flickr Dr. Tedros Adhanom Ghebreyesus in Beni evaluating the Ebola response.
they have condoned and even supported the rape and murder of civilians.9 Additionally, the government has been accused of using the Ebola outbreak as a way to further an already flawed democratic process. They also banned people in affected areas from voting in already delayed national elections, citing supposed fear of worsening the epidemic as a justification for the ban.⁵ Some local politicians from opposition parties have tried to leverage the epidemic to support their political agendas, “spreading rumors that Ebola was concocted by the government to exterminate them.”⁹ The overall effect of this conflict has been to produce an atmosphere of chaos, violence, and distrust, which has only compounded the severity of the Ebola outbreak and created new difficulties in containing the outbreak. Health officials are forced to contend with not only a catastrophic disease, but also a terrorized and traumatized population that now has a deep fear of both authority and outsider intervention.9 This has created a particularly difficult situation for health workers, as they are forced to deal with a dangerous political system in conjunction with one of the world’s most devastating infectious diseases. Ebola virus disease, previously known as Ebola hemorrhagic fever, is a lethal viral disease characterized by initial symptoms of
headache, fever, and muscle pains, followed by vomiting, diarrhea, and sometimes severe bleeding.3 During Ebola outbreaks, the disease is initially transmitted to humans from wild animals through the bodily fluids of infected animals, including apes, fruit bats, and monkeys. It is suspected that fruit bats are Ebola’s natural host, but this has not been confirmed.3 The majority of human transmission occurs due to contact with the bodily fluids of infected people.3 Ebola is a particularly devastating disease for a number of reasons, many of which contributed to the catastrophe of the 2014-2016 epidemic. First, Ebola has an extremely high mortality, averaging 50%. During some outbreaks, however, mortality rates have reached up to 90%. Second, as shown during the 2014 outbreak in Guinea, many of the symptoms of Ebola are similar to those of other much more common diseases such as malaria and typhoid fever, reliance on which could easily lead to misdiagnosis. As a result, Ebola requires laboratory diagnostic tests for identification, a process that saps valuable time from appropriate disease control response.3 When people are infected with Ebola, they often take over a week to begin presenting symptoms. While they are not infectious during this span of time, they can travel long distances
before the infectious symptomatic stage begins, a factor which increases the risk of spreading the disease over a wide area.10 Third, due to Ebola’s transmission through interpersonal contact, health workers are placed at particular risk of contracting (and dying from) the virus, weakening already fragile health systems.10
...an aggressive approach to treatment both denies people their humanity and creates a situation in which people lose faith in health workers.
Ebola was first documented in human populations in 1976, when two separate outbreaks of hemorrhagic fever struck the Democratic Republic of the Congo (then called Zaire) and South Sudan Sudan (formerly Sudan), leading to 431 deaths.2 In subsequent years, there were multiple smaller outbreaks of Ebola, largely concentrated in Central Africa.2 The 2014-2016 outbreak, on the other hand, infected people in West Africa, where there was little prior knowledge of the disease in addition to insufficient public health infrastructure that might have otherwise mitigated further disease transmission.1 Additionally, previous outbreaks had been largely concentrated in rural areas, while the 2014-2016 outbreak primarily impacted people in large urban centers, where high population density helped it to spread like wildfire.1 The world learned numerous lessons from the 2014-2016 Ebola outbreak, lessons which were meant to ensure that no such large outbreak could happen again. Aside from the devastating death toll in Africa, the infection also spread to wealthy countries, including the United States, Italy, and the United Kingdom, prompting fears of a global pandemic.2, 4 As panic spread through the populations of wealthier countries, the global health community took serious steps to prevent another catastrophe from happening.4 Since 2014, global health officials have been on much higher alert for Ebola outbreaks. Researchers quickly went to work on developing experimental Ebola vaccines, one of which has even been shown to reach up to 100% efficacy.4 In particular, health authorities working on the West African outbreak learned the importance of human connection in working with populations affected by Ebola.11 Due to political instability in the Congo, however, many of these lessons have not been properly applied. According to Dr. Nicholas Alipui, former
Director of Programs for UNICEF, “the burial rituals and the socioeconomic taboo processes in the local communities [require] heavy presence in terms of social mobilization communicant strategies/being able to reach out to women’s groups, local leaders, [and] religious leaders. That was critical in the case of the West African outbreak. I see a
lack of that level of engagement and mobilization happening in the Congo.”11
Due to the severity of the situation in the Congo, global health officials have taken an aggressive approach to treating and quarantining infected people. While this seems necessary on the surface in order to contain a deadly disease in a dangerous region, an aggressive approach to treatment both denies people their humanity and creates a situation in which people lose faith in health workers. As stated by Dr. Joanne Liu, International President of Doctors Without Borders, “Using police to force people into complying with health measures is not only unethical, it’s totally counterproductive. The communities are not the enemy. Ebola is the common enemy.”12 As a result of these tactics, attempts at treatment have often backfired. Many people who lack a clear understanding of Ebola are already terrified by the presence of health workers in full protective gear, sometimes accompanied by armed forces, a form of response which is particularly counterproductive in already wartorn areas.5 Additionally, police officers in the region have used force in order to make people comply with treatment, a strategy which has further alienated the afflicted populations.13 In order to stop the spread of Ebola, health workers must take extreme precautions with infected people, placing the living into isolation units and putting the still-contagious dead into plastic body bags, a process which interferes with traditional burial rituals.5, 14 Many locals question why health workers have only now arrived to treat Ebola, when the area has long been plagued by far more common but equally deadly diseases such as cholera and malaria. Given that they are constantly surrounded by disease, locals feel that health workers only care about preventing the spread of Ebola as opposed
to improving people’s overall health.5, 15 As stated by Dr. Alipui, “In situations where government services have always been lacking and the basic primary health care systems don’t deliver health to the local population, people don’t suddenly have a great deal of trust in the government health worker and government system.”11 This lack of trust in authority has caused people to ignore official health information. For example, in a survey published in The Lancet, over a quarter of people in affected areas did not believe that there was an Ebola outbreak, and less than two-thirds were willing to accept the new Ebola vaccine.16 The pervasive atmosphere of mistrust has led to multiple attacks on treatment facilities, severely impeding the efforts of health workers even to this day. In the February 2019 alone, there were over 30 separate attacks on relief efforts.5 On March 9, just hours before Dr. Tedros Adhanom Ghebreyesus, the Director-General of the World Health Organization, was supposed to visit an Ebola treatment center in the most severely hit area, the center was attacked by heavily armed assailants, leaving one police officer dead, many health workers injured, and numerous frightened patients trapped in isolation units.14, 17, 18 The attack came less than a week after the center reopened after having previously closed in response to an arson attack.14 In addition to these organized attacks, of which the source is unclear, individuals have staged their own resistance to what they see as an invasive presence. In a particular striking story, police officers trying to remove an infected infant from his home were threatened by the boy’s grandmother, who wielded a machete and threatened to kill them.9
Many locals question why health workers have only now arrived to treat Ebola, when the area has long been plagued by far more common but equally deadly diseases such as cholera and malaria.
The combination of aggressive treatment methods, isolated people, and social instability has created an epidemic with a devastating impact. As of October 20, 2019, there
YALE GLOBAL HEALTH REVIEW
Flickr UN peacekeepers hand supplies to Congolese police maintaining security in sites occupied by health workers.
have been 3,243 reported cases and 2,171 total deaths.19 Of particular consternation for health officials is that 40% of the deaths are occurring in communities as opposed to health centers, indicating that sick people are not using health centers. This lack of healthcare utilization makes it much more difficult to track the spread of the disease, as many more people could be exposed without the knowledge of health service providers.5 Many of those who do seek out treatment decide to go to traditional healers, who do not keep a record of their patients, adding further difficulty to tracking efforts.9 Ironically, it is this type of medical and political situation, under the most inhumane and austere circumstances, that requires the most humanistic, rightsbased approach to care. As stated by Dr. Liu, “Ebola is a brutal disease, bringing fear, and isolation to patients, families and health care providers. The Ebola response needs to become patient and community centred. Patients must be treated as patients, and not as some kind of biothreat.”20 These effects are only exacerbated by the political and social situation of the Congo, where a preexisting atmosphere of fear and paranoia
only compounds the psychological havoc wreaked by Ebola. According to Dr. Alipui, one of the most important things he learned from the West African outbreak was that “this is not a medical emergency. This is a socioeconomic and communication challenge. It’s beyond the vaccine and beyond the emergency services, it’s what the dynamics [are] in people’s homes, people’s lives, people’s relationships.”11 A similar sentiment was reflected by Doctors Without Borders physician Dr. Vinh-Kim Nguyen in an opinion piece for the New England Journal of Medicine. He stated that “the most important part of my job is building trust with the communities we serve. Greater trust means more patients presenting early, and early presentation strongly affects the prognosis for many conditions. Building trust starts with relationships with patients and families, which can be nurtured even if patients are in isolation.”15 The failure of aggressive approaches in quelling the Ebola epidemic has led health officials in the Congo to begin implementing a rights-based approach to care. Some health officials have already taken steps to humanize the Ebola response. One striking
example is placing body bags inside of coffins before burying people in order to maintain the deceased’s dignity while also preventing further spread of the virus.9 After increasing community dialogue, a previously closed treatment center in the province of Katwa was reopened. Community-based response measures have caused communities previously unreceptive to outsider help to admit health workers. And, although new cases continue to appear, as of October 2019, the incidence rate is down to fifteen new cases a week.21 In order to stop the second-worst outbreak of one of the most devastating infectious diseases in the world, it is thus essential that health officials take a humane response despite the pervasive violence and danger, a response which focuses on treating people instead of the single disease. www Ben Grobman ‘21 is a History major from Chicago, Illinois. When he’s not writing for the Global Health Review, he plays piano in the Yale Jazz Ensemble and works on blood drives with the American Red Cross at Yale. You can reach him at firstname.lastname@example.org.
How Climate Change May Be Fueling Them By Vanessa Blas
Fred Murphy, Sylvia Whitfield/CDC
YALE GLOBAL HEALTH REVIEW
etween August and October 2019, the Center for Disease Control received word of over thirty cases of patients infected with the eastern encephalitis virus, including twelve deaths, confirming a series of unprecedented outbreaks occurring in the United States.1 Three of those deaths occurred in Connecticut. A press release by Connecticut Governor Ned Lamont urged residents to be cautious while outdoors and avoid getting bitten by mosquitoes, the transmitter of the virus.2 With five of the other fatalities occurring in Michigan, three in Massachusetts, and one in Rhode Island, EEE is widespread throughout the northern region of the United States, scaring the public, along with prompting a call for preventive action.1 The eastern equine encephalitis virus (EEEV) is maintained specifically in Culiseta melanura (black-tailed) mosquitoes that have fed on infected birds, both of which primarily reside in freshwater swamps.1 Despite being a rare virus, it is highly fatal in many animals, such as horses and goats.1 The virus, first discovered in 1831 when around 80 horses died from the illness, is also deadly in humans — around 30% of infected people die from EEE.1 Even those who live after infection are not fully healed, as survivors may struggle with neurologic problems such as paralysis due to inflammation of the brain.1 EEEV infection has an incubation period between 4-10 days, but the illness can last twice that period with symptoms ranging from chills, high fever, muscle and joint pain to vomiting, restlessness, convulsions, and even ending in a coma.3 Since no vaccine or treatment currently exists, those residing in mosquito hotspots or near freshwater swamps have an increased risk of infection.
Centers for Disease Control and Prevention A map with the number of reported human cases of EEE in the United States per state from 1964–2010.
enacting this policy, the probability of children getting bitten by mosquitoes is reduced, especially since the young and elderly are the most at risk of getting severe EEEV.6 Public health officials in multiple states advise wearing insect repellent, long sleeves and long pants, and avoiding the outdoors after dusk until the first frost of the year begins, defined by two consecutive hours of a temperature below 28 degrees Fahrenheit that kills the mosquitoes.1, 6, 7 However, with September 2019 being the warmest recorded September in history, some scientists and meteorologists predict the first frost will occur later in the fall, thereby prolonging the time EEE-infected mosquitoes live and exacerbating the
The virus, first discovered in 1831 when around 80 horses died from the illness, is also deadly in humans – around 30% of infected people die from EEE.
The Center for Disease Control (CDC) reports an average of seven human cases of EEE each year in the United States, usually in Florida, Georgia, Massachusetts, and New Jersey.3 Since there are now more than triple the amount of usual cases, states are calling it the worst outbreak in more than a decade.4,5 In response, schools have pushed sport games and practices to earlier times in order to avoid mosquito bites.5, 6 James Jajuga, the mayor of Methuen, Massachusetts, moved Halloween trick-or-treating times to 4:30 p.m. – 6 p.m., rather than 5 – 7 p.m. By
amount of cases in the Northeast.7 Other scientists are even hinting that climate change is fueling these outbreaks.
A group of Canadian scientists recently noted that, in the past two decades, the incidence of mosquito-borne viruses in Canada, including the West Nile and EEE, has increased by 10%.9 The cause for this observed trend? Climate change. In their observational study, Ludwig and colleagues claim that increased occurrence of extreme heat, heavy rainfall events, and decreased number of frost
days, have optimized the egg-laying and larval conditions for mosquitoes by providing more standing water.9 In result, the abundance of mosquitoes exponentially increases while also allowing them to live in these ideal environments for longer.9 In other words, climate change has made the environment more favorable for these mosquitoes to breed and ultimately spread viruses, like EEE, that can be lethal to humans. An earlier EEE outbreak in 1989 claimed that the outbreak occurred due to excessive rainfall in that year.13 Another journal article corroborated these findings, as Dr. Armstrong and Dr. Andreadis wrote in the New England Journal of Medicine that above-average rainfall and milder winters in the Northeast have been associated with a greater amount of EEEV activity and expansion northward.10 This expansion included five cases in New Hampshire in 2005 to even two EEE cases in Vermont in 2012, where the virus made its first appearance in the state.10 Such observations would explain why cases of EEE have crossed beyond the state borders of New Jersey, Florida, and Massachusetts to places like Connecticut, Rhode Island, and New Hampshire, where these states have less freshwater swampy environments but have experienced mild winters and excessive rainfall.1,11 Furthermore, the trend of warmer summer conditions has increased the amount of virus replication in the mosquitoes and the amount of blood meals they take, increasing the probability of the mosquitoes acquiring EEEV in the first place.10 The article,
published in 2013, warned the lack of attention towards endemic diseases that are transmitted by mosquitoes, ticks and fleas, known as vector-borne diseases, and urged comprehensive surveillance programs to monitor and possibly reduce the amount of EEE cases in New England.10 Six years later, the number of cases has increased as warmer summers, heavier precipitation, and milder winters continue to occur, if not worsen.11
the double burden that many low-middleincome countries face today: grappling with both non-communicable diseases, or diseases not transmissible by human contact, and numerous infectious diseases plaguing the population.16 Such claims emphasize the importance of enacting climate change policy in an attempt to reverse some of the damage to our environment.
These outbreaks are not temporary events that will decrease over time; a journal article claimed that by 2100 the average global temperatures will have risen by 1.5 – 3.5 ºC (2.7 – 5.4 degrees Fahrenheit).13, 14 This increase is sufficient enough to cause a significant northern shift in encephalitis cases, especially if the trend of warm, wet winters and hot, dry summers continue to occur in the upcoming years.13, 14 EEE cases are just a few of the many other mosquito-borne diseases that can continue to rise in precedence due to climate change. In fact, a recent study stated that by 2050, half of the world’s population could be at risk of mosquitoborne diseases like dengue fever or the Zika virus.15 If current changes in the climate were to persist, infectious diseases could begin to arise in high income countries and lead to
Shaping and enacting climate change policy may be easier said than done, especially
vector-breeding sites.17 Additionally, fragile healthcare systems may not be equipped to respond to longer periods of hot-temperatures, and thus longer periods of breeding.17 Although EEEV may not be prominent as malaria or the West Nile virus, further attention must be brought on how high-income countries are more prepared to tackle these infectious diseases. In order to decrease a higher incidence and mortality rate of vectorborne diseases in low-income countries, focus
EEE cases are just a few of the many other mosquito-borne diseases that can continue to rise in precedence due to climate change.
in low-income countries where the per capita mortality rate from vector-borne diseases is 300 times greater than high-income countries.17 Although most low-income countries happen to reside in tropical regions, which are favorable conditions for infected mosquitoes, the risk for such diseases are also heightened due to lack of access to preventive care, healthcare workers and services, and high-quality housing further from
must be placed on facing these socioeconomic issues while also bringing awareness to how climate change can impact the progress of current work being done to mitigate the health inequity gaps in these countries.
However, other scientists are not as quick to support the claim that climate change is the main cause of the EEE outbreak. Professor of medical geography Sadie Ryan at the University of Florida, who coauthored a study on how climate change has expanded the range of Zika cases, believes that it is hard to establish a clear link between climate change and EEE, as it is a rare disease known for its occasional flares and outbreaks.18 Insect ecologist Howard Ginsberg, who works for the U.S. Geological Survey, also supports Ryan’s statements, saying global warming could be a possible factor in the EEE outbreak, but there is insufficient evidence to draw a definitive conclusion.18 Although both scientists don’t refute the fact that climate change could play a role in EEE cases, they are less inclined to agree that it is the main cause due to the complicated ecological web of which these mosquitoes are a part.
Public Health Library Eastern equine encephalitis virus peak activity occurs in marshes, such as these in New Jersey.
Dr. Catherine Brown, the state epidemiologist for Massachusetts, believes that a slight change in this ecological web is the main reason for the EEE eruption. As previously stated, swamps are the ideal environment for the maintenance of EEEV activity, as mosquitoes feed on infected birds that inhabit these freshwater swamps.1 Brown explains that the infected birds migrate from Florida to New England every year and prefer the maple and cedar swamps of Massachusetts.19 Although these birds are infected, they don’t die from the exposure
YALE GLOBAL HEALTH REVIEW
Flickr Mosquito obtaining a blood meal from a human.
and instead begin to build an immunity towards the virus; this immunity prevents EEEV from spreading to other birds, resulting in the lack of EEE cases over the years.19 When these immune birds produce offspring, however, the new generation of birds are vulnerable and highly susceptible to the virus.19 If this situation is coupled with migrating birds who bring new strains of EEE to which no bird is immune, these events can trigger the outbreaks that occur every couple of decades.19 Additionally, other types of mosquitoes can possibly feed on these infected birds and spread the virus to humans, even if they are not the typical Culiseta melanura mosquitoes known for carrying it.7, 19 In fact, the flare-up in cases could occur for a few years, followed by another period of dormancy or decrease in EEE.19 Considering that the 2019 EEE outbreaks are one of the greatest in the past few decades, Dr. Brown’s reasoning seems to explain the unusual number of cases reported this fall. Aside from climate change and disturbances in the EEE cycle, human activity could also be at fault for the EEE outbreak. Increases in the human population can impact the land on which they reside, as
converting wetlands to suburban development could disrupt in the EEE cycle.10
In other words, climate change has made the environment more favorable for these mosquitoes to breed.
Specifically, human encroachment on the habitat where EEEV activity is most prevalent could cause a higher amount of EEE cases, as humans would live closer to the vectors known for transmitting the virus.10,18 The movement of humans towards these habitats could also cause mosquitoes and birds to expand into other environments, thereby increasing the range of EEE.10 No matter the perspective or approach to explain the outbreaks, most scientists still agree that climate change is one of the many complicating factors fueling the incidence of EEE in the Northeast and Midwest. More research could clarify the impact climate change has on EEE, since research
has been successfully done on climate change with other mosquito-borne illnesses, but the current number of studies is limited due to the minimal attention to and rarity of EEE.10 Research could also provide more insight on how to predict, and possibly prevent, these outbreaks.18 In the meantime, prevention will be key in reducing the number of EEE cases across the northern region of the country. Multiple public health departments in various states advise citizens to limit the time spent outdoors around dusk and dawn, wear light-colored, long pants and long sleeves, use insect repellent and mosquito netting, take caution when near freshwater swamps, and ensure that window screens are tight and do not have holes.7 These preventative techniques should be adhered to until the first frost of the year occurs, which many states affected by EEE hope comes sooner than later. www Vanessa Blas is a sophomore in Timothy Dwight College. She in an anthropology major and Global Health Scholar. She can be contacted at email@example.com.
The Power of Human Touch
By Nina Uzoigwe
YALE GLOBAL HEALTH REVIEW
aregiving across continental borders is a multifaceted experience within global healthcare. Arthur Kleinman, a professor of medical anthropology and cross-cultural psychiatry at Harvard University, stated in his publication in the Lancet that caregiving is “a deeply interpersonal, relational practice that resonates with the most troubling preoccupations of both carer and sufferer.”¹ In this relational practice, “the laying [of] hands, empathic witnessing, listening to the illness narrative, and providing moral solidarity through sustained engagement and responsibility” embody the moral face of caregiving that physicians are to provide the sufferer in order to intrinsically acknowledge their patient’s personhood.¹ Impartation of presence plays a significant role in how a person internalizes their illness and progresses through treatment. When comparing the healthcare systems of the United States and Europe, one can articulate how this human touch is promoted throughout their patient care in relation to the impact of their respective cultures. Across this continental border, this presence is extremely beneficial to those in need of easement and reassurance, but the implementation and the extent to which this is hindered is heavily impacted by societal standards defined within their relative cultures. Over the course of these past two summers, I had the opportunity to shadow and experience this difference firsthand in two clinical locations, the first being Ospedale Niguarda. Ospedale Niguarda is a leading Italian general hospital in Milan, Italy, a city often referenced as the Italian capital of health.² With over 4,400 employed medical personnel and servicing approximately 2 million outpatients, it hosts all medical disciplines and technologies from the stages of diagnosis to rehabilitation, integrating all disciplinaries to ensure that the best healthcare is delivered to all its patients.2 The second hospital visited was Unidade Local de Saúde de Matosinhos. Known as the first local hospital unit located in Matosinhos, Portugal, it was established by the Decree-Law n° 207/99, a law implemented to improve the performance of Portugal’s primary health care system through the unification of health services, and serves as a reference model for other healthcare providers.³ By providing primary and continuous healthcare to the population located within this municipality, it embodies and exemplifies the effective integration of local hospitals and related health centers into one single provider entity, creating the foundation for the construction of five local health units that followed it.⁴ While com-
Nina Uzoigwe Entrance of Ospedale Niguarda
paring daily interactions between patients and doctors of these areas to those found within the healthcare system of the United States, the power of touch echoing throughout each case study’s respective patient experiences was captivating. As illustrated by the detailed experiences below, European healthcare systems prioritize human touch more than the US healthcare system, inherently improving the quality of care. This will be analyzed through the examples of Italy and Portugal, with the understanding that they are not representations of the entire European body, but rather distinct examples within this region. To begin, when observing the value of human touch in U.S. hospitals, it is seen that it is extremely beneficial to those in need of ease and reassurance. In her 2018 New York Times article, “The Importance of Medical Touch,” patient Caitlin Kelly detailed the experience of receiving a breast biopsy where her left breast was exposed through a hole in a table.⁵ Kelly recounts that, “several hands reached for what’s normally a private and hidden body part and moved it with practiced ease.”⁵ Fearful of the procedure, she wept throughout the hour, but a nurse “gently patted [her] right shoulder
and the male radiologist, seated to [her] left and working below [her], stroked [her] left wrist to comfort [her],” actions that she was ultimately extremely grateful for since she knew that this was otherwise a routine procedure.⁵ Most important to Kelly was that her anxiety was never downplayed or disregarded by medical personnel, which she was highly appreciative of. Likewise, this level of compassion was demonstrated in care within Northern Italy, specifically in Ospedale Niguarda. While shadowing an oncology resident in this general hospital, I witnessed how this was offered to a 68-year-old male patient suffering from Stage IV bile duct cancer by a resident, genuinely fueled by his mission to deliver the best treatment available to all of his patients. He wanted to give this patient documentation to sign, detailing the terms of compliance for experimental research. When walking into his patient’s room, this resident sat down on the hospital bed and pulled up a table. The patient was shocked when the resident lay the papers in front of him in an orderly fashion while engaging in cordial conversation. The patient gradually became exuberant upon reception of this level of care and concern, becoming
more responsive to the details of the agreement as the resident reasoned through every clause. Each page was thoroughly explained with the patient’s concerns immediately addressed, and later that day, the demeanor of that patient was enlivened as he strolled up and down the halls in a pair of sunglasses, engaging in conversation with a huge smile on his face, despite his frail condition. Finally, in Portugal, specifically in ULSM Matosinhos, this level of involvement was seen in its Emergency Department, where a 20-year-old female limped into the Day Surgery Room with a 10mm abscess behind her right knee. The area was blackened by inflammation and the slightest pressure applied to the site made her scream with tears rolling down her face. When the head surgeon of the department attempted to inject a local anesthetic to the abscess and drain the pus with a razor blade, the patient’s entire body trembled in anguish and sobs as she jolted away upon contact of the needle and blade with her leg. It wasn’t until another surgeon stroked and held her hand, turning her head away from the cause of her discomfort, that her wails became muffled and the procedure was executed. Although she later admitted that the pain was worse than giving birth to her child, she was able to endure her agony with the support of human touch.
devices, cutting down one-on-one time with their patients. Abraham Verghese, a physician who works in a Stanford center that is focused on the human aspects of medical care, stated that this implementation has given rise to what he coins to be the “i-patient,” an icon represented in the computer, and the real patient, the patient on the hospital bed? With attention partly averted to computer screens, medical personnel have inherently created this division during patient contact, specifically during diagnosis and treatment. Having these two separate entities places less emphasis on using the display of human compassion and presence as a means of providing the best care. The focus has shifted towards making sure that the patient in the online interface has all the appropriate fields and documentation filled out, rather than engaging in conversation with the patient who arrived to be seen. In Verghese’s TEDGlobal 2011 speech, he explained that the i-patient typically receives “wonderful care all across America” while the real patient is often left to wonder, “Where is everyone? When are they going to come by and explain things to me? Who’s in charge?”⁷ Although the utilization of online electronic health records has provided efficient means for addressing the current necessity of supplying extensive resources, this demon-
The impartation of presence by the caregiver is a psychological necessity for a working doctorpatient relationship to take root.
However, although human touch has this universal uplifting effect in the doctorpatient relationship, it is also essential to note that the culture defines the boundaries of this said connection, especially in the division seen in U.S. hospitals. According to Atul Gawande in the New Yorker article, “Why Doctors Hate Their Computers,” more than ninety percent of American hospitals computerized in the past decade and adopted software in the hopes of utilizing a single platform to perform everything health professionals need to become greener, better, and faster.6 These actions include but are not limited to recording and communicating medical observations, sending prescriptions, ordering tests and scans, viewing results, scheduling appointments, and sending insurance bills, all through one medium? Physicians and nurses have become swamped with overcoming the learning curves for using these
strates that there is a disjunction between the carer and the sufferer in America due to the cultural drive to become economically better and faster, especially in a country that has a growing populace and is driven by financial incentives. According to a study completed by the Athenahealth, a private company that provides network-enabled services for healthcare in the United States, practices that “increased portal adoption rates by 20 [percent] or more over 12 months saw a median increase in patient pay yield of nearly five percent,” bettering overall clinical practice financial sustainability.⁸ Unfortunately, this creates a trade-off between doctorpatient contact and streamlined systems, building up walls of computers between these two entities at an alarming rate.
On the other hand, when referring to past experiences in European hospitals,
the dynamic between the physician and patient was more centered on human touch, a defining aspect of both cultures. Within Ospedale Niguarda, the attending head physician in each of the eight departments I shadowed would often complete the department’s rounds with the head nurse, residents, and other doctors. They took the morning and early afternoon, after a short debrief, to meet and greet each patient and ask questions about the progression of their recovery, personally contributing to the quality of their care and taking notes on pieces of paper. It wasn’t until they were done with these rounds in the afternoon that each resident and doctor sat in a separate room full of computers to fill out medical observations and make official requests about treatments. Since 1991, Ospedale Niguarda developed and uses its own portal as an internal application that retrieves and gathers administrative patient specific data onto a centralized interface, “standardizing communication and process interaction between the different hospital units.”⁹ But many of the doctors explained that the focus of attending patients at their hospital beds was to hold a conversation and use their hands to do their job, clearly drawing a boundary between logging in patient care and giving their patients the attention they need. Likewise, when reflecting on the healthcare system presented in Matosinhos, Portugal, specifically USLM, it is seen that this value is highly treasured as well. Along the same lines of U.S. hospitals and Niguarda Ospedale, the SNS Portal (Portal de Saúde) forms the core of several projects developed by Portugal’s National Health Service, the Serviço Nacional de Saúde (SNS).10 However, this was created in hopes of “transforming the way information about health services and resources [is] shared” with Portugal’s people, centralizing the usage of the system for improving citizen oriented communication.10 By redirecting the purpose of having this system to bettering the lives of those involved in healthcare, it is clearly demonstrated that more focus is placed by administration on creating a clear line of communication for its people, preserving an attribute of human touch in technological advancements. This thereby makes human compassion a priority. This is so much so that when observing how integrated human touch is in day to day care of USLM, there are extra steps taken to enforce precautionary measures. In fact, when traveling from one in-
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Unidade Local de Saúde de Matosinhos (ULSM), a hospital in Portugal.
patient room to another in the Department of General Surgery of ULSM Matosinhos, one would find a series of large yellow and red signs that signal to the medical personnel within this department that a gown and mask should be utilized upon entry to these rooms or curtained off areas, an addition that was not seen in the inpatient rooms in Ospedale Niguarda. With Portugal being one of the most friendliest countries towards residents worldwide according to Expat Insider (one of the world’s largest and most comprehensive surveys on life abroad), the Portugese culture comes across as extremely warm hearted, where a kiss on each cheek is a social normality.11 It would therefore be understandable that these signs would be utilized as an extra layer of precaution in an environment where a warm embrace is considered second nature. Thus, it is seen that in the midst of adopting computer systems into the medical environment, human touch still has a cherished place in the European day to day practice. One may argue that medical efficiencies have more value than the human touch exhibited during time spent in hospital rooms and should be prioritized because it increases accuracy in diagnosis and allows for more medical issues to be addressed. According to Richard Harris in “As Artificial Intelligence Moves Into Medicine, The Human Touch Could Be A Casualty,” depending on how automation is employed, “it can help reduce medical errors and potentially reduce the
cost of care.”12 Even Verghese, in this same article, expresses hopefulness that artificial intelligence can help to sort through the clues gathered during medical treatment since “medicine is messy.”12 However, being present in a patient’s recovery matters a great deal, especially to a woman with breast cancer who, after finding one of the world’s best cancer centers, decided to go back to her private oncologist in a small town in Texas. To her, although it had a “beautiful facility, giant atrium, valet parking, a piano that played itself, a concierge that took you around from here to there,” they did not touch her breasts.7 The doctors had no need since they scanned her inside out and understood the nature of her illness at a molecular level, but she yearned for her private oncologist who “everytime she went, examined both breasts including the axillary tail, examined her axilla carefully, examined her cervical region, her inguinal region, [and] did a thorough exam.”⁷ This level of attentiveness from her doctor was what she sought, as her concerns and her state of well-being were readily addressed with acknowledgement.⁷ Hence, even though a patient may long to be evaluated at the best level of care, doctors and nurses can’t merely be supplements to these machines. Although technological advancements make significant improvements in the competency of hospitals, these advancements cannot move forward and maintain their beneficence without recognizing that the impartation of presence by the caregiver is a psychological necessity for a working doctor-patient relationship to take root.
In closing, then, human touch plays a significant role in how a person internalizes their illness and progresses with treatment. As demonstrated by the told experiences found within the United States, Italy, and Portugal, human touch is extremely valued and beneficial to those in need of reassurance because this act of presence has the power to reanimate and make the pathway for recovery appear less intimidating. It is important to note that their respective cultures define the boundaries of implementation for this said relationship because their values impact what’s carried over amidst technological advancements. Although efficiency and professional competency are essential components for caregiving, quality of care has much to do with the presence of a doctor-patient relationship as it does with technological, pharmaceutical and financial facets of healthcare. It is only when advancements found within these fields account for this treasured interaction in patient care that the healthcare system across all borders can truly be elevated. www Nina Uzoigwe is a junior at Harvard College, concentrating in Bioengineering with a Secondary in Global Health and Health Policy. She is a proud EMT and Health Peer Advising Liaison who loves to serve her community. Nina can be contacted at nuzoigwe@college. harvard.edu.
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WHO LIVES AND WHO DIES The American Response to the AIDS Epidemic among African Americans and Continental Africans BY DEBBIE DADA VOLUME 7
ow we think about disease determines who lives and dies.”1 This is a quote from 1986 by Evelynn Hammonds, a scholar of the History of Science and African-American Studies. How does the manner in which disease is perceived affect the level of governmental and community mobilization to help afflicted populations? How might conceptions of disease be differentially applied to demographic groups? And how might this affect the procurement of resources to mitigate their suffering? In this piece, I will investigate the nature of American relief efforts for African-Americans and continental Africans suffering from Human Immunodeficiency Virus and the associated Acquired Immune Deficiency Syndrome in the 1990s and early 2000s. HIV/AIDS has profound impacts on both of these populations historically and presently, not only in terms of health, but also in terms of social and economic wellbeing. I plan to evaluate how the American conception of this disease as biological, social, and political was formed and applied in similar and distinct ways to HIV-positive individuals living in both Africa and the United States. To do so, I will investigate how the disease was perceived, how the different populations were perceived, and then how these perceptions translated into tangible health interventions. The comparison of American perceptions and responses allows us to investigate how disease and race factor into one’s status as a citizen. In this essay, I argue that the key differences in the nature of the American responses are reflections of the differing assumptions about members of these groups. The similarities are informed by perceptions of the black race. The Disease HIV/AIDS defined the health landscape in many ways in the 1990s and 2000s as its prevalence reached epidemic proportions. First identified domestically among heroin users and homosexual men, the disease gained–and still maintains–a long history of stigma.2 Throughout the 1980s, there was a significant and increasing proportion of members of these heavily stigmatized populations suffering from the disease, and according to a 1986 editorial in the New York Times, their identities as members of these groups were “overemphasiz[ed]” by the media.3,4 We now know that HIV is a virus that attacks the immune system; is spread primarily through sexual contact; and can also be transmitted through the sharing of infected needles, blood products, or from mother to child. Its association with intravenous drug users and homosexual men is in
part to blame for the countless incorrect theories on the etiology and transmission of the disease that reinforced existing negative stereotypes while affirming stigmas. Televangelists and laypersons alike believed it to be the “wages of sin,” and a result of “immoral behavior” and “sexual irresponsibility.” This was due to the fact that HIV was sexually transmitted and most frequently found in those engaging in homosexual sex.1,5 The association of the disease with punishment from God among Americans decreased compassion and increased blame on the victims suffering from HIV. There were varied beliefs among Americans on the transmission methods, and many even believed that it could be transmitted through casual contact. This led to the sequestration of people living with AIDS or HIV in some public settings such as prisons.3 When President Ronald Reagan was asked if he would allow his child to attend school with an AIDS patient, he explained that although “it is true that some medical sources had said that [AIDS] cannot be communicated in any way other than the ones we already know and which would not involve a child being in school,” he could “understand both sides” of the argument.6 This notion of easy transmission produced fear among the uninfected of social groups associated with the disease, further rationalizing the animosity and exclusionary behaviors in which they engaged. This sentiment is encapsulated in the words of an anonymous surgeon referring to the epidemic in 1987: “We used to hate f****** on an emotional basis. Now we have good reason.”5
The view of Africans as biologically and culturally inferior has been a staple in discussions of racial science among American scholars for over a hundred years.
The Continental African Epidemic
The American perception of continental Africans suffering from HIV/AIDS notably highlighted ideas of insignificance and inferiority. As the epidemic progressed through the 1980s and 1990s, it moved from central and eastern African nations to the South and West.7 The health systems of these low-
income countries did not have the infrastructural capacity to handle the influx of infected persons, and, as such, access to adequately resourced “hospitals, clinics, health staff, and consumables” was very limited.7 The manner in which Americans viewed this epidemic that was devastating many countries on the continent can be evaluated by assessing scholarly literature as well as historical engagements on the continent. The lived experiences of people suffering from HIV/AIDS were hardly a concern of the US government, nor did these experiences serve as the main motivation for increased relief efforts, instead it was nationalistic concern that provoked action. As Jeff Gow, a health economist researcher with a concentration on HIV/AIDS stated “until the US government perceived the African AIDS epidemic as a threat to US interests, the US response to the crisis was limited.”7 It was only when it was evident that the epidemic had the power to shake the foundations of African regions and render them more unstable did tackling HIV/ AIDS become a major concern of American officials and granting associations. This was because only then did it pose a threat to trade relationships and loan agreements that affected the American economy. This is further established by the initial reluctance of the government to regulate the cost of pharmaceuticals that might help quell the epidemic because of the potential economic loss for American businesses.7 Further, the concern of threats to national security posed by infected persons trying to immigrate was also notable. As Priscilla Wald, an expert on cultural anxiety and contagion explained, American outbreak narratives regarding HIV often implicated contact between “innocence and danger, the innocent—generally white, Western, and economically privileged—come in contact with a dangerous, disease-carrying ‘other’—primitive, perverse, and dark.”8 As such, it was not until the latter half of the 1990s that the US acknowledged and became concerned by the “social, economic, and governance impacts of the epidemic.” Only after this change in viewpoint did the efforts of the government in the early 2000s have an “explicit international focus.”7 Prior to the establishment of USAID in 1961, much of the foreign aid carried out by America was facilitated by wealthy and powerful foundations. Evaluating the work of these foundations, in tandem with that of the American government, allow us to paint a comprehensive picture of American engagement with the continent of Africa.
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The Rockefeller Foundation, for example, had the economic capital to partake in foreign aid initiatives. The first two monetarily significant involvements they had with the continent were in family planning efforts. The first was a grant issued in 1985 for scientists to conduct “biomedical research relating to the use of contraceptives” in Africa, Asia, and Latin America. The second was issued in 1987 to 10 Sub-Saharan African nations to “collaborate on family-planning procedures” with a focus on decreasing the risk of AIDS transmission.9 Efforts to emphasize the need for family planning services for only certain populations has a history of being done more to control population sizes of undesirable people than to decrease the spread of disease in America. This can be seen in sterilization efforts undertaken by the US government domestically in the case of immigrants, people of color, and the mentally ill in the early to mid-twentieth century.10 Wickliffe Draper, a wealthy American eugenicist, donated two grants to the Human Betterment League, which financed state-run sterilization programs for “poor black women” and donated 100,000 dollars to a medical school in 1950 on the condition that it taught students the importance of “therapeutic sterilization.”11 The work of the Rockefeller Foundation on the continent continued in the American legacy of limiting the reproductive efforts of individuals deemed ‘unfit. The view of Africans as biologically and culturally inferior has been a staple in discussions of racial science among American scholars for over a hundred years. These notions had significant implications for American foreign aid and development efforts. Racial science was the subject of much of the discourse in the medical and political community during the twentieth century. In 1916, Americnn lawyer Madison Grant published The Passing of the Great Race, which argued that “blacks and inferior immigrant groups” were of a “lower” stock and, thus, advocated for immigration restrictions.11 The book was very well received by American political thinkers, and was even quoted by 54 legislators, in addition to garnering commendation from President Theodore Roosevelt as being “the work of an American scholar and gentleman.”11 In 1917, leading psychiatrist John E. Lind published a journal article entitled “Phylogenetic Elements in the Psychoses of the Negro,” which used evidence based on African ethnographies to argue that Africans were an innately “primitive” people.12 This racial science was also the basis of much discussion on the benefits of segrega-
Flickr HIV is usually diagnosed by testing blood for the presence of antibodies to the virus.
tion later in the century. Robert Patterson, the founder of an American white supremacist organization in the 1950s, explained that “integration represents darkness, regimentation, totalitarianism, communism, and destruction.” These sentiments were echoed by Wickliffe Draper and others who foregrounded the innate inferiority of African and African-descended people in arguments against integration.11 In a piece by historian Martin Summers, he argues that the belief among American medical professionals in the nineteenth and twentieth centuries that Africans had delayed “biological development” and, therefore, like animals, “operated on instinct” affected how they were treated with respect to mental illness.12 This notion that Africans could not be expected to think logically for themselves implied that they required guidance from other people who were sophisticated enough to know better. These assumptions informed American development policy in notable ways. President Harry Truman in his 1949 inaugural speech explained that it was America’s duty to “make available to peace-loving peoples the benefits of our store of technical knowledge in order to help them realize their aspirations for a better life”13
This presentation of Americans gifting to members of the developing world the knowledge that they aspire to have but were helpless to achieve on their own is paternalistic. This is also reminiscent of colonialist perceptions of Africans as childlike–having much potential yet unable to fully actualize it on their own without the help of the wiser members of the West.14 It further established a picture of Africans as “lacking in historical agency” due to their “powerlessness, passivity, poverty, and ignorance,” as described by anthropologist and development theorist, Arturo Escobar. The Governmental Response to the Continental African Epidemic The perceptions of Africans suffering from HIV/AIDS as insignificant and inferior informed the manner in which the American government structured their aid efforts. Specifically, it resulted in a late response to the international epidemic and neo-colonialistic control. Because the US President’s Emergency Plan for AIDS Relief (PEPFAR) was the most significant element of American international AIDS relief efforts, this will be the focus of my evaluation. As Gow explained in his 2002 report, although USAID was one of the major contributors to
the fight against AIDS in sub-saharan Africa, “even more resources should be forthcoming,” and the level of aid received in the 1980s and 1990s was only a fraction of what was needed, and indeed a fraction of what the US government was capable of giving.7 The neo-colonialism in the aid efforts can be seen in the funding mechanism, level of control, and language used in PEPFAR. PEPFAR is a bilateral funding program wherein funds go directly from the US Treasury to specific other states, rather than being funneled through other multilateral agencies such as the UN, World Bank, or Global Fund.15 This is notable because this type of funding scheme enables the US to “maximize its leverage with other countries through the funds” available while “multilateral venues do not possess the same top-down leverage.”16 Therefore, by utilizing this mechanism of funding, the American government has the power to exert control over the actions and activities of sovereign African nations.
behavior by propagating American views on prostitution. Although the report did condemn practices universally understood as immoral, such as sexual violence and exploitation, it also contained many American-backed ideals, ideals that emphasized what Americans–and not necessarily the rest of the world–thought were good moral principles. These included the promotion of “monogamy and faithfulness,” “reduction of casual sexual partnering,” and the condemnation of “widow inheritance.”15
As the domestic epidemic progressed, the African-American community not only experienced the disease in higher numbers, but they were also more likely to die from it. To make matters worse, this disparity was largely ignored by journalists. By 1987, the average life expectancy in America of a Black person diagnosed with AIDS was 19 weeks while that of a white person was two years.1 Additionally, a Black woman was 13 times more likely than a white woman to become infected.1 Regardless, the mainstream white press made very little mention of the Black experience. Reports during the mid1980s on the spread of the disease to heterosexual populations implied that it was to “white, middle class, non-drug using, sexually active people,” actively neglecting the fact that up to 90% of affected heterosexuals were Black or Hispanic.1 As reporter Evelynn Hammonds noted in a 1986 article, “the vast disproportion of people of color in the AIDS statistics hasn’t been seen as a remarkable fact, or as worthy of comment.”1
Medical articles throughout the 1980s supported the notion that the HIV-afflicted African-American population, just like the rest of the Black race, was made up of ‘diseased, debilitated and debauched’ people who had ‘only themselves to blame.’
In the details of the PEPFAR provisions, we can see that America not only had this power, but actively made use of it in a manner that relied on assumptions of Africans’ inability to think for themselves. This is clearly implicit in the notions of African inferiority previously discussed. The US does this by importing Western ethical frameworks and cultural practices in the name of HIV/AIDS prevention. In the congressional report with the details of how PEPFAR funding could be utilized, it was determined that a third of all prevention efforts be dedicated to “abstinenceuntil-marriage” education programs, which catered to American religious ideals and was in opposition to “well-regarded research,” research that “established that this kind of sex education does not lower the risk of contracting HIV and other sexually transmitted diseases.”2,15 Additionally, the report purported that “prostitution and other sexual victimization are degrading to women and children,” and NGOs must therefore have a “policy explicitly opposing prostitution and sex trafficking” in order to be eligible for foreign funding.15 This policy worked against African organizations that adopted harm reduction policies in an effort to preserve the agency of individuals and avoid morally policing their
The African-American Epidemic The American perception of HIV+ African-Americans was informed particularly by notions of insignificance and blame. The influence that the mainstream white media and American public health entities possessed, as well as the power that they used, allowed this perception to have profoundly negative impacts on the African-American experience with HIV/AIDS. The insignificance of African-Americans living with and dying from HIV/AIDS is seen in reporting by the medical and mainstream press. Neglect of African-American HIV patients can be seen from the very beginning of the epidemic in a 1981 CDC epidemiologic notice on five deaths from the associated condition of pneumocystis in California.17 These deaths occurred in young homosexual men who were otherwise healthy, which was “unusual” since pneumocystis is most commonly found in the immunocompromised.17 Although there was no explicit reference to race, health journalist Linda Villarosa noted that it was implied that these patients were all white, thereby excluding two additional reported cases of pneumomycosis that occured in a healthy African-American homosexual man and a Haitian heterosexual man.2 The omission of the Haitian patient is likely due to his sexual orientation, as the editorial note accompanying the report pushed to emphasize “an association between some aspect of a homosexual lifestyle” and the disease.17 However, there does not seem to be a valid epidemiological explanation as to why the African-American was not included.
African-Americans were also viewed as responsible for their contraction of HIV/ AIDS because of their ‘impure’ actions, and this blame affected how patients were treated. There were three prevailing stereotypes of African-Americans that informed why Americans blamed them for having the disease: (1) that African-Americans were simply prone to disease, (2) that African-Americans were sexually irresponsible; and (3) that African-Americans were frequent drug users. There has long been an association between Black bodies and disease in American history.1 Historian Tera Hunter notes that since the Civil War period, both health workers and the general public believed that African-Americans had a “predilection for insanity, typhoid fever, syphilis, alcoholism, bodily deformities, idiocy,” and other illnesses.18 Moreover, medical articles throughout the 1980s supported the notion that the HIV-afflicted AfricanAmerican population, just like the rest of the Black race, was made up of “diseased, debilitated and debauched” people who had “only themselves to blame.”1 The placing of blame on African-Americans living with HIV was further rationalized by the stereotype of Black people as immoral. This stereotype was based on perceived sexual deviance and propensity for
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drug abuse. In fact, a 1989 TV documentary investigating why Black and Hispanic populations were disproportionately affected by the epidemic purported that the main reasons were their “sexual proclivities” and drug use.19 It highlighted a quote from a patient that was likely meant to characterize most, if not all HIV+ people: “it’s like we just live for danger.”19 The sexualization of Black bodies, and especially those of Black women, has been a prominent facet of racial science for centuries. AfricanAmericans were known to be “more fragrant and loose in their sexual behaviour” because the “smaller brain of the Negro had failed to develop a center for inhibiting” it.1 Hunter writes, “whites considered African-American women as promiscuous by nature.”18 Sexual deviance was seen as not just common among Black people, but “in their very nature.”1 A 1987 article in The Atlantic Monthly made explicit these associations with perceived immoral behaviour and Black bodies. The author presents a picture of a race “riddled with venereal disease” and living in communities characterized by the “pervasive use of drugs.”1 It is notable that the author uses no statistics to support these claims but rather presents them to the audience as commonly understood truths. Rather than omitting statistics entirely, a 1987 article published in The New York Times manipulated prevalence rates in a manner that further established the connection between drug use and AfricanAmericans. This was done by only including the high percentage of drug-related HIV cases in the Black and Hispanic community and not the percentage of Black and Hispanic cases that were drug related.1 This manner of presentation leaves the reader with an impression of the much less druginfluenced white community stacked against promiscuous, low-life minorities. The Governmental Response to the African-American Epidemic The American response to the domestic epidemic among Black citizens was delayed
By 1987, the average life expectancy in America of a Black person diagnosed with AIDS was 19 weeks while that of a white person was two years.
and inappropriately small due to the aforementioned perceptions of the suffering patients’ insignificance and deservingness of blame. Greg Millett, a former policy advisor at the White House, stated that “during the Bush years [1980-1989], the administration dropped all pretense that they cared about AIDS in this country.’’2 Furthermore, there was great frustration among both activists and Black people living with AIDS due to the lack of involvement of the rest of the Black community in domestic AIDS initiatives. This frustration was so great, in fact, that in 1987, a Black, HIV+ activist named Craig Harris stormed the stage during the American Public Health Association’s AIDS session, in which not a single person of color was invited to participate, and shouted to the crowd, “I will be heard!”6
resort payment system for HIV care.20 The Act was named after Ryan White, a white hemophiliac teenager diagnosed with AIDS after a botched blood transfusion months prior to the Act’s passing.21 While hundreds of thousands in Black communities were contracting and dying from the disease for years prior, this one white teenager’s experience galvanized the nation in a way their experiences could not. Not only was this choice of a name an example of the government actively ignoring the struggle within the Black community, but it did not reflect the identities of most of the people it served. Before this Act was passed, in 1987, the Health Resources and Services Administration produced a similar, much smaller-scale AIDS Service Demonstration Program.22 A report on the program stated that 50% of the clients were minorities, 57% of whom identified as Black.22 It was therefore reasonable for them to assume that this service would have great patronage among communities of color. Their choice not to acknowledge the acutely difficult experiences of Black people was deliberate erasure.
It was not just in name that the CARE Act neglected to consider Black populations adequately, but also in practice. In the congressional report for the disease, there The 1990 Ryan White Comprehensive is not a single mention of Black, AfricanAIDS Resources Emergency (CARE) Act is American, or Hispanic people. In fact, the commonly seen as a major step in addressing only mention of “the minority community” the domestic epidemic. This Act included a was in a list of different populations that commitment of approximately 175 million special projects were approved to serve, dollars for the subsequent five years to low- a list that also included people living in income and uninsured populations as a last- “rural areas.”20 There were, of course, multiple provisions for “special services” for those living with hemophilia, even though as of 1984 only 1% of American AIDS victims fit this profile.23,20 In a 1995 report on the Act focusing on “Access to Services by Minorities, Women, and Substance Abusers,” the effect of the Act’s lack of focus is clearly demonstrated. The report begins by detailing the extent of the epidemic in minority communities: Flickr in 1989 “AfricanAmericans and HisGrave of Ryan White, a young Caucasian hemophliac patient diagnosed with HIV, after whom the Ryan White panics accounted CARE Act was named.
for 43% of cumulative AIDS cases” and by 1994, 56% of new cases were in the AfricanAmerican community.24 Minorities utilized the services at rates similar to their proportion in the HIV epidemic, but there were numerous barriers to access as detailed by HIV+ individuals who were interviewed. Such barriers included “a reluctance to obtain care from a provider of a certain racial or ethnic group or who primarily serve[d] a different racial or ethnic group than that of the person seeking services.” There was also “a lack of trust of the medical community.”24 By 1993, three years after the Act had passed, HIV became the leading cause of death for African-American men ages 25-44 and the second leading cause for women of this same age group.6 Only after years of continued suffering, as well as persistence and sacrifice on the part of Black activists, did the government make significant efforts to address the unmet needs of Black communities in the epidemic. This came in the form of the Minority AIDS Initiative of 1999, which was a “166-million[dollar] initiative to address HIV and AIDS in racial and ethnic communities” hosted within the CARE Act programming.6 In the first report on the “Implementation of the New Minority AIDS Initiative Provisions,” explicit mention was made of the manner in which the epidemic had “disproportionately” affected minority communities.25 This initiative was one of the first initiatives with significant funding from the federal government that aimed specifically to improve the health outcomes of racial minorities in light of the epidemic. Conclusion It is evident that Americans perceived Africans’ suffering from HIV/AIDS as insignificant and inferior which led to a delayed response to the epidemic laden with neo-colonialist features. The perception of African-Americans living with the disease as insignificant and worthy of blame for their diagnosis led to a small and delayed response to the epidemic ravaging countless communities. These groups were both viewed as insignificant and received a delayed governmental response to their suffering. I propose that this was due to the most salient shared characteristic of both populations: their race. The implications of race on health status can be seen in numerous disparities that persist to this day, including rates of HIV infection, heart disease, respiratory illness, and countless other illnesses that have higher prevalences in Black com-
Flickr It was not until 1999 that the American government had an initiative specifically aiming to increase the HIV screening and treatment rates of African-Americans.
munities. As we can see from this analysis of the HIV epidemic, the manner in which those in power view the importance of one’s biological, social, and political wellbeing is bound to have grave consequences on one’s health outcomes. And this power is not only exerted over citizens through laws, regulations, and public policy. America’s status as a global superpower means that its extensive resources translate to great influence throughout the world. How the US behaves has implications for the manner in which other nations do as well. Therefore, a change in the assumptions held by Americans of Black people is crucial to addressing these disparities. This is a verifiably difficult task, as anti-blackness is woven into the foundation of almost every institution in this nation, but it is an important subject to address nonetheless. Where the perceptions of Africans and African-Americans differed was that African-Americans were seen as guilty and deserving of their diagnoses while Africans were so helpless and inferior that they could not avoid it. I hypothesize that this divergence stems from what is perceived as the life experience of African-Americans versus Africans. Some believe that all citizens–white, Black, or otherwise–experience the same America. They believe that since African-Americans live in the same cities, eat the same foods, and may even go to the same schools as everybody else, their lives and opportunities must be similar. Continuing with this reasoning, if people living in the same America have different expe-
riences, those marked by diseases, drug addictions, or struggles, it must be due to their actions. In other words, it was widely believed that African-Americans’ deviance in action from the white, middle-class American standard of normality is responsible for their plight. In contrast, those living in Africa, or, more pointedly, those living in the homogeneous, poverty-stricken, debilitated Africa that exists only in the imagination of the West, have a different experience entirely. In this imagination, lives devoid of the opportunity, the luxuries, and the experience available only through Western cultural ideals were deserving of not just compassion, but guidance. Whether or not they desired it was irrelevant. Thus, from this study of the US response to the HIV/AIDS epidemic in two Black populations, we are able to see the large-scale effects that the perceptions of race, disease, and place have on government willingness to offer aid. It is the responsibility of government officers, public health officials, and lay citizens alike to pay attention to how disease is experienced differently by marginalized populations. Indeed, the past, current, and future epidemics devastating minority communities are only invisible to some. www Debbie Dada '21 is a History of Science, Medicine and Public Health major from Toronto, Canada. You can reach her at firstname.lastname@example.org
YALE GLOBAL HEALTH REVIEW
An Analgesic in an Impossible Time By Shaan Bhandarkar
he coronavirus pandemic has forced healthcare providers into a difficult ethical gridlock. How do physicians choose which patients to treat with a serious deficit in essential supplies like ventilators? What consolations can physicians offer families who cannot meet their loved ones in their final moments? In many horrific ways, the pandemic has magnified the importance of end-of-life care protocols in relieving the suffering of dying patients. End-of-life care may present some of the grimmest notions of medicine. Discussing death implicitly accepts the failure of medicine; death sounds antithetical to the very curative purpose of medicine. However, palliative care during end-of-life comprises arguably the most important obligation of physicians. Treatments may fail and the prognosis may look abysmal in the course of care, but that does not necessarily mean that medicine has completely failed the patient. Palliative care offers to attend to the pain and emotional needs of a patient and to make the final moments all the more peaceful in an impossible time. In an unprecedented time where death seems to be the most salient product of modern medicine, palliative care may be able to help physicians and patients cope with the current circumstances while setting the foundation for better post-pandemic health care. Confronting the implications of death has been an age-old conundrum in medicine. Despite the sensitivity of the topic, death inevitably accompanies medicine and haunts practitioners of all eras and all cultures. These conversations mostly occurred privately until certain medical cases launched the issue of end-of-life care into the public eye in the late 20th and early 21st century. Dr. Jack Kevorkian, nicknamed “Doctor Death,” was an American pathologist specializing in administering voluntary euthanasia to terminal patients. He would create “mercy machines” which administered a lethal dose with the press of a button for the patient. In Kevorkian’s activism, he asserted a chilling conviction that euthanasia constituted the duty of all physicians. For the medical community, Kevorkian’s arguments struck the ethical core of what it meant to be a doctor. To the shock of the entire nation, one such euthanasia administration aired on CBS’s Sixty Minutes. Usually, Kevorkian’s patients would administer the dose themselves and attest to their consent. However, the ALS patient’s paralysis forced Kevorkian to actively administer the lethal dose himself, for which he was later convicted. Thus, Kevorkian launched the initial “right-to-die” movement with great controversy, claiming that patients should retain as much control of their death as their life.1 The case of Teri Schiavo and the legal
Palliative care exemplifies the humane side of health care, serving the patient’s true needs in their journey to improve the quality of their lives.
dispute between her husband and her parents, regarding the withdrawal of her feeding tube due to her persistent vegetative state, expanded the scope of cases where euthanasia could apply. Schiavo’s case also highlighted the ambiguity in which family members would be the surrogate in decision-making, as well as overall questions of accountability.2 Especially relevant to the case, the medical community could not even agree on whether Schiavo’s questionable state of consciousness actually qualified as living or as a clinical conclusion of whole-brain death. Kevorkian and Schiavo’s narratives would revitalize a discussion on medicine’s role in assisting terminal patients. Later advocacy for palliative care would conflict with that for euthanasia and hastening of death, sparking global debates on the benefits of these two types of end-of-life care regiments. Palliative care is especially distinguished from other branches of health care in its unique allotment of patient autonomy. Palliative care offers a more holistic, multi-disciplinary approach to addressing all the psychosocial needs of a patient for improving their quality of life. Physicians employ palliative care as a synergy of cognitive-behavioral therapy, religious counseling, and medical means of allaying pain. As opposed to being a specialty, it’s more of a style of healthcare that achieved prominence in hospices and the sensitive environs of end-of-life care. However, other branches of medicine such as emergency medicine and oncology have incorporated palliative care to offer similar solace to non-terminal patients. Increasingly more physicians and patient advocates believe that palliative care facilitates more autonomy for patients and their families to make crucial decisions about their health care. Such physicians consider patients and their families as “units of care” to be given accessible and transparent information about end-of-life care options. In many ways, palliative care represents a positive development in health care and its ability to fully serve patients. For many years during the increasing specialization of medicine, patients viewed health care as a depersonalized field. Patients would seem to be objectified in terms of their pathologies, as a list of symptoms to be managed and an expiration date to be marked as necessary. Abraham Flexner, a 20th century reformer who spearheaded the ideals of modern medicine, cautioned for objectivity and theoretical practice. Patient advocates claimed that these very
ideals resulted in producing callous, unempathetic practitioners directly from their experiences as medical students. However, medical schools have responded to a deteriorating public trust in medicine by introducing more simulations of patient contact to emphasize empathy in their medical students.3 Palliative care truly began in Classical antiquity in Greece and Rome, drawing from their rhetoric promoting self-care regimens and an intimate mind-body connection. The Classical world conceived that the practice of medicine should happen in “healing environments” conducive to recovery, a stark contrast to a more commercialized world of medicine now. Hospice care started in Rome and included alternative healing methods like hydrotherapy, music and art therapy, and primitive forms of psychotherapy for healing the body through healing the mind. Unfortunately, end-of-life care and death were tabooed ideas in the Classical world, but that does not make Classical medical concepts completely useless.4 Current palliative care incorporates ancient methods like hydrotherapy as well as music and art therapy, while also prioritizing the emotional and physical comfort of the patient. Palliative care exemplifies the humane side of health care, serving the patient’s true needs in their journey to improve the quality of their lives. However, several discrepancies exist even in a personalized style of medical management like palliative care. While the medical community and patient advocates have clamored for establishing “advance directives,” preferences for withdrawal of emergency medical care in times of incapacitation, only a quarter of Americans bear a living will. Many other patients may deviate from their priorly expressed preferences (such as regarding dependence on life support or “do not resuscitate” orders) once confronted with impending death. Questions of mental competencies, like in Schiavo’s case, can complicate decisions and create accountability issues. If the patient is incapacitated and has not designated a legal proxy for medical decisions, different family members may disagree on how to proceed. Additionally, medical protocols such as opioid treatments treat pain to only limited extents. The inadequacy and often ambiguity of painrelieving protocols encourage the medical community to explore a historical alternative: euthanasia, which means “good death” in Greek. Termed as physician aid-in-dying, physicians can prescribe a lethal dose of a painrelieving drug for the patient to take on their
YALE GLOBAL HEALTH REVIEW
own terms. Palliative care abstains from such a hastening of death and allows death to naturally happen regardless of the pain endured. Some have thus claimed that euthanasia (via physician aid-in-dying) truly allows a patient to decide how they die. Netherlands, Belgium, Colombia, Luxembourg, and Canada have all legalized euthanasia completely. Washington, D.C. and U.S. states like New Jersey, California, Colorado, Oregon, and a few others legalized medical aid in dying after vociferous debates spanning the last two decades. Many physicians advocate for following a primarily palliative approach, with the option (given consent) of resorting to aid-in-dying in drastic cases of pain during active dying. Despite the seemingly noble intentions of such a regimen of care, certain cultures and religions frown upon ideas of physician aid-indying (PAD is favored as a more neutral term for physician-assisted suicide) as bringing about unnatural death through suicide. Even other opponents suggest that physician-assisted suicide could present as a slippery slope. The Heritage Foundation published an op-ed in 2015 claiming that allowing physicians to classify patients as eligible for death and to administer lethal doses under any circumstances could enable transgressions against the marginalized and vulnerable populations, as has occurred in historical eugenics movements
with the mentally ill.5 Such patients may also believe they are financially burdening their families and extracting resources from curative health care. The disability-rights group Not Dead Yet asserted that “assisted suicide laws ensure legal immunity for physicians who already devalue the lives of older and disabled people and have significant economic incentives to at least agree with their suicides, if not encourage them, or worse.” PAD opponents also argue that slogans like “death with dignity” mislead and that a hastening of death would be even more undignified. Especially in cases where the patient is not competent or has been incapacitated, doubt has been cast on the ability of the physician to appropriately inform proxy decision-makers.6 The U.N. Humans Rights Committee has called into question the practices of infant euthanasia in the Netherlands on such grounds, especially since the physician’s opinion is all that can be taken to justify the necessity of euthanasia.5 Thus, PAD opponents believe that aid-in-dying perverts the healing purposes of medicine and severely corrupts the doctor-patient relationship. We can debate the morality of medical euthanasia and PAD, but palliative care truly listens in to the concerns of the patient and their family while making necessary accomodations. Current medical school curricula do not delve too deeply into delivering palliative
care, but such modules could greatly benefit budding physicians in preparing to serve the patient even in the toughest circumstance in medicine: death. Palliative care should also be considered a global public health issue. The World Health Organization supports palliative care as a human right worthy of integration in mainstream medicine, currently instituted with palpable disparities around the globe. 85% of the 56 million yearly deaths occur in developing countries. Research shows that these countries may not be adequately prepared to deliver such care due to lack of specialized staff and limited access to pain-relieving opioids, as high-income countries consume about 92% of medical morphine in the world.7 While end-of-life medical struggles may not be socially constructed in the same way as HIV, AIDS, or malaria, palliative care strikes at a core issue relevant to all members of our growing elderly population. Stigmas around discussing death and disparate cultural expectations further frustrate the global landscape of palliative care delivery. Modern medicine represents the best of mankind’s ingenuity and devotion to helping others, but also perhaps the worst of its arrogance. Rapid advancements in medical technologies like CRISPR/Cas9 have created a sense of invincibility and exceptionalism. Western cultures in medicine shy away from transparent discourse about death, due to these delusions and the understandable sensitivity of the matter. Palliative care offers the missing piece to the puzzle to bring the purpose of medicine to fruition. Our medical procedures and technology may fail and have their limits, but our capacity to help others and make the most of their lives is unlimited. Medicine is not all about prolonging the inevitable or about resetting the clock of life. Especially in this time where we find ourselves in an impossible setting of a pandemic, stories of palliative care delivery can inspire a revolution in peoplecentered medicine. Medicine, in its peculiar position at the nexus of public and private matters, can connect us with our friends and loved ones despite our social distance in these trying times. As the brave and dedicated members of Connecticut Hospice often say, “it’s not how you die, but how you live that matters.” The patient should never be reduced to a list of mere pathologies. Palliative care rightfully exalts patients as a thread of beautiful social narratives that should not be cut off too soon, but celebrated at their conclusion. www
Flickr Dr. Jack Kervorkian, nicknamed “Dr. Death,” at the Washington, D.C., national press club on July 29, 1996.
Shaan Bhandarkar is a rising sophomore in Morse College. Shaan is a neuroscience & history of science and medicine double major from Virginia. He can be contacted at email@example.com
Modelling Equity in Global Health
Using Participatory Action Research to Bridge the Gap Between International Agencies and People in Southern Africa By Sam Brakarsh
lobal health is a paradigm aimed at increasing equity through access to health. However, it is riddled with contradictions. It operates within a hierarchy of power where decisions are frequently made at a great distance from those upon which the interventions are enacted and so the voices of communities are lost. Participatory Action Research (PAR) critiques the flow of information and power, redefining how—and by whom—knowledge is produced. It emphasises lived experiences and focuses on the centrality of community involvement in order to incorporate local voices in policy design and implementation. But this is not a solution. It represents a small aspect of a more complex model change to build community ‘voice’ into a countervailing power to the large global health agencies and distant policy makers. Outlining a Problem: An Exploration of Power Flow in Global Health
A diagram of the flow of information and power between various actors in a global health network.
The story of the PlayPump is a favourite critique of over-romanticised global health quick fixes.1 It was a simple proposal. Constructing colourful merry go rounds in rural African villages connected to water pumps. Every time the children spun the wheel, water would gush into an elevated tank designed as a community reservoir capable of providing for up to 2,500 people. The attraction of the idea drew tens of millions of dollars’ worth of donations and the Non-Governmental Organisation (NGO) set their target at building 4,000 pumps across Africa. But we know how this story ends. Within two years, many of the PlayPumps were found abandoned and, in particularly upsetting cases, communities began forcing children to push the wheel. It became a perverse image of a device built in joyful colours being used as a symbol of oppression. The NGO did not weigh
YALE GLOBAL HEALTH REVIEW
the context in which they built the pumps when conducting their analysis and they did not include communities in the implementation process nor consult them about whether a PlayPump was wanted. It is easy to use this narrative as a bludgeon against the “Western” condescension towards the third world; to see it as a highlight of the first world’s belief that they are able to find solutions in a matter of weeks to challenges African communities have been wrestling with for decades. I do not disagree. The critique often proceeds, ending with the notion that global organisations should learn to resist the ideas of romantic, large scale changes and instead focus on the small shifts for which they can patiently understand the contexts.1 Once again, I concur. However, the foundation of both critiques has the potential to slide into a pitfall. What is a valuable cautionary tale is easily—and frequently—generalised to the entirety of the global health field, reaching the conclusion that the development arena is inherently damaging and cannot work.1 The danger of such an extension is that it overlooks the fact that global health is built upon a more universal structure of abusive world power.2 It is not an isolated arena. Global health is not digging the riverbed, it is a boat flowing down on the water. As such, an argument to restructure the technologies of largescale global health practices is ideologically sound but strategically lame. To achieve such
Academics based in the developed world will often neglect to include partners, place the names of those involved in research on their publications, or ensure that the findings are shared and used by those being researched.
an aim effectively is predicated on changing a far greater system. This is not to say that it is justifiable to dismiss ideology entirely in the name of strategy, but we must find a marriage between these two conceptual frames. In order to develop this union, it is necessary to explore the broader systems of power and information flow operating around global health practice. The figure on page 47 captures an interpretation of the flow of information and power between various actors in a global health network, particularly suited for a Southern African context. Interventions usually have the unique aim of improving the lived experiences of those closest to the problem: the community members. This target audience exists at the bottom of the power ladder. Within the community there is a local structure of power through the village leadership and local health centre committees, upon which point there is a bifurcation of channels of information flow.3 On one arm, the model extends into the governmental system, moving up through the various tiers of administrative health until
Sam Brakarsh A local community health centre in Zimbabwe.
reaching the ministry at a national level. The left arm develops into the international relationship between community, professionals, and larger agencies such as NGOs. It is noteworthy that interactions between the two branches are primarily limited to the upper echelons with one side—the left—holding the purse strings and therefore capable of determining health policy.2
So, when viewing a hierarchy of influence, who is global health for? A key element of this interpretation of power structures are the individual agendas under which the foreign branch operates. Beginning near the top, international agencies have constructed processes where their achievement is validated based on how much work they can complete. They sit comfortably in the matrix of dominance where many agencies are competing against one another for the most weight on the global health arena.2 In turn, their impact is predicated on how much funding they are able to receive. And who are the funders? The United States is the largest funder of the World Health Organisation and companies such as Chevron and Coca-Cola are central donors to The Global Fund.4 An agency working in rural Africa is forced to mould themselves to the frameworks of those who fill their pockets. As such, the voices from above are far more pronounced than those from below.5 The same challenges occur in global health research and academia. The predominant institutions of higher learning in the field are in the Northern hemisphere despite their research predominantly occurring in the Global South.4 When universities make partnerships in the South it is often as a business strategy to brandish their own name just as much as it is to build local capacity.4 Furthermore—and all too frequently—academics based in the developed world will neglect to include partners, place the names of those involved in research on their publications, or ensure that the findings are shared and used by those being researched. It is important to recognise the multitude of counterexamples to each one of these critical claims, but that does not negate what they reveal.6 Researchers are judged with the same emphasis on output that exists for development agencies.2 This relationship has an echo that rings dangerously close to colonialism. It is a form of resource
extraction except the resource is now information and academic clout. This is one of the great ironies of global health: using an inequitable process in an attempt to achieve equity. The value of critiquing the top-heavy dominance in this argument is not to demand that it be flattened; but instead to realise the depth at which its “scientific, programmatic, and policy imperialism” is ingrained not only within itself but within the global system in which it sits.4,7 It is not fruitless to continue this radical pressure in an attempt to limit this dominance, but there is an alternate approach. It is liberating to take the centralisation of abusive power as a given and look to methods of strengthening global health from the bottom up. Building participatory channels of action and communication, beginning at the community level, provides a new lens through which to bridge the gap between policy makers and people. The Participatory Action Research (PAR) Framework PAR is a methodology designed to carry out health intervention and research from the community level up with an emphasis on local agency and context. Its central component is to directly involve those who are affected by the conditions that the intervention aims at alleviating, placing equal emphasis on the dual metrics of science and practice.8 However, the term “participatory” is often hazily defined. It necessitates an exploration of the subjectobject distinction in research as well as an understanding of the roots of parallel systems of knowledge production and transfer.6,9 “Participation” is increasingly accepted by large funding bodies, but they treat it loosely. They take the term to mean any form of involvement with a group other than the professional researchers.8 Although this is a valuable first step, it is a tamed version of PAR and leaves significant room to play into the same forms of control. PAR differs from other research paradigms in its critical examination of the subject-object distinction. Even amidst participation, many research practices assume an objective measurement of society while they themselves are separate from the web of interaction.6 Communities are not a homogenous entity that can be treated as an object of study. In fact, the very term “commu-
This is one of the great ironies of global health: using an inequitable process in an attempt to achieve equity.
nity” can act as a smokescreen for the multitude of various identities and struggles that exist within; drawn along the lines of wealth, gender, sex, race, religion, and age to name a few. As such, recognising the heterogeneity of context means that research cannot avoid how its own social context fits into the web and frames the manner in which they angle their questions. Through PAR, participation goes beyond engaging with local actors, and recognises that they are not objects of examination. They become researchers in their own right, making explicit their subjectivity as part of the social web. One of the challenges with this approach is that, although it is desired in practical contexts, participatory research is often dismissed in academia as an illegitimate scientific method.8 This is not an entirely unfounded claim. By nature of PAR embracing subjective participation, traditional researchers believe that it loses the scientific distance that is required for academic credibility. However, it is also true that the dominant forms of knowledge are resistant to participatory methods because it challenges the status quo of how ideas are produced and communicated.9 Knowledge Production and PAR Looking back to the graphic above, the diagram equates the flow of power to that of information. Although these are not identical concepts, they are connected since power is involved in deciding what information and knowledge is deemed valuable. This, in turn, affects how information is used to impact the lived experiences of communities. However, not all arrows represent the same form of relationship. There is no single matrix through which all knowledge is produced. Different cultures and levels on the diagram have separate channels of information presentation. The challenge occurs when those in positions of global influence—the funders, international agencies, researchers, and policy makers in this case—deem one form of knowledge transfer as valid while dismissing alternatives.
Policy-makers and researchers need to be sensitized to a different perception of communities: they are not merely the bearers of problems that demand responses, but are stores of knowledge in their own right
It is one thing to outline this proposal for the engagement with alternative means of dialogue in global health but, when left as a theoretical lens, the critique remains lame. A valuable example grounded in the Southern African context is the use of oral traditions and art as a means of sharing and understanding knowledge production.9 Historically, oral poetry and art served as a medium for political accountability and communication. Under the rule of Mzilikazi—the famed 19th century southern African King and founder of the Ndebele tribe—oral poetry was very prevalent. It was the only channel through which criticism of his leadership and rule was tolerated. The oral poets acted as the spokesmen—and, unfortunately they were indeed predominantly men—of the people and they used the medium to voice their concerns up the chain of power.10 Since this form of production is not written nor argument based in a manner that is accepted in the current global health framework, it is often forgotten. A present-day manifestation of this method of communication and how it can be incorporated in global health discourse arises in a Malawian famine.11 Hunger as a technical issue differs from hunger as an experience. The experiences provide a lens into social dynamics that are often missed by conventional quantitative research. In order to synthesize the two components, researchers looked at the songs sung by Malawian women during the crisis. They revealed the particularity of their suffering as they sang about men travelling far distances to find food and then settling with other women in areas where it was more abundant, leaving their wives and children behind.11 The researchers engaged with a secondary, culturally bound form of knowledge and, in this way, developed an understanding of context and complexity that would otherwise be lost. This incorporation of existing modes of articulation is a first step. It falls in the realm of well-constructed ethnography that effectively transposes these artistic, experiential forms of expression into the language of the dominant. However, the element of participation is not fully pronounced. A prominent artistic example of using similar foundations in a participatory framework is Theatre of The Oppressed developed by Augusto Boal in the Brazilian barrios.12 The approach uses theatre as a means of dialogue, using community members as both actors and audience.
YALE GLOBAL HEALTH REVIEW
It breaks down the performer/spectator barrier by presenting problems without solutions and leaving the gathering to “discuss” the solutions by stepping into the arena and developing various possibilities through performance. In the Southern African context, this is being used in chief meetings to strengthen systems of accountability and channels of communication.6 This is one of many approaches to research and action that is participatory, providing full respect to the community member as both researcher and actor, using local channels of knowledge production and experience. In this manner, PAR emboldens the arrows at the base of the power/information flow graphic. It provides mechanisms for community members to metaphorically—and literally— speak. Strengthening this link is a necessary but not sufficient step in improving the equity in voice across the global health landscape. It acts as a subtle countervailing power to the aims of the larger, more removed actors in the system for those who chose to listen. It is at this point where PAR begins to falter when in conversation with larger structures. People at the community level are aware of what they need for their own health but they are less aware of how their personal health fits into the larger structures of power and accountability.13 Therefore, they are unsure of how to communicate the information that is beneficial to policy makers.6 As a result, people higher up the chain of command—in both the national and international branch— need to listen. However, in this process, policy-makers and researchers need to be sensitized to a different perception of communities: they are not merely the bearers of problems that demand responses, but are stores of knowledge in their own right.14 It is important to recognise that these “sensitised” people exist. The critique on global health programs and institutions is necessary only insofar as it finds the cracks and chasms to fill while recognising that there is still firm soil around them. There are many conscientious global health projects, leaders, and institutions in positions to listen to the expressions of communities who act as a check for largescale practice. It is the role of PAR to channel local voices in these directions. Limitations of PAR It is naïve to assume that PAR can eliminate a longstanding trend of power abuse. It strengthens the community’s ability to mobilise but, in many regards, they will still be at the whim of policy makers and large agencies.
Sam Brakarsh A mural on a local community library in Zimbabwe that was developed after a three day community workshop asking the question: “what is your vision for change?”.
Looking to the graphic, civil society mobilisation, political accountability and democracy among many others on the right prong are vital. And, on the left, reduction in funding and research agendas associated with a global system of output obsession are equally necessary. Focusing on PAR does not permit anyone to forget the relevance of all other agents.13 A second key limitation is that PAR acts in opposition to prevailing discourse in both policy work and academia and so will continue to be dismissed on a larger scale. Such a research approach is significantly more timeintensive and is less likely to reveal silver bullets in pursuit of which some agencies have built their bureaucracies. Additionally, the outputs are—intentionally—entrenched in a particular context meaning that research is challenging to generalise. This is complicated further by the fact that it is difficult to assess the rigor of PAR projects and so the scientific community is prone to dismissal.8 PAR has noteworthy success on small scales, bringing communities and even district councils together to address collective problems in an empowering space.6 However, this is where the reach of PAR traditionally stops. There are few examples of PAR being enacted on a broader landscape, let alone as a mechanism to change a global paradigm from the bottom up. As a result, this is not its predominant intention. It is a means of community engagement that provides a substitute to the prevailing channels of intervention.
Conclusion: Modelling Equity Global health strategies are not devoid of abuse. In the last few decades there has been an outburst of valuable self-reflection on how its potential for harm stands on near equal footing with its potential for significant world benefit as a force for equity. PAR acts as an alternate conception of community based global health in a manner that redefines the production and framing of knowledge.15 Equity is not limited to resource allocation. Treating all people and communities with respect and ensuring local agency is a health intervention in and of itself.16 As global health practitioners continue to reflect on their role in a larger system, the recognition that equity in process and not merely an objective is imperative. Global health must model equity with the same fervour that it claims to fight for it. Perhaps with this paradigm shift, PlayPumps would not have gained so much traction. The direct needs of the communities would have been voiced and heard, and processes of participatory change would have begun. The needed shift is not necessarily that large agencies should dream small, as Hobbs concludes,1 but that communities and policy makers should dream together. www Sam Brakarsh is a senior from Zimbabwe. He is majoring in social psychology and is in the special program in global health. He can be contacted at firstname.lastname@example.org
The COVID-19 Pandemic isn’t the Only Outbreak We Need to Face
By Vanessa Blas
he first case of the novel coronavirus, or COVID-19, was reported in Wuhan, China in December 2019 and has spread to 185 countries in just three months.1,2 However, the virus is not the only outbreak that is spreading rapidly–the pandemic has become racialized, targeting millions of Asians and Asian Americans. COVID-19 is not the first instance in which a disease has been linked to one’s race or identity. At the beginning of the 1980s HIV/AIDS epidemic in the United States, many people believed only Haitians and people in the LGBTQ+ community could acquire AIDS, initially referred to as GRID, or gay-related immunodeficiency.3-5 In Washington State, some Americans refused to shake the hands of all Africans during the peak of the 2014 Ebola epidemic, although the outbreak was centered in West Africa, specifically Liberia, Sierra Leone, and Guinea.6 Furthermore, North America has a long and dark history of associating Asians and Asian Americans with disease. In 1900, the San Francisco Board of Health decided to quarantine and prevent Asian residents from leaving the Chinatown neighborhood in fear that they would spread a plague due to their “exotic” and “dirty” eating and
Wikimedia Commons hygienic practices.7 In 2003, Asians became the scapegoats of the SARS virus, which caused Asian-owned businesses in Toronto to lose about 80% of their income.5,8 With the rise of the coronavirus, this racism has resurfaced and infected the households and businesses of Asians across the globe. The media and government are to blame for this grievous repeat of history. When the first case of COVID-19 was confirmed in Manhattan, The New York Post perpetuated the racist “Asians-cause-disease” stereotype by using a picture of an Asian man wearing a mask to catch the attention of the public.9 President Trump has begun calling the coronavirus the “Chinese virus” instead of its scientific name, COVID-19.10,11 The White House has supported him using this term, which he claims is not racist, despite the World Health Organization’s (WHO’s) assertion that the virus should be referred to as COVID-19 since it has no nationality.12–14 WHO has emphasized that the virus is not bound to one group or identity,14 asserting that calling COVID-19 the “Chinese virus” is incorrect and xenophobic, and President Trump’s use of the label condones Anti-Chinese sentiment in America. Popular
With the rise of coronavirus, anti-Asian racism has resurfaced and infected the households and businesses of Asians across the globe. And the media and government are to blame.
newspapers and media outlets should immediately rebuke the President’s language to mitigate the damage he has caused. An article from The New York Times simply reported Trump’s defense of the label instead of focusing on how the action is highly xenophobic. The negative effects of his actions have already appeared. Shortly after President Trump began calling COVID-19 the “Chinese virus,” CBS News correspondent and Chinese American Weijia Jiang tweeted that while conversing with a White House official, they had referred to the virus as the “KungFlu.”13 In a recent interview, Texas senator John Cornyn claimed that Chinese culture and dietary habits are the source of the coronavirus and similar diseases.16 Fox News TV anchor Tucker Carlson only refers to the virus as the “Chinese Virus,” and the U.S. Secretary of State Mike Pompeo used the term “Wuhan virus” when describing the pandemic.13 This prejudice is present not only at the government and media level but in numerous communities across the country. Cities and towns with large East Asian communities face the biggest blow. In New York City, an Asian woman wearing a face mask–which is a common and healthy norm many East Asians practice during the annual flu season–was assaulted by a man, who called her a “diseased b****.”17 A Los Angeles man in the subway yelled at a Thai American passenger for being a “filthy Chinese,” and claimed that Chinese people cause all diseases.17 Two hotels in Indiana refused to accept two Asian citizens as guests because
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they feared they would carry and spread the virus.17 High schoolers have made racist comments to their Asian-American peers, such as claiming that all Asians are disgusting.18 Aside from the verbal assaults, this Anti-Chinese sentiment, coupled with the fear of acquiring COVID-19, has hurt the Asian and Asian-American community in quieter, but just as devastating ways. Similar to what happened during the 2003 SARS outbreak Chinese businesses and restaurants have struggled during the COVID-19 pandemic.8, 17, 19 Chinese restaurants that usually seat more than 100 customers a day, like David Zheng’s New Shanghai Deluxe Restaurant in New York’s Chinatown, now serve around twenty to thirty customers on their busiest days.17 Most of the employees in these Chinese restaurants have not even traveled to Wuhan, China during the outbreak, but customers continue to cancel their reservations or refuse to order food in fear that they can be exposed to the virus.17 Asian business owners in Boston, San Francisco, and London recently reported sharp sales declines since the start of the outbreak, and some have even sent messages to their customers to clarify that they should continue to shop at their store or restaurants, as they are following CDC hygiene protocols.18-19
A pandemic is not an excuse for racism.
Wikimedia Commons Trump holding a news conference on COVID-19, which he calls the “Chinese Virus.”
One can note that this decline in consumerism can be attributed to the lock-downs many cities have recently enforced and thereby preventing citizens from outside-dining or shopping, but there still seems to be an intentional avoidance of ordering take-out Chinese food.2,19 Meanwhile, there have been zero reports on active avoidance of Italian restaurants or stores despite the fact that Italy is now considered one of the epicenters of the pandemic.2 Although public health experts say it is irrational to abstain from Chinese restaurants in order to avoid the virus, Americans continue to do this very action, hurting Asian families who rely on their businesses
Flickr Pe King China restaurant is one of many restaurants forced to shut down dining services following the Los Angeles county COVID-19 lock-down. Consider ordering Chinese take-out to support Chinese businesses, which is still allowed!
and restaurants for income. Not only do Asian families have the general anxiety about staying healthy during a pandemic, but they must now deal with the harmful effects of being a scapegoat for the virus while worrying about how they can financially support themselves. The COVID-19 pandemic has highlighted the frailties of the health care system and the government’s preparation for a viral outbreak, but it has also shown how prominent racism still is in the country. The government has failed in protecting East Asians from this blatant racism, but change can start at a smaller level. A pandemic is not an excuse for racism. Rather than being a complacent bystander, allies should help defend those who are the target of racism and report any actions of hate towards Asians and Asian Americans. An ally does not even have to be as loud as the perpetrator– standing next to the victim and showing that one is there to help is a sign of comfort and solidarity that may speak louder than words. Supporting a local Asian business or restaurant by ordering take-out food or purchasing gift cards, correcting any misinformation about COVID-19, and refraining from calling COVID-19 the “Chinese Virus” are also possible ways to reduce the harm that has been done by the media and several government officials. These small acts of kindness and human decency go a long way and are sorely needed during these difficult times. www Vanessa Blas is a sophomore in Timothy Dwight majoring in anthropology. She can be contacted at email@example.com
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YALE GLOBAL HEALTH REVIEW
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19. World Health Organization Regional Office for Africa. (2019, October 22). Ebola Virus Disease Democratic Republic of the Congo External Situation Report 64. Retrieved from https://www.who.int/ emergencies/diseases/ebola/drc-2019/situation-reports 20. Medecins Sans Frontieres (MSF). (2019). Ebola response failing to gain the upper hand on the epidemic. Retrieved from https://www.msf. org/ebola-response-failing-gain-upper-hand-epidemic-democraticrepublic-congo 21. McNeil, D., (2019). W.H.O. Continues Emergency Status for Ebola Outbreak in Congo. New York Times. Retrieved from https://www. nytimes.com/2019/10/18/health/ebola-congo-who.html 22. Branswell, H. (2019, March 15). CDC’s Redfield: It could take another year to control Ebola in DRC. Statnews. Retrieved from https://www. statnews.com/2019/03/15/redfield-projection-ebola-drc/ 23. Leung, H. (2019, March 25). Ebola Cases in Democratic Republic of Congo Have Surpassed 1,000. Time. Retrieved from http://time. com/5557892/ebola-congo-drc-1000-cases/ 24. World Health Organization Regional Office for Africa. (2019, April 2). Ebola Virus Disease Democratic Republic of the Congo External Situation Report 35. Retrieved from https://apps.who.int/iris/bitstream/ handle/10665/311641/SITREP_EVD_DRC_20190331-eng.pdf?ua=1 E.E.E. Outbreaks - Vanessa Blas 1. Centers for Disease Control and Prevention. (n.d.). Eastern Equine Encephalitis. Retrieved from https://www.cdc.gov/ easternequineencephalitis/index.html 2. The Office of Governor Ned Lamont. (n.d.). Governor Lamont Advises Connecticut Residents to Take Proper Precautions Against Eastern Equine Encephalitis (EEE). CT.gov. Retrieved from https://portal.ct.gov/Office-ofthe-Governor/News/Press-Releases/2019/09-2019/Governor-LamontAdvises-Connecticut-Residents-to-Take-Proper-Precautions-Against-EEE 3. Centers for Disease Control and Prevention. (n.d.). Technical Fact Sheet: Eastern Equine Encephalitis. Retrieved from https://www.cdc.gov/ easternequineencephalitis/tech/factsheet.html 4. Michigan Emerging Disease Issues. (n.d.). Eastern Equine Encephalitis. Retrieved from https://www.michigan.gov/ emergingdiseases/0,4579,7-186-76711_77442---,00.html 5. Michigan Department of Health & Human Services. (n.d.). MDHHS reports four new cases of mosquito-borne disease and two additional deaths in Southwest Michigan. Retrieved from https://www.michigan. gov/mdhhs/0,5885,7-339--507956--,00.html 6. Yannone, T. (2019, October 18). How the EEE Virus Is Affecting Trickor-Treaters This Year. Boston Magazine. Retrieved from https://www. bostonmagazine.com/health/2019/10/18/eee-trick-or-treaters-boston/ 7. State of Connecticut Mosquito Management Program. (n.d.). Mosquitoes: FAQs. CT.gov. Retrieved from https://portal.ct.gov/Mosquito/FAQs/ Mosquitoes---FAQs 8. Climate Change Service. (n.d.). Surface air temperature for September 2019. Retrieved from https://climate.copernicus.eu/surface-airtemperature-september-2019 9. Ludwig, A., Zheng, H., Vrbova, L., Drebot, M., Iranpour, M., & Lindsay, L. (2019). Increased risk of endemic mosquito-borne diseases in Canada due to climate change. Canada Communicable Disease Report (CCDR), 45(4), 91-7. doi:10.14745/ccdr.v45i04a03 10. Armstrong, P. M., & Andreadis, T. G. (2013). Eastern equine encephalitis virus--old enemy, new threat. The New England Journal of Medicine, 368(18), 1670-3. doi:10.1056/NEJMp1213696 11. United States Environmental Protection Agency. (2018, May 31). Climate Impacts in the Northeast. Retrieved from https:// archive.epa.gov/epa/climate-impacts/climate-impacts-northeast. html#Precipitation and sea level 12. Letson, G. W., Pearson, J., Bailey, R. E., & Tsai, T. F. (1993). Eastern Equine Encephalitis (EEE): A Description of the 1989 Outbreak, Recent Epidemiologic Trends, and the Association of Rainfall with EEE Occurrence. The American Journal of Tropical Medicine and Hygiene, 49(6), 677–85. doi: 10.4269/ajtmh.1993.49.677
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12. Harris, R. (2019, April 30). As Artificial Intelligence Moves Into Medicine, The Human Touch Could Be A Casualty. National Public Radio (NPR). Retrieved from https://www.npr.org/sections/healthshots/2019/04/30/718413798/as-artificial-intelligence-moves-intomedicine-the-human-touch-could-be-a-casual Who Lives and Who Dies - Debbie Dada 1. Hammonds, E. (1986). Race, Sex, AIDS: The Construction of the “Other.” Radical America, 20(6), 28-38. 2. Villarosa, L. (2017, June 6). America’s Hidden H.I.V. Epidemic. The New York Times. Retrieved from https://www.nytimes.com/2017/06/06/ magazine/americas-hidden-hiv-epidemic.html 3. Joseph, S. (1986, December 22). Intravenous-Drug Abuse Is the Front Line in the War on AIDS. The New York Times. Retrieved from https:// www.nytimes.com/1986/12/22/opinion/l-intravenous-drug-abuse-isthe-front-line-in-the-war-on-aids-228886.html 4. Jonsen, A.R. (1993). The Social Impact of AIDS in the United States: Panel on Monitoring the Social Impact of the AIDS Epidemic. Washington, D.C.: National Acad. 5. Crimp, D. (1987). AIDS: Cultural Analysis/Cultural Activism. MIT Press, 43, 3-16. 6. Gavett, G. (2012) Timeline: 30 Years of AIDS in Black America. PBS. Retrieved from https://www.pbs.org/wgbh/frontline/article/timeline30-years-of-aids-in-black-america/ 7. Gow, J. (2002). The HIV/AIDS Epidemic In Africa: Implications For U.S. Policy. Health Affairs, 21(3), 57-69. doi:10.1377/hlthaff.21.3.57 8. Geary, A.M. (2014). Antiblack Racism and the AIDS Epidemic: State Intimacies. Basingstoke: Palgrave Macmillan. 9. The Rockefeller Foundation. (n.d.). Our History. Retrieved from https:// www.rockefellerfoundation.org/about-us/our-history/ 10. Ko, L. (2016, January). Unwanted Sterilization and Eugenics Programs in the United States. PBS. Retrieved from http://www.pbs.org/ independentlens/blog/unwanted-sterilization-and-eugenicsprograms-in-the-united-states/ 11. Roberts, D. (2012). Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century. New York: New Press. 12. Summers, M. (2010). “Suitable Care of the African When Afflicted With Insanity”: Race, Madness, and Social Order in Comparative Perspective. Bulletin of the History of Medicine, 84(1), 58-91. 13. Escobar, A. (1993). Encountering Development : The Making and Unmaking of the Third World. Princeton: Princeton University Press. Retrieved from ProQuest Ebook Central. 14. Magaziner, D. (2018, November). African Encounters With Colonialism. Lecture, New Haven, CT. 15. U.S. Congress. Committee on International Relations. (2003). United States Leadership against HIV/AIDS, Tuberculosis, and Malaria Act of 2003: Report (to Accompany H.R. 1298) (including Cost Estimates of the Congressional Budget Office). Cong. Rept. Washington, D.C.: U.S. G.P.O. 16. Fidler, D. (2004). Fighting the Axis of Illness: HIV/AIDS, Human Rights, and U.S. Foreign Policy. Harvard Human Rights Journal, 17. 17. Gottlieb, M.S. (1981). Pneumocystis Pneumonia --- Los Angeles. Centers for Disease Control and Prevention. Retrieved from https://www.cdc. gov/mmwr/preview/mmwrhtml/june_5.htm. 18. Hunter, T. W. (1998). To Joy My Freedom: Southern Black Womens Lives and Labors after the Civil War. New York. 19. Goodman, W. (1989, September 12). Review/Television; “Other Faces of AIDS,” a Frank Investigation. The New York Times. Retrieved from https://www.nytimes.com/1989/09/12/movies/review-televisionother-faces-of-aids-a-frank-investigation.html. Palliative Care - Shaan Bhandarkar 1. Stafford, N. (2011). Jack Kevorkian. BMJ: British Medical Journal, 343(7813), 43-43. Retrieved May 24, 2020, from www.jstor.org/stable/23048576 2. Charatan F. (2005). President Bush and Congress intervene in “right to die” case. BMJ (Clinical research ed.), 330(7493), 687. https://doi. org/10.1136/bmj.330.7493.687-a
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The COVID-19 Pandemic isn’t the Only Outbreak We Need to Face - Vanessa Blas 1. Zhu, N., et. al (2020). A Novel Coronavirus from Patients with Pneumonia in China, 2019. New England Journal of Medicine, 382(8), 727-733. Retrieved from https://doi.org/10.1056/NEJMoa2001017. doi:10.1056/NEJMoa2001017 2. Organization, W. H. (2020). Coronavirus disease (COVID-19) Pandemic. Retrieved from https://www.who.int/emergencies/diseases/novelcoronavirus-2019 3. Altman, L. K. (1981). Rare Cancer Seen in 41 Homosexuals. The New York Times. 4. Dubois, L. (1996). A spoonful of blood: Haitians, Racism and AIDS. Science as Culture, 6(1), 7-43. doi:10.1080/09505439609526454 5. Schram, J. (2003). How popular perceptions of risk from SARS are fermenting discrimination. BMJ : British Medical Journal, 326(7395), 939-939. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC1125856/. 6. Brown, D. L., & Constable, P. (2014). West Africans in Washington say they are being stigmatized because of Ebola fears. The Washington Post. Retrieved from https://www.washingtonpost.com/local/west-africansin-washington-say-they-are-being-stigmatized-because-of-ebolafear/2014/10/16/39442d18-54c6-11e4-892e-602188e70e9c_story.html 7. Kalisch, P. A. (1972). The Black Death in Chinatown: Plague and Politics in San Francisco 1900-1904. Arizona and the West, 14(2), 113-136. Retrieved from www.jstor.org/stable/40168068. 8. Fang, J. (2020). The 2003 SARS outbreak fueled anti-Asian racism. Coronavirus doesn’t have to. The Washington Post. Retrieved from https://www.washingtonpost.com/outlook/2020/02/04/2003-sarsoutbreak-fueled-anti-asian-racism-this-pandemic-doesnt-have/ 9. Campanile, C., & Hogan, B. (2020). First case of coronavirus confirmed in New York City. The New York Post. Retrieved from https:// nypost.com/2020/03/01/first-case-of-coronavirus-confirmed-inmanhattan/?utm_source=url_sitebuttons&utm_medium=site%20 buttons&utm_campaign=site%20buttons 10. House, T. W. (2020). Remarks by President Trump, Vice President Pence, and Members of the Coronavirus Task Force in Press Briefing [Press release] 11. Bedard, P. (2020). White House: ‘Call it what it is — the China Virus’. Washington Examiner. Retrieved from https://www. washingtonexaminer.com/washington-secrets/white-house-call-itwhat-it-is-the-china-virus. 12. WhiteHouse [WhiteHouse]. (2020). Spanish Flu. West Nile Virus. Zika. Ebola. All named for places. Before the media’s fake outrage, even CNN called it “Chinese Coronavirus.” Those trying to divide us must stop rooting for America to fail and give Americans real info they need to get through the crisis [Twitter]. 13. Mackey, R. (2020). Trump Shrugs Off Spike in Anti-Chinese Racism, Even in His White House. The Intercept. Retrieved from https:// theintercept.com/2020/03/17/trump-blames-china-virus-whitehouse-aide-makes-racist-joke-asian-reporter/ 14. Organization, W. H. (2020). Live from WHO Headquarters - COVID-19 daily press briefing 18MAR2020. 15. Rogers, K., Jakes, L., & Swanson, A. (2020). Trump Defends Using ‘Chinese Virus’ Label, Ignoring Growing Criticism. The New York Times. 16. Mystal, E. (2020). The Media Is Helping Spread Trump’s Coronavirus Racism. The Nation. Retrieved from https://www.thenation.com/ article/society/coronavirus-trump-racism/. 17. Yan, H., Chen, N., & Naresh, D. (2020). What’s spreading faster than coronavirus in the US? Racist assaults and ignorant attacks against Asians. CNN. 18. Oung, Katherine. (2020). Coronavirus Racism Infected My High School. The New York Times. 19. Carman, T., & Heil, E. (2020). Amid coronavirus fears, Chinese restaurants report a drop in business. The Washington Post. Retrieved from https:// www.washingtonpost.com/lifestyle/food/amid-coronavirus-fearschinese-restaurants-report-a-drop-in-business/2020/02/14/2c7d7efe4e8f-11ea-bf44-f5043eb3918a_story.html