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Volume 2 | Issue 1 | Fall 2007
VOLUME 2 | ISSUE 1 | FALL 2007 FEAR AND EMPOWERMENT
EDITOR-IN-CHIEF Kadia Petricca ASSOCIATE EDITORS-IN-CHIEF Manisha Pahwa Shane Wong MANAGING EDITORS Michelle Chakkalackal Justine Chen ASSOCIATE MANAGING EDITOR Stephen Chen ASSOCIATE EDITORS Mike Callaghan Lauren Classen Nira Datta
Lauren Chakkalackal Justin LaRose Joy Matthews COPY EDITORS Catherine Brown Ailsa Chau Stephanie Gan Sarah Koerner Stephen Parkinson PRODUCTION EDITORS Augustine Kwok Conrad Lochovsky PHOTO EDITOR Chantelle Carneiro ART DESIGN Jennet Webber SPONSORSHIP DIRECTORS Sabrina Morelli Faraz Siddiqui ASSOCIATE SPONSORSHIP DIRECTORS Gabriel Fung Vincent Lam Yaru Lin FINANCE DIRECTOR Christina Lam
Volume 1 | Issue 1 | Fall 2005 Health and Human Rights
PUBLICITY DIRECTOR Nicodemus Oey ASSOCIATE PUBLICITY DIRECTORS Jocelyn Armah Brian Park Jackie Wong EVENT COORDINATOR Adriana Petricca ADMINISTRATIVE DIRECTORS Neill Mears Stephanie Montesanti
CONTRIBUTORS Lauren Chakkalakal Justine Chen Nira Datta Deborah Frolick Jenna Hoyt Christopher Klinger Marnie Mitchell Alexandra Mihailovic Sarah Wiebe Shane Wong PHOTO CREDITS Sophia Balagamwala Mike Callaghan Colin Oâ€™Connor John Coy Pierre Holtz John Isaac Hedy Ip Anna Kari Anne-Fay Townsend COVER PHOTO Elizabeth Lavoie
Volume 1 | Issue 2 | Spring 2006 Poverty, Affluence and the Social Gradient
Volume 2 | Issue 1 | Fall 2007
TABLE OF CONTENTS NEWS AND NOTES
5 Global Health Tidbits
4 Letter From the Editor
by Justine Chen and Nira Datta A brief look at what is happening in our world in regards to global health, from birth control to biotechnology, from refugees to rehabilitating child soldiers.
An introduction to the magazine and our current issue from Editor-in-Chief of Juxtaposition.
10 Tšepong Clinic
20 Vision to Mission
by Marnie Mitchell When HIV-positive patients face fear and stigma when seeking anti-retroviral drugs (ARVs) in Lesotho, how can ARVs truly impact the community?
We explore the work of two extraordinary women, Dr. Alexandra Mihailovic and Ms. Jenna Hoyt, who have been actively involved in local capacity building, provision of medical care and advocacy within Africa.
12 Storm in a Western Pill
26 Anxious About the Gates
by Shane Wong When patients as young as two -years-old are prescribed psychostimulant drugs to treat attention deficient hyperactivtiy disorder (ADHD), controversy is bound to arise. How does ADHD medication empower diagnosed patients, and why do fears persist towards such drugs and the pharmaceutical industry?
by Sarah Wiebe A pressing global health issue facing Canadians at present occurs everyday at our borders involving discrepancies that exist in the immigration process.
Palliative Care in Sub-Saharan 29 Africa
15 The Art of Storytelling
by Christopher Klinger Across sub-Saharan Africa, it is estimated that millions could benefit from holistic and interdisciplinary hospice and palliative care services. However, in many developing countries, mobilizing resources and workers to care for the dying continues to be the largest political hurdle.
by Lauren Chakkalackal The Genographic Project aims to answer the very ancient philosophical questions of where we come from and how did we get here. But what happens if this knowledge actually harms one’s well-being and ability to act autonomously?
Conversations: Hope 32 Global in the 21 Century
by Deborah Frolick On November 3, six prominent humanitarians convened at Convocation Hall for the Random House symposium, ‘Hope in the Balance’. The speakers addressed many key themes including African stereotypes, volunteerism, donor fatigue and the brain drain.
What does fear and empowerment look like through the public lens? Of the many stunning photos submitted by readers, we chose the top five and featured them in our centrefold.
Volume 2 | Issue 1 | Fall 2007
LETTER FROM THE EDITOR Dear Readers,
To begin this exploration, Marnie Mitchel takes us to the Tšepong Clinic in Lesotho where she examines how stigma and discrimination have cultivated an environment of fear that encumbers patients from becoming active managers of their health. Shane Wong then brings us back to North America in Storm in a Western Pill, where he explores the growing market for Attention Deficit Hyperactivity Disorder (ADHD) medication as an empowering tool for individuals who struggle with the disorder’s social stigmas, and attention and impulse control deficits. Seeking to further uncover The Art of Story Telling in humanity’s genetic journey, Lauren Chakkalackal illuminates that while the Genographic Project may empower the general public through the generation of knowledge, it may in fact be simultaneously disempowering the indigenous and traditional peoples upon whose samples the study relies. As our Vision to Mission feature, Dr. Alexandra Mihailovic and Jenna Hoyt passionately detail their experiences of working in low income settings and how they are Becoming Part of a Global Health Movement. Through a political science lens, Sarah Wiebe, a graduate student from the University of Victoria, argues that Canadian immigration policy and health screening processes have translated into practical acts of discrimination towards new immigrants and leave newcomers Anxious at the Gates. Subsequently, Chris Klinger takes us back to Africa where he contends that amidst health service resource constraints, Palliative Care in Sub-Saharan Africa are vital programs that seek to empower and provide chronically and terminally ill patients with critical end of life care. Ending this issue, Deborah Frolick, reflects on the Hope in the 21st Century talk held at Convocation Hall on November 3rd, and suggests Global Conversation as the best strategy for approaching humanitarianism in years ahead.
Welcome back to another great year for global health at the University of Toronto! A year which will be filled with exciting opportunities for student engagement, a variety of upcoming global health events, and an even greater student resolve to make positive change. As a part of this global movement, it is with great pleasure that we bring to you the long anticipated 3rd issue of Juxtaposition Global Health Magazine focused on Fear and Empowerment. I am happy to say that in our journey towards sustainability, this issue serves as the first to be produced in its entirety by students and alumni without external support. I would like to extend my deepest thanks and appreciation to all of Juxtaposition’s past and current executive members and writers. It is truly amazing to have witnessed this simple idea - to create a forum for global health dialogue within UofT – become a major force for global health engagement both within UofT borders and beyond. This magazine would not have reached its present calibre without the level of team work and collaboration that has been witnessed. I am so pleased to welcome a fantastic team this 2007/2008 academic year which includes over 25 dedicated executive members and a readership which spans the globe. In light of Juxtaposition’s inaugural issue on Health and Human Rights and its second issue on Poverty, Affluence and the Social Gradient, we felt compelled to delve further into a common theme rampant within global health: that of Fear and Empowerment. In the context of this issue, empowerment refers to disadvantaged peoples working together to take control over the factors that determine their health and their lives. This process is both a personal and a group effort, which seeks to build a collective self-confidence to exert change in living, working, and health conditions. Hence, it is through an active struggle against the very issues that undermine one’s own life and health, such as gender discrimination, ethnic oppression, economic exploitation, political repression, and/or foreign intervention, that one may become self-confident and empowered to make the necessary changes to improve one’s well-being. Often this process requires marginalized peoples to take a stand against the structural issues that instigate fear and endanger their lives, which begs the question how can true empowerment be realized?
Now at the cusp of 2008, we must reflect, discuss and engage in addressing these inherent fears if we are to generate programs and policies that are truly empowering. I encourage you to become part of the global health movement on campus and beyond. Much like Juxtaposition, only when we work as a collective and unified team, can the outcomes of our endeavours be realized. We hope you enjoy the magazine and we look forward to hearing from you!
Kadia Petricca Editor-in-Chief 2006/2007 4
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Health TIDBITS Child Soldiers: Worthy to Rehabilitate?
UNICEF estimates that there are currently 300,000 child soldiers globally. In developing countries, most children are abducted or coerced into participating in government, paramilitary or rebel forces. International groups have advocated for rehabilitation of child soldiers, since children are often neglected once the conflict is over. Disarmament, demobilization, and reintegration (DDR) intervention programs attempt to bring security and stability to a region after a conflict and to ensure rehabilitation of ex-combatants. However, post-conflict re-integration of former child soldiers is a complex process since many are stigmatized by their own communities, and are themselves likely to resort to violence. The actual implementation of DDR programs lies in the hands of the afflicted country. This poses a challenge in cases where the government denies the use of child soldiers. For instance, in Bangladesh, the government armed forces neglected to implement any DDR programs, despite having recruited 3374 soldiers under the age of 18 in 1999.
Feeling Andropausal Lately? Strictly speaking men cannot experience menopause as women do, since menopause is defined as “the time at which a woman’s menstrual cycle ceases.” Nevertheless, it has been argued that men may perhaps experience a male equivalent to menopause termed andropause. Symptoms of andropause are similar to those of menopause, including but not limited to flushing, sweating, decreased sex drive, weariness and fatigue. While symptoms of menopause and andropause are similar in many aspects, their root causes differ. Unlike menopause which is triggered by a dramatic fall in the levels of female hormones, the levels of testosterone (the male hormone) decrease far more gradually over time. Furthermore, many doctors believe that the basis of andropause may be psychological rather than hormonal. These psychological triggers include, but are not limited to, the realization that men have left their (Pierre Holtz/UNICEF) youth behind and that such a realization is reinforced by the physical signs of aging.
Who Gets to Choose?
Female? On Welfare? Do you want some extra cash? Norplant is a form of birth control that is inserted surgically into a women’s arm and is designed to last up to five years. Since 1990, many eproductive rights activists and health care workers have embraced Norplant as a highly effective, long-lasting birth control method for women. Over 1 million women in the United States and over 3.6 million women worldwide were implanted with Norplant in 1996 alone. There have, however, been serious cases of abuse. Soon after its FDA approval in 1990, legislators in more than a dozen states had introduced measures that would have coerced women into using Norplant. For instance, in some states, financial incentives were extended to women on welfare on the condition that they agreed to take the contraceptive.
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How Well Do You Really Know Your Sexual Partner? Maybe less than you think. A recent study by researchers at the University of California has shown that an individual’s risk for contracting a sexually transmitted infection (STI) is directly associated with the individual having concurrent partners and with their partner’s sexual behavior. Among 96 couples recruited from Californian family planning clinics, 75% of the individuals were not aware that their partners were not monogamous. It is not surprising that these individuals, who lacked awareness of their partner’s monogamy, engaged in unprotected sexual intercourse with their non-monogamous, higher-risk partner. According to the study, the inability to ascertain ones partner’s sexual activity means that the ignorant individual engages in risky sexual behavior and has higher incidence rates of STIs.
When There Was Something Else in the Blood...
Between the 1940s and late 1990s, the blood system in Canada had largely been the responsibility of the Canadian Red Cross Society (CRCS). During the 1970s and 1980s, more than 1000 Canadians became infected with HIV through infected blood transfusions and approximately 28,600 others contracted Hepatitis C after receiving blood products. It became apparent that inadequately screened blood, often coming from high risk areas such as prisons, was entering the system. The CRCS delayed implementation of testing for non-A, non-B hepatitis until 1990, despite the fact that testing technology had been available since 1986. In response to the crisis, in 1993, Justice Horace Krever was appointed by the Canadian Government to head an inquiry on the Canadian blood system. Following the 1997 release of the Krever Report, the Canadian Blood Services Agency (CBSA) was created in 1998 to manage blood supply in Canada (except Quebec), replacing the Canadian Red Cross. Today, the CBSA employs a combined screening-testing process to ensure blood safety. Nucleic Acid and antibody tests are used to screen all blood and plasma units for the following infectious diseases: Syphilis, Hepatitus B and C, HIV 1 and 2, West Nile Virus, and Human T-Cell lymphotropic virus HTLV-I and II. Any blood or plasma tested positive for any of the aforementioned diseases is destroyed and the donor is notified of the test results.
It’s Every Man’s Business Men’s awareness about male cancers is low. With the exception of testicular and prostate cancer, this lack of awareness may be associated to the fact that male cancer research is severely under-funded. While the most common cancers occurring in men are testicular, prostate, and lung cancer, little-known cancers such as male breast cancer are beginning to have an impact on male mortality attributable to cancers. According to the American Cancer Society, a man’s lifetime risk of getting breast cancer is 1 in 1,000. While male breast cancer is rare, accounting for less than 1% of all breast cancers, survival rates require early diagnosis. As in female breast cancer, the survival rates of male breast cancer also depend on prognostic factors like tumor size and auxiliary nodal status. Unlike female breast cancer prognosis, the overall survival rates of men with breast cancer are lower, due to the fact that many patients of male breast cancer are diagnosed at late stages of the disease. Reasons for late diagnosis in part have to do with the male anatomy, the uncommonness of the disease, and social conception of masculinity with the absence of breasts. Possible symptoms of male breast cancer are skin dimpling or puckering, nipple retraction, redness or scaling of the nipple or breast skin, a lump or swelling, and discharge from the nipple. Types of treatment include, but are not limited to, surgery, hormone treatment, and chemotherapy.
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Power to the People? Farmers vs. Biotech Multinationals More than 830 million people in the world suffer from chronic malnutrition and 30 to 60 million suffer from severe hunger. Despite the threat of massive humanitarian crises, aid recipient countries have refused donations of Genetically Modified (GM) maize as food aid, fearing that introduction of GM crops would not only negatively affect human health, but also threaten the local knowledge and sustainable agricultural system, therefore disrupting the very basis of food security. Multinational ownership of seed and food production is a large threat to food security since very few farmers in developing countries can actually afford the new technologies and must depend on others for new technological innovations. In the US, Monsanto, an agricultural company, monopolizes 88% of the GM seed market, and is among the five multinational corporations worldwide which controls the biotechnology industry. Most of the crops being developed and marketed by biotechnology firms have little to do with enhancing food security for the poor in developing countries. Rather, these crops are developed for large-scale commercial agriculture in the industrialized world.
Shopping for Healthcare Medical tourism is understood as “patients going to a different country for either urgent or elective medical procedures.” Patients travel for treatment for a variety of reasons. In the case of Canada, patients who have opted for overseas treatment—ranging from facelifts to hip replacements—are often those who are frustrated with long waiting times. American medical tourists conversely seek treatments at a fraction of the cost, such as dental implants. Although many medical tourists are from industrialized countries, patients coming from poor countries such as Bangladesh, where treatments may not be available, have been increasing. Traditionally, popular destinations of medical tourism have included Argentina, Bolivia, Colombia, Costa Rica, Cuba, Hong Kong, Hungary, India, Israel, Jordan, Lithuania, Malaysia, New Zealand, Singapore, Turkey, Thailand, Philippines, South Africa, and Ukraine. Recently, inspired by the “successful model of medical tourism promoted by Singapore”, Taiwan has started promoting the strength of its medical service to attract international visitors.
Genetically Modified Crops and Foods: Worldwide Regulation, Prohibition, and Production. (www.centerforfoodsafety.org)
Microcredit: Does It Discriminate Against Those Who Are Not Empowered? Micro-financing programs have been revered as instruments for poverty reduction. A study by the World Bank’s Poverty Reduction and Economic Management Network showed that micro-credit programs are effective in alleviating poverty, specifically among the poor who seek self employment. However, what is disconcerting is the eligibility criteria for impoverished individuals to qualify for microfinance. Presently, only people with the necessary business skills and the ability to be self-employed are seen to benefit from micro-credit programs. These criteria can be used to discriminate against people who have not had the opportunity to be self-employed or employed. In developing countries, where unemployment rates are high and literacy rates are low, how can interested potential microfinance clients gain valuable skills to be deemed as employable? These factors coupled with corruption may form a potent discriminatory force further oppressing marginalized peoples. In Bangladesh, only 40% of eligible poor households participate in micro-credit programs. Simultaneous efforts which promote both literacy and skill-based training are essential to help those lacking the skills to take advantage of micro credit themselves.
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The Female Condom: Does It Really Empower Women? Female condoms are the only effective female-controlled preventative tool against sexually transmitted infections (STIs) and HIV/AIDS. Among the 39 million people presently infected with HIV, about half of them are women – an alarming increase from one third in 1985. Research has shown that the female condom is just as effective as the male condom in dual protection against pregnancy and STIs. Although female condoms have been introduced in many countries, there is still very limited accessibility in countries where HIV/AIDS is most prevalent. In 2005, only 14 million female condoms were made available for distribution worldwide; in contrast, over 6 billion male condoms were distributed. Poor female condom distribution is but one factor in poor condom usage. A gender imbalance in decisionmaking is often a greater deciding factor for poor condom usage in heterosexual partnerships. Condom usage is commonly decided by men, whereby men may still request their female partner not to use condoms for reasons of intimacy and trust. Consequently, many women decide not to use condoms for fear of violence, accusations of infidelity or HIV infection, and the fear it may break up their relationship. While, the female condom offers protection against HIV and other STIs, in practice, it may not offer a realistic option for many women.
Condom Use: Enemy Against the State? According to the Malawi Aids Program, approximately 10% of all adults in Malawi are HIV positive. Despite the fact that more than 90% of the population is aware of the dangers associated with HIV and AIDS, behavioral changes have still not taken place and HIV continues to spread at an alarming rate. Through peer-education programs, awareness campaigns have attempted to promote condom use among truck-drivers, female bartenders and patients with sexually transmitted infections. Many Malawians say that the primary reasons for not using condoms are excessive alcohol consumption, general ignorance of the dangers of HIV/AIDS and fear of appearing mistrustful to their partners. Although correct and consistent condom use has been reported as effective in the prevention of HIV transmission, a report released in 2006 by the University of Malawi College of Medicine indicates that “health interventions, such as condoms, are not perceived neutrally and actually maybe construed as the enemy of society.”
Female Condom (AVERT /www.avert.org)
The Right to Choose Your Work: Sex Work is REAL Work Despite the fact that selling sexual services between consenting adults is legal in Canada, the specific provisions set in place around prostitution make it difficult for sex workers to engage in prostitution without breaking the law. Under the current legal framework, sex workers live and work in conditions that are extremely violent and dangerous. Canada’s sex trade laws not only exacerbate the already harmful conditions under which sex workers live, but also worsen the unequal social and economic position of Canadian sex workers by invalidating sex work as “real” work. In New Zealand, the Prostitution Reform Act de-criminalized prostitution, which safeguards the human rights of sex workers by promoting their occupational health and safety.
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The Hopes of Tomorrow Should Not Die So Young Suicide is the single greatest cause of injury-related deaths amongst Aboriginals. Aboriginal youth suicide across Canada is occurring at an alarming rate and is considered an epidemic. In general, the Aboriginal youth suicide rate is 5 to 7 times higher than the national average and 11 times higher for Inuit youth. Specifically, according to a CBC report, the situation is “most dire in the Inuit population of Nunavik in Quebec’s Arctic region, where there are 11.3 youth suicides per 100,000 peoples.” Aboriginal youth suicide is a complex problem which not only affects youth, but also impacts the community, accounting for a ripple effect of suicide clusters. Like many Aboriginal health problems, the root causes of high suicide rates among Canadian Aboriginal youth go “much deeper to factors beyond an individual’s control.” Indeed, the Royal Commission on Aboriginal People reports that “profile of mental disorders among Aboriginal people is primarily a by-product of our colonial past with its layered assaults on Aboriginal cultures and personal identities.” For some Aboriginal youth, suicide is a means to escape the despair and poverty on the reserve, where there are few alternative choices available. While some of the barriers to change are in the Aboriginal communities themselves, non-Aboriginal control over programs and resources has resulted in little response to longterm prevention.
Aboriginal Health on the Policy Backburner A research project launched by the Institute for Research and Public Policy (IRPP) points out that there are significant disparities in well-being between Canada’s Aboriginal populations versus non-Aborigines. High youth suicide rate, substandard housing and sanitary conditions are but a few problems that plague many Aboriginal communities across the country. Many Aboriginal health problems have social, economic and historic roots. To address this discrepancy, the Royal Commission on Aboriginal Peoples saw self-government as a key to enable Aboriginal communities to mould their future. Yet, negotiations have been painfully slow, which has created structural barriers. For instance, although the rate of disabilities among Canada’s Aboriginal peoples is 32% and is twice the national average, conflicting jurisdictional issues have prevented many of them from accessing many of the services and benefits they are entitled.
A Heiltsuk girl holding one of the paddles of the “Glwa”, the Heiltsuk canoe, during the official opening of the Qatuwas Festival, an international gathering of maritime indigenous nations of the Pacific Rim. (John Isaac/UN Photo)
Displaced by War, Sick and Away from Home According to a BBC report, “the main health risks facing refugees are the result of a lack of simple human needs – clean water, food and shelter.” While the cramped conditions of a refugee camp often help to quickly spread epidemics of diseases such as cholera, measles, meningitis, tuberculosis and polio throughout the refugee population, other factors such as malnutrition, abuse and unemployment further contribute to the deterioration of the mental and physical health of refugees. The Second Gulf War for instance, produced more than 2 million displaced Iraqis, of whom many are survivors of violence and now have serious medical conditions that have been caused and further exacerbated by unemployment and economic woes.
Justine Chen received her Hon. B.A. from the University of Toronto in 2007. Her current research interests include the nexus between peace support operations and cross-cultural considerations, and China’s post-Mao transformation and its implications on changing state-society and international relations. Nira Datta graduated from the University of Toronto with an Hon. B.Sc. in Molecular Genetics and Molecular Biology in 2006. During her undergraduate career, Nira was keenly involved in yeast genomic and proteomic research. Upon her graduation, she worked as a science staff writer for the Varsity magazine. ‘Deep Inside the Proteome’, ‘An ATLAS for all matter’, and ‘Before the Bug Bites’, are a few of her published articles. Currently, Nira is pursuing her MSc in Science Communication at Imperial College London, and continuing to review manuscripts for the undergraduate peer-reviewed Journal of Young Investigators.
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Hope and Empowerment for People Living With HIV/AIDS in Lesotho By: Marnie Mitchell
“Courage is resistance to fear, mastery of fear, not absence of fear” -Mark Twain
Teaching HIV classes in Malawi (www.worldcampforkids.org)
The small mountain kingdom of Lesotho, land-locked within South Africa, has the world’s third highest incidence of HIV/AIDS. Approximately one in four adults is infected, with a 23% prevalence rate amongst adults aged 15–49.1 To address this growing epidemic, strong political leadership has been at the forefront of the fight against HIV/AIDS. This has been noted through the creation of public-private partnerships including such organizations as OHAfrica, an initiative spearheaded from the Ontario Hospital Association that supports the Tšepong HIV Clinic in Leribe. Since December 2004, OHAfrica’s Canadian health professionals have worked at the Tšepong (the Sesotho word for “hope”) HIV Clinic in Lesotho to provide antiretroviral therapy (ART) to the Basotho people in the district of Leribe. OHAfrica, funded by private foundations and supported by the Ontario Hospital Association, is one of many organizations working to improve ART access within Lesotho. Non-governmental organizations including Médecins Sans Frontières, Partners in Health, and the Clinton Foundation, as well as international donors such as the Global Fund to Fight AIDS, Tuberculosis and Malaria, plus bilateral government donors, are all important contributors. OHAfrica is unique in that the partnership with Lesotho spawned the first government supported ART centre, and through ongoing commitment, it has led to the largest ART centre in the country. From the outset, fear and stigma have plagued Tšepong Clinic pa-
tients, hindering them from receiving the full benefit of the newly available ART medications. The quandary is this - the treatment works best if it is started before people become very ill, and every dose must be taken on time to prevent the development of drug resistance. Yet, fear of testing prevents many patients from coming to the clinic until they are in the final stages of AIDS, and fear of disclosure results in patients hiding their tablets and thus not taking their treatment correctly. For the anti-retrovirals to truly impact the community, both the social and the medical aspect of HIV/AIDS must be addressed. Antiretroviral treatment: The ever-continuing test of true courage Without a doubt, living openly with HIV in Africa is a test of courage. In Lesotho, the focus of discrimination is not against those who get tested, but to those who test HIV positive. At Tšepong Clinic, both the Canadian and Basotho staff hear stories of discrimination daily; a daughter burns down the family house upon learning her mother is positive; a husband correlates testing with contracting the disease, and thereby blames his wife for getting tested and bringing the disease into their home; a mine worker suddenly gets laid off after accessing HIV treatment at the mine clinic. As if public rejection was not a large enough obstacle, individuals who are objects of this discrimination often internalize their abuse as shame. This shame, even more than the fear of public rejection, pre-
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vents people from disclosing their HIV-positive status. Edwin Cameron, a renowned HIV-positive South African judge and AIDS activist, described his own fear of disclosure: “[my] internal feelings of fear and disgust and self-blame were still too strong. I disentitled myself from the help I was entitled to receive”. At the Tšepong Clinic, workers regularly hear similar tales. One such case occurred when a young woman arrived at the clinic in the throes of a life-threatening respiratory illness. She started on anti-retroviral treatment a year prior, but stopped after three months due to fear of discovery by her family. Even with the knowledge that her death was imminent without treatment, she persisted in refusing to disclose her HIV-positive status. She feared her family’s derision and reprisals more than certain death from AIDS.
HIV-AIDS: Hope in the struggle to courage and empowerment Peer-educators have been a part of the program at Tšepong since OHAfrica was first established. Originally hired as translators, six dynamic HIV-positive women have become the backbone the clinics program, providing education and counselling to more than 6,000 patients. Villagers regularly seek them out for advice and support, even during their off-hours. Thanks to the support of PB, this program will expand across the district to work with both PLWHA in health centers as well as with the general population. Increasing community knowledge of the disease will dispel myths, misunderstandings, and fear, thereby empowering people to make informed decisions about how to improve their lives. However, there are many challenges that Obstacles to empowerment: Neither money nor peer-educators face. By speaking openly will, but bureaucracy and red-tape about their sero-status, peer-educators brave In contrast, empowerment enables resistance to insults and stigmatization not only from HIV fear and strength for courage. For the people living negative members of the community, but with HIV and AIDS (PLWHA) groups in Lesotho, emalso by those who are HIV positive as well. powerment means standing up in the face of adverA more shocking accusation that often arises sity to gain access to the vital services needed for is that these valiant peer-educators are liars. their survival. As outsiders, OHAfrica health profesDuring a health consultation, a recently diagsionals cannot empower PLWHA; only PLWHA must nosed HIV-positive man had recently sneered claim that power for themselves. The Tšepong Clinic to a peer-educator that “You don’t really have can, however, make the road to empowerment easHIV. You can’t have HIV, you are too healthy! ier to travel. You are just getting paid to talk about it.” Operating in tandem with the Tšepong is the PLWHA support group Nevertheless, amidst the struggles, the overall impact of programs Phelisanang Bophelong (PB), which means “Live Together in Life” when against stigma and discrimination has been positive. Recently, I obliterally translated. PB started with six men and women who were frus- served a peer-educator, Mapuseletso, teaching a group of PLWHA about trated with being isolated and stigmatized. They took action. By speaking HIV and its treatment. One patient in the group had run out of the daily openly about their HIV status in their own communities, the members antibiotic tablet which prevents further infections. She had been away of PB aimed to break through the barriers of stigma that silenced their from her home, visiting family in another part of Lesotho. She did not society. They were motivated to expand their group into a network of know that she could – and should – request care from any nearby health education and support that would serve the entire Leribe district. What centre. People were astonished when Mapuseletso suggested that the they lacked were the resources to put patient should take charge of her their ideas into action. own care. If she was running don’t really have HIV. You can’t However, there are considerable out of tablets, she should go to a sums of money for HIV-related activihealth centre and request more. have HIV, you are too healthy! You are ties in Lesotho if one can access it and Mapuseletso was introducing donors all pay testimony to “empow- just getting paid to talk about it.” the key idea that PLWHA do not ering PLWHA”. Unfortunately, applying have to be passive recipients of for a grant is an insurmountable task for most support groups. Lengthy treatment, but can be active managers of their own health. Slowly, forms and detailed budgets requiring computer skills and English fluency the group explored this idea together. Heads started to nod and faces prevent many community based groups like PB from accessing theoreti- started to light up as they grasped – and accepted – the idea that they cally available resources. too can take charge of their own well-being. It is hoped that this realizaTo address this need, OHAfrica has helped in securing funds so that tion will become a new force in mitigating the epidemic. PB could mobilize the people. With OHAfrica’s support, PB is now commencing a three year USAID-funded program. Now comprised of more Marnie Mitchel graduated from the University of Toronto with a Bachelor of Science in than 200 people, the group meets weekly to support and educate each Pharmacy in 1996 and from the University of Sydney with a Master of International Public other. One of the main objectives is to establish a peer-education and Health in 2005. She has worked in remote regions of Canada, and has international work support network reaching all corners of Leribe with the aim of breaking experience in Guyana, Zimbabwe and Lesotho. Her work has focused primarily on HIV, TB the stigma surrounding HIV. Peer-educators will be trained on essential and reproductive health. She worked in Lesotho for OHAfrica from 2005-2007, where she facts about HIV/AIDS including ways to live positively throughout their served as the program’s HIV Treatment Decentralisation Coordinator. She has published nustruggle and information on locally available vital ART. They will then merous journal columns and academic papers detailing her work overseas. She currently disseminate this message to the local community through outreach pro- works for the First Nations and Inuit Health Branch of Health Canada. grams. E-mail address: Please contact Juxtaposition magazine for autor’s e-mail address.
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Storm in a Western Pill Fear and Empowerment in ADHD Drug Treatment By Shane Wong
“Ritalin, Ritalin, seizure drugs, Ritalin.” Such is the lunchtime rhyme for a typical school nurse in the U.S. as she trots from class to class, dispensing pills into outstretched hands of young children (01/18/99 – New York Times).
Welcome to the uniquely North American psychotropic environment. A continent featuring a prescription drug market for attention deficit hyperactivity disorder (ADHD) worth over US$2 billion annually, and where the number of prescriptions have grown four-fold in 20 years and over 90% of prescriptions worldwide originate.1 But when patients as young as two-years-old are prescribed drugs that a government puts in the same category as morphine and cocaine,2 controversy concerning the use of drug treatment for ADHD is bound to arise. This article will explore how ADHD medication can empower diagnosed patients, and why fears towards such drugs and the pharmaceutical industry persist across North America.
ADHD Diagnosis Attention deficit hyperactivity disorder (ADHD) is among the most commonly diagnosed behavioural disorder in school-aged children, with prevalence rates ranging from 2% to 7%.3 According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), the standard diagnostic manual for all North American mental health professionals, ADHD is differentiated into two clusters of behavioural symptoms: inattention as well as hyperactivity and impulsivity.4 Problems with attention primarily involve a lack of sustained focus, which can manifest as a rapid shift between toys when young children play or a lack of persistence shown by older children during tasks that lack intrinsic appeal or immediate reward. Additionally, children may also have trouble controlling impulsive behaviour, such as speaking out irrationally or engaging in unnecessary risk-taking behaviour. Finally, hyperactivity includes a tendency to fidget excessively, making it often the most obvious featuren young children. Burden of Disease: In the Classroom These tendencies naturally contribute to problems in a variety of domains for many children classified as having ADHD. Academically, children with ADHD are more likely to be expelled or suspended. 25% of ADHD children develop learning disabilities that range from reading disorders to dyscalculia, a very specific math related disorder where individuals have trouble manipulating simple calculations and numbers.5 Consequently, it is no surprise that researchers found that ADHD is associated with lower rates of high school graduation and post-secondary education. Burden of Disease: Outside the Classroom Apparently the sing-song echo of children in the playground, “sticks and stones may break my bones, but words will never hurt me”, is only partly true. ADHD children not only have higher rates of accidents, but they have a lower sense of self-esteem and self-efficacy due to frequent negative feedback in academic and social settings.6,7 More troublingly,
one study found that 30% of ADHD youth also suffer from anxiety disorders, while 11% experience major depression. Due to their often unrestrained and overbearing social behaviour, ADHD children are also less popular among their peers. Using their classmates’ ratings, researchers found that only 1% of 7-9 year-old children with ADHD were of ‘popular’ status, while 52% fell into the ‘rejected’ category.8 A Childhood Syndrome? Contrary to popular belief, many of the symptoms of ADHD remain present throughout an individual’s lifetime. With growing attention shifting towards adults with ADHD, researchers have found that many negative outcomes associated with ADHD that are exacerbated in adulthood as individuals are gaining increasing responsibility and autonomy. Adults with ADHD generally face greater marital and drug abuse problems, and become involved in more serious accidents. For instance, a unique German study revealed that nearly 45% of inmates in a prison facility suffer from ADHD, suggesting an increased risk of run-ins with the law.9 Furthermore, at the workplace, ADHD adults display lower work ratings and often change jobs more frequently.10 Ritalin: An Empowerment Tool? Given the negative health, social and academic outcomes associated with ADHD, psychostimulant medications such as Ritalin and Adderall offer the potential to empower children and adults by reducing the risk of negative consequences. In a landmark study lasting over 18 years, researchers at the renowed Mayo Clinic found that ADHD medication was associated with improved long-term academic success in children with ADHD. Compared to untreated children diagnosed with ADHD, medication improved reading achievement scores, decreased absenteeism, and decreased the likelihood for a child to be retained in a grade.11 More specifically, children were able to handle general tasks and manage requests better, while increasing academic productivity. Outside the classroom, treatment with psychostimulants also reduced the risk of substance abuse by about half compared to children without treatment.12 The growing research into the benefits of psychostimulant treatment suggest that current ADHD medications can empower individuals to achieve success in academic, employment, self-care and social relationships. But, how does this ‘magic’ pill work? With advances of brain imaging technology, researchers have made tremendous progress in illuminating how medication ‘empowers’ at a neurochemical level. Contrary to one of the first coherent descriptions of ADHD in 1902,13 which attributed the disorder to an “abnormal defect in moral control,” current drug treatments have actually uncovered a characteristic difference in the brains of patients with ADHD, which stems from a lack of dopamine receptors in the attentional network. Therefore, ADHD psychostimulant treatments, like Ritalin, actually
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work by increasing dopamine in the brain by blocking re-uptake transporters, in a fashion analogous to a powerful brick that blocks a drainage pipe, preventing neurochemicals from being flushed away. According to our knowledge of dopamine, the enhancement of dopamine signals in the brain helps patients focus and learn.14 One theory that can explain the lowered risk of drug abuse, hypothesizes that an increased dopamine signal lengthens ‘the temporal window’ for associating behaviours to consequences, leading to more effective extinction of impulsive behaviours.15 Psychostimulants were also shown to increase dopamine in brain regions known as the attentional network, leading to a greater level of attention and focus. Based on these findings, psychostimulant treatments appear to empower patients by reducing symptoms at a neurochemical level and minimizing the risks of negative outcomes associated with ADHD. Long Term Effects of Psychostimulants: Dependency? Despite the demonstrated benefits of drug treatment, there remain uneasy fears towards the ADHD medication as a result of its potential side-effects. According to fundamental neurobiological principles, the brain will compensate for the artificial changes in brain chemistry caused by drugs. This suggestion was confirmed in a 2001 brain imaging study that found three months of psychostimulant treatment in ADHD children significantly reduced the number of dopamine receptors in the attentional network, the very deficit characterizing ADHD brains in the first place.16 In other words, if children are taken off the medication, it is likely that their ADHD symptoms will worsen, at least in the short-term. Currently, ADHD medication labelling warns for the risk of sudden death in children and adolescents with structural cardiac abnormalities or other serious heart problems, and psychotic symptoms such as hallucinations and delusions. For Every Action, There is a Reaction: Abuse and New Formulations of Medication There are also fears directed towards the potential abuse of psychostimulant medication. In 2001, the Journal of the American Medical Association published an article titled: “Pay Attention: Ritalin Acts Much like Cocaine”, confirming that the clinical effects of ADHD drugs are indistinguishable from cocaine if both are similarly administered. Furthermore, psychostimulants have been abused by students needing to stay awake and study, or hoping to lose weight.17 As quoted in the New York Magazine, “You swallow Adderall to study, and snort it for fun”.18 One survey examining the prevalence of ADHD drug abuse found that more than 16% of students at a liberal arts college had tried Ritalin recreationally and nearly 13% had ‘snorted’ it.19 According to a 2007 report from US Office of the National Drug Control Policy, prescription drugs are now second only to marijuana when it comes to drug abuse among the college age group.
However, the issue of psychostimulants drug abuse to achieve a ‘high’ has been circumvented by recent advances in drug formulation and delivery. By embedding the psychoactive ingredients within a thick paste, newer psychostimulants such as Concerta prevents drug abusers from snorting or injecting it intravenously to achieve a “high,” limiting the medicine’s street value. Furthermore, a once-a-day formulation administered in the morning before school is less likely to be given away or sold to other students. Pharmaceutical Industries Role in Prescribing Psychostimulants Among the scientific community and media, there is also a fear towards potential abuse and undue influence by the thriving pharmaceutical industry. Until 2004, it was the most profitable industry in the U.S.20 Given the rapid growth of the global market for ADHD drug treatment that has witnessed drug spending rise nine fold between 1993 and 2003, pharmaceutical corporations are undoubtedly major stakeholders in the debate over how to treat ADHD. With more money spent on ‘marketing and administration’ than ‘research and design,’ there is concern that the pharmaceutical industry can use its vast financial resources to promote medication as the ADHD treatment of choice to patients and physicians. According to Dr. Marcia Angell, pharmaceutical companies already have “too much” influence over the education of physicians. It has been estimated that the pharmaceutical industry spends over $6 billion annually on marketing to physicians.21 Sales representatives hired to visit physicians is a common avenue to market the latest drug product. One physician recalls being “offered $100 [to simply] sit and listen for 15 minutes on the telephone” to a pharmaceutical representative talk about ADHD and Adderrall.22 More troublingly, Dr. Harold Koplewicz of New York University believes sales representatives can influence “prescription practice more than reading a peer-reviewed journal”. There is also a growing new industry called Medical Education and Communication Companies (MECC), forprofit companies now numbering more than 100 that are supported by pharmaceutical companies and put together educational programs, presentations and teaching materials for physicians.23 While representatives of the pharmaceutical companies say their intention is simply to generate goodwill by financially assisting providers of Continuing Medical Education with the costs of the educational programs, studies have found industry-supported educational activities are slanted in favour of the financial supporter’s products, and that physicians attending such courses later prescribe these products more often than competing drugs.24 Pharmaceutical Industries’ Influence on Research Pharmaceuticals also exert influence over research activities through funding.25 In the United States, 70% of the $5.56 billion that goes into funding for clinical research comes from the biopharmaceutical industry.26 According to a recent survey of 107 U.S. medical schools,
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a startling 62% of industry-funded research permits the sponsor to alter the study design after an agreement has been executed while 80% allow the sponsor to own the data. One telling example of the consequences of this conflict of interest, between scientific research and the pharmaceutical industry’s interests, is told by Dr. William Pelham, a leading ADHD research author to over 275 publications. In 1997, Dr. Pelham was funded by the McNeil Pharmaceuticals to conduct a study to gain FDA approval for the ADHD medication Concerta. The original intent was to measure both the side effects and main effects of the drug, but the study was fundamentally flawed because the participants were screened to ensure they were already taking and responding well to a similar ADHD medication.27 By stacking the studies with patients already successfully taking stimulants, McNeil Pharmaceuticals ensured the participants would be unlikely to register side-effects. Furthermore, Dr. Pelham claims that there was direct pressure from the company to tweak the findings in the paper. Recalling a conference call with senior executives of the pharmaceutical company funding the study, he was “pushed to delete a paragraph in the article” advocating combined treatment (medication and behavioural), and pressured to water down or eliminate other phrases that did not dovetail into their interests. In the end, the paper was accepted without his knowledge and published with his name on it. Today, Concerta is on the market, but Dr. Pelham argues that it reflects how companies are “really pushing meds without telling the full picture”. As Dr. Angell, former editor-in-chief of the New England Journal of Medicine, asserts, pharmaceutical industry’s control over the evaluation of their own product constitutes a fundamental conflict of interest. The growing partnership between the pharmaceutical industry and scientists may potentially compromise that of intellectual honesty in clinical research. Marketing of Quick Fixes The pharmaceutical industry in North American has also begun to directly market ADHD drug treatments to families. In 1996, the United Nations International Narcotics Control Board ANNUAL REPORT 1995 publicly raised concerns regarding the active promotion of psychostimulant treatment by the parent support group Children and Adults with Attention Deficit/Hyperactivity Disorder, who had received a donation of more than $1 million from the American pharmaceutical industry.28 Further in 2001, the American ADHD pharmaceutical industry began launching direct-to-consumer advertisements in magazines and on television promoting ADHD drug treatments.29 This ended nearly 30 years of the global industry’s observance of the 1971 Convention on Psychotropic Substances, an international treaty discouraging consumer advertising of controlled substances. While advertisements can inform parents of treatment options and raise awareness about the disorder, marketing tends to drive up parental demands for specific drugs regardless of whether they are the best treatment option for a particular child afflicted with the disorder.30 A study in 1999 showed that 80 percent of patients who asked for an advertised drug were prescribed it.31 Moreover, advertising may create the impression that medication is an “easy quick fix” for the often confusing and frustrating behaviour of ADHD children. With a for-profit pharmaceutical industry thriving in a capitalist economy, the central concern is that industry-funded research, education and marketing may push physicians, researchers and families towards only one way of thinking about the problem; that the only solution to ADHD lies in a daily pill for lifetime, coincidentally a highly profitable solution.
Broader Range of Empowerment Tools In a 2000 review of the use of stimulants for ADHD children, the American Medical Association asserted that “medication . . . should never be regarded as the whole treatment.” Apart from a fear for potential side-effects, the problem is that stimulant drugs can only provide shortterm management of behaviour as they do not confer benefits once the drug has been withdrawn.32 Use of drugs over an entire lifetime in order to manage behavioral symptoms is not, however, an attractive option to those lacking medical insurance and the financial resources to purchase daily medication for their child. Among the plethora of non-medication treatments that includes herbal medicines to dietary modifications, one of the most promising treatments is neurofeedback. Underlying this treatment is the finding that electroencephalogram (EEG) patterns, brain electrical activity as measured by electrodes on the scalp, are different in those with ADHD. More specifically, all children with ADHD show increased theta (4–8 Hz) compared to beta (16–20 or 13–21 Hz) relative to healthy age peers.33 Using an EEG net, brain electrical activity can be converted into visual or acoustic signals that are continuously fed back in real time. Since finding that conditioning brain activity patterns is possible, changes that are made in the desired direction are rewarded. For children, such training is often framed as a type of computer game. In essence, neurofeedback is an operant conditioning procedure in which patients learn to gain self-control over their own brain activity to produce EEG activity associated with being calm, alert while minimizing activity associated with ADHD symptoms. Self-regulation through neurofeedback, which simply involves the client learning to produce brain wave patterns that are associated with being calm and focused, has advantages over medication. Neurofeedback offers a non-medicinal alternative for the management of ADHD symptoms and produces long-lasting effects 10 years later in children who successfully changed brain wave patterns.34 It is also non-invasive and without negative side-effects, thus making it a much more benign intervention. More importantly, several research studies have concluded that that neurofeedback is an efficacious treatment for ADHD with symptom reduction equivalent to what can be achieved with Ritalin.35 However, the treatment is not without its drawbacks. The typical treatment requires a time commitment of about 40 sessions that last about an hour-long each. Neurofeedback also requires the child to be motivated to complete the full treatment, although increasing attention to designing fun computer games in this context may be helpful. Ultimately, for those who suffer from constant setbacks and failures due to inattention, hyperactivity or impulsivity, drug treatment can be a very empowering tool. ADHD drug treatment can act as a powerful stimulant for learning which is often important for success in school, at the workplace, or interpersonally within a social environment. However, it is critical to remain mindful of the financial pressures exerted by the pharmaceutical industry on physicians, research and families. With recent research suggesting alternative treatments such as the effectiveness of neurofeedback, a multi-modal treatment that incorporates medication and neurofeedback may be the most effective long-term strategy to manage or even treat ADHD. Shane Wong will be graduating with a HBSc in Human Behavioural Biology and Psychology from the University of Toronto in 2008. He hopes to pursue a career in paediatric psychiatry and continue working with children diagnosed with ADHD and autism spectrum disorders. He is also interested in working abroad and exploring how socio-cultural influences shape our conception of mental health.
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The Art of Storytelling
A Tale of the fabled DNA Gatherers and their Assumptions and Omissions
By Lauren Chakkalackal
“There is no more fascinating subject in which a person may become occupied than an examination into the history of his ancestry.” - Archibald F. Bennett
The Genographic Project (GP) is the National Geographic’s latest effort to map humanity’s genetic journey.1 Its purpose is to answer the very ancient philosophical questions of where do we come from and how did we get here today? At the very least, knowledge of such answers would serve as a newsworthy morsel in one’s next cocktail conversation. And why not? After all, knowing such information is not harmful to us, and may perhaps benefit our health related decisions. Conventional social wisdom dictates that the more knowledge we have about ourselves, in that, the more we are self-aware, the greater level of power or empowerment we will have to make choices that can benefit our health and well-being. Hence, answers to genetically based questions of where we came from and how we got here can in fact, enrich our personal identity, broaden our cultural beliefs and ultimately, secure our autonomy. However, what happens if the alternative is true? What happens when greater self-knowledge actually harms your well-being and ability to act autonomously? This unfortunately, may be the case with indigenous and traditional peoples participating in the GP. Comparatively, such information may be disempowering indigenous people from their identity, engrained cultural beliefs and consequently, be restraining to their autonomy. Further exacerbating the disempowerment of indigenous populations is the lack of a framework or protection model provided by the GP that would address how the results to these two seemingly innocuous questions would not pose detrimental effects to the indigenous people participating in their study. The question then becomes, “Who benefits from this self awareness and knowledge”? Where do we come from and how did we get here? In April 2005, the Genographic Project (GP) began its ambitious collection of genetic samples from the general public, indigenous communities, and traditional peoples to map our genetic and migration history. By using hereditary genetic markers from participants that are linked to specific geographical locations and ethnic groups, the GP will be reconstructing humanity’s ancient migration patterns.2 Its ultimate goal is to collect 100,000 DNA samples from indigenous and traditional peoples and to analyze these samples for specific “markers of descent”,3 making the GP the worlds largest anthropogenic study to date.4 The study has three components: public participation and awareness, field research, and the Genographic Legacy Fund (GLF).
Legacy Fund. Once purchased, individuals are asked to send in a cheek swab sample. Along with this sample, participants are asked to choose between finding out about their maternal or paternal lineage. Maternal genetic lineage can be determined through mitochondrial DNA (mtDNA) analysis, since genetic variations in mtDNA are inherited by both male and female offspring from the mother. Since the Y chromosome is only passed from father to son, only interested male participants may have access to paternal lineage genetic history. Paternal lineage is determined through Y chromosome DNA (yDNA) analysis.6 Once these cheek swabs are analyzed, results are sent back to the participants so they can learn about their migratory history and follow the overall progress of the project.7 To answer where we came from and how we got here today, researchers examine specific regions within mtDNA and yDNA to locate infrequent mutations. These infrequent mutations serve as genetic signposts for tracing human evolution and migration patterns, whose frequencies within certain populations are then mapped to their geographic distributions to illustrate migration pathways.6,7 The general public benefits from these findings directly by being able to trace their migratory patterns through history, and if they chose to contribute their genetic information, they can benefit by sharing their information to tell the story of us all.5 If I was to participate, I would receive an anthropological story of ancestors, which reveals a single line of direct descent.5 What differentiates the GP from other DNA studies on the market is that it is not a genealogy study like Ancestry.com8 that is intended to help you identify lost family branches. Nor is it an ethnicity study like DNA Print Genomics from which you would receive a percentage breakdown of your ethnicity, race, or geographic origin.9 Rather, it is a study to find out where individuals fit in the human family tree.5 To find out where we fit on the human family tree, the DNA data being collected is focused specifically on genetic markers associated with particular human lineages known as haplogroups.10 By finding out what my haplogroup is, I would have a rough estimate of where and when my ancestor’s journey began. In principle, all non-Africans share a common mutation that occurred in their ancestors during the first wave of migration out of Africa.11 Since the results are intended to capture the roots of my deep ancestry and not present day migration patterns, the results sent to me would indicate my ancestors’ early movements. If I am of African descent, it will not include the most recent migrations within the past 10,000 years.12
Public Participation and Awareness Campaign: The “Me” Connection The general public can participate in the study by purchasing a Genographic Participation Kit for US$95.00 from the online National Geographic Store5 that funds the field research to collect samples from indigenous and traditional peoples and also supports the Genographic
Field Research: Why focus on indigenous and traditional peoples? While anyone can contribute their genetic information, the GP is most interested in stable ‘key populations’ where people have lived within a particular geographic region and preserved their culture.13 As a result, the GP focus on the bulk of sample collections coming from indigenous
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and traditional peoples. In comparison to the general public, indigenous and traditional peoples are considered to be more stable populations because their cultural practices including inter-marriage and/or geographic isolation result in less genetic mixing with other populations. In terms of genetic mapping, the less genetic mixing means that a greater percentage of genetic history remains unaltered. Consequently, DNA from the indigenous and traditional peoples can serve as more reliable indicators of ancient migratory patterns than the general population.11 Furthermore, since these populations have long standing cultural practices, scientists can also look at how culture may impact genetic variation. Less clear is the distinction between indigenous and traditional peoples. The GP refers to a framework provided by Jose R. Martinez Cobo, the Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of Minorities, who presented a working definition for indigenous peoples as “Indigenous communities, peoples, and nations are those which, having a historical continuity with pre-
A Screenshot from the Genographic Project, from the National Geographic website.
invasion and pre-colonial societies that developed on their territories consider themselves distinct from other sectors of the societies now prevailing on those territories, or parts of them”.12 Indigenous peoples at present often form non-dominant sectors of society. While the GP stresses that indigenous groups refer to themselves as indigenous, in comparison, traditional peoples do not. Traditional peoples may form a dominant sector of society, but are still considered stable because of their less genetic mixing. For the purposes of their study, the GP considers examples of traditional peoples to include Basques, Greeks, Icelanders, Malays, and Mongolians.13 Who benefits and is empowered from this self awareness? General public self-awareness For me or other general public participants, the answers to who I am and where I came from may serve as a reinforcement that underpins our own general desire to belong and find our place in humankind. Hence, once again, these answers would enrich our concept of identity and increase our self-awareness. Through extensive research, findings from the GP test corroborate the proverbial message that race is only skin deep, since genetic mapping has consistently traced us back to our African ancestors.14
On an individual health level, this new piece of information may change the way I perceive my health risks. In the field of human genetics and anthropology, recent research findings indicate that certain diseases occur at higher frequencies within particular ethnicities that can be attributed to inheritance and can have profound impacts on treatment options.15 For instance, if I was recently diagnosed with high blood pressure, instead of the standard treatment for hypertension, I may choose BiDil, a heart medication specially formulated for Africans to address my increased genetic risk for cardiovascular disease and side effects to standard medication.16,17 Consequently, one can consider this self-awareness or knowledge as power - the power to choose alternatives that are better suited to one’s needs and well being, otherwise known as empowerment. Therefore, in theory the greater one knows about oneself, the more likely one is to benefit from this knowledge. However, such knowledge may also lead to unanticipated impacts on social constructs and identities that may in fact alter one’s identity. For instance, to supplement the knowledge gathered from the GP and further ascertain our ethic background, we may also choose to undergo a test with DNA Print Genomics,9 another genetic test on the recreational genomics market.15 Results from this test could uncover that one is 80% West African and 20% Asian.15 Would this knowledge change how you perceive yourself in society? Could this information be misused? If we lived in the United States, we may be able to access resources that serve minority groups more readily, and use this information to our advantage in race-based University admissions. Indigenous People and Genographic Legacy Fund While it is clear how individuals in the general public may benefit from increased knowledge of their ancestral past and how we are genetically related, it is less clear how such information will benefit indigenous and traditional peoples. In fact, after appraising this situation of unequal benefits, one wonders if the GP is underselling the risks associated with participating in their study.18 This genetic ancestry information could jeopardize land rights and other benefits that are based on the notion that these tribes have lived in a place since the beginning of time. It could challenge a group’s moral basis for sovereignty and undermine other collective legal claims such as access to medical care, if, for instance, a tribes’ genetic story tells another account. At first, these far-reaching consequences may seem implausible, if not absurd, but history tells us otherwise.
History Unearthed Cultural Clashes between Indigenous and Scientific Narratives The Havasupai tribe, an American Indian tribe, was raised to believe that humanity’s birth place is the Grand Canynon. Tribe members consented to participate in a University of Arizona study that looked at the relationship between diabetes and inheritability. Later on, researchers used their samples to link them to their ancestor’s in Asia. This was not only a breach of ethics, but left Havasupai tribe members struggling with their own genetic history which disproved previously-held beliefs. So, it is not surprising that earlier this year the GP was facing firm opposition from almost every federally recognized tribe in North America.18 While the GP offers scientific answers to who we are and where we come from, many indigenous groups are satisfied with their own answers without such genetic testing. The overarching assumption in the GP however, is that we all want scientific answers to these questions and that these answers would not have far-reaching consequences on traditional or indigenous peoples.18
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Health Care For the GP’s North American director, Theodore G. Schurr, his motivation to enlist American Indians is clear. These indigenous people hold the answer to missing migration gaps. The scientific community accepts that American Indians were the first Americans to cross the Bering Strait land bridge from Siberia to Alaska approximately 20,000 years ago. Yet, there is no scientific evidence to know when precisely they arrived and through which routes they travelled. While this motivation may seem harmless enough, it has the potential to impart consequences on the social identity of American Indians. The co-chairman of Alaska Area Institutional Review Board, Dr. David Barrett, is well aware of the risks that could undermine the well-being of American Indians. He supports the argument that genetic ancestry information could be used to discriminate access to resources. For instance, what happens when for your entire life you have considered yourself an American Indian, and now, genetic testing indicates that you are originally from Siberia? It is plausible that health services and care facilities may become more difficult to access.18
does not offer a serious long-term plan to adequately protect indigenous peoples’ rights whose genetic information is purportedly very valuable to the GP.23 Presently, there is no existing governing international board involved such as the United Nations to ensure that the human rights of these vulnerable groups are upheld. In spite of investigators working with recognized international leaders, ultimately the GP has no tangible legal clout over the actions of other governments and laws. Through participation, the indigene is at the mercy of subsuming indigenous definitions and cultural constructs to genetic definitions and
Land Rights Many repercussions for land rights could also ensue. For instance, if genetic ancestry data offers conflicting information against the traditionally established land rights for A Cakchiquel family in the hamlet of Patzutzun, Guatemala. (F. Charton / UN Photo) specific groups, than it is plausible that land rights could, in fact, be revoked. Before the advent of ancestral genom- social constructs. Perhaps what is harder to grasp is the notion that nonics, one could argue that this scenario was implausible. Nowadays, gov- participation from these groups might be in their best interest. ernments have authorized the use of genetic testing to help resolve land conflicts and ancestral ownership claims between Tibetans and Chinese, A Story of Assumptions and Omissions Serb and Croats, and Azeris and Armenians.19 Additionally, in France, The GP makes one large assumption that we all want to know the parliament has proposed to use DNA testing as immigration strategy answers to the questions of where do we come from and how did we to verify whether immigrant family members living abroad should be get here today, which is simply not true. While indigenous peoples are granted citizenship to join their family in France.20 of key scientific interest because they hold the most genetic differences While Genographic Project’s overseer, Spencer Wells, may not ac- from the population, the GP omits to mention that their participation knowledge that genetic testing or inclusion in the study would under- comes with differential benefits and an increased risk in comparison mine indigenous peoples rights to land or health, the real world outside to the general population. This omission is particularly troubling since of the scientific community has already begun to use these tests for non indigenous communities are most vulnerable to indiscriminate use of medical, non-scientific purposes to enact discriminatory policies against genetic testing compared to the rest of the population. At the very least, those who have less power. the GP’s results will make indigenous groups question their identity and The bigger questions are that in spite of the Genographic Project’s cultural beliefs, possibly lose their access to basic necessities like health blind spots, how are indigenous and traditional peoples benefiting from care and land, and in the worst case scenario, jeopardize their survival. their participation in the project and are there any measures taken by Instead, the GP hopes to appease us with the answer that we are all the GP to ensure their interests are protected? interconnected through our common ancestral past and chooses to focus on how we can all benefit from their research findings. While this is a Biting the Hand that Feeds You nice bed time story, in many ways it couldn’t be further from the truth. The only tangible benefit that the GP offers to the indigenous and traditional peoples is the Genographic Legacy Fund (GLF). The fund is intended to support cultural, linguistic and educational programs for in- Lauren Chakkalackal graduated with an HBSc in Psychology from McGill University. Curdigenous people.21 Although it is not limited to indigenous groups par- rently, she is working as a research assistant at Centre for Mental Health and Addiction ticipating in the study, indigenous peoples or communities apply to this (CAMH) in Toronto. Her previous job experience was in mental health research, developing grant and qualify for certain types of support.22 It appears that the GLF presentations and documents on post traumatic stress disorder (PSTD) in Sri Lanka and offers short-term relief to qualifying indigenous groups with no funds al- immigrants. She is interested in pursuing more global health research and work in the located for land acquisition cases or protection of human rights. The GLF area of mental health.
Volume 2 | Issue 1 | Fall 2007
Volume 2 | Issue 1 | Fall 2007
Volume 2 | Issue 1 | Fall 2007
Vision to Mission
Becoming part of a global health movement
This inaugural section in Juxtaposition Magazine seeks to detail the experiences and perspectives of inspiring and motivated individuals committed to improving the health of marginalized populations globally. In this issue, we explore the work of two extraordinary women who have been actively involved in local capacity building, provision of medical care and advocacy.
Part I: Making a name for surgery in developing countries… If you ever have the chance to listen to one of Dr. Alexandra Mihailovic’s inspiring speeches, definitely seize the opportunity. At the 2007 University of Toronto International Health Program Conference earlier this year, Dr. Mihailovic gave an enlightening and captivating keynote address detailing her experiences with conflict and war in Africa and more specifically, with child soldiers in Uganda. One of the many take home messages from her fervent talk was a call to prevent the possession of “small arms for small arms” and for our Canadian government to play a more active role in global health politics. It is this passion that has fueled the University of Toronto surgical resident to head to various parts of the world to alleviate childhood injuries and bring much needed access to medical care. Dr. Alex talks with Juxtaposition on her experiences working as a surgeon in low income settings, her passion for international work, what she feels embodies fear and empowerment and ultimately what she feels the future holds for global health work, particularly with respect to international surgery. Juxtaposition: In many interviews, Dr. Paul Farmer has emphasized that for real change to occur in global poverty and social justice, another social movement has to occur for global health; (such as was the case with the civil rights, women’s rights, gay rights movements). Do you agree with this, and if so, what do you feel embodies this global health movement? How does your work play a role in this movement? Dr. Mihailovic: It would be difficult to argue with Paul Farmer’s expertise on anything to do with Global Health! Unlike women’s rights and gay rights, poor health is the product of a complex set of complex injustices. A social movement for global health would be indirect and would not be specific to health. Dichotomies in global health are symptoms of the greater diseases of oppression, corruption, corporate greed and unfair trade laws. The health state of the global poor is not the result of persistent neglect by the west but instead, a result of a more active process which ensures a state of deprivation benefiting larger global economic interests. The fact that companies are moving to the third world at a rapid rate motivated by shockingly small wages, impunity to human and worker’s rights regulations, impunity to environmental standards and often deliberate use of land and infrastructure that takes away from a populations’ ability to provide for themselves points towards a deliberate pursuit of deprivation and oppression as opposed to these results being unexpected and unfortunate outcomes of disguised development. Patent laws
for drugs which make essential medications for HIV, TB and malaria inaccessible, the deliberate recruitment of health care workers and other trained professionals, and of course, the enormous profit gained by sustained conflict, sales of small arms and light weapons and exploitation of natural resources, all speak towards the same fact of pre-meditated oppression of the world’s poor. Therefore, a social movement towards global health has, in essence, nothing to do with addressing global health directly, but rather, highlights a need to declare intolerance for the lengths taken to maintain our standard of living. Demanding fair and equal trade, transparency in business, autonomous resource management in low income countries and working standards equal to those we demand at home, is how the health of the world’s poor, and therefore dichotomies in global health will be addressed. A social movement will be one for equality and all human rights, and hopefully people will become healthier as an outcome. My personal work plays a role only in exposing the dichotomies that exist. The longer one spends in any field, the more the above realizations seem like common sense. Although there is obvious benefit and great satisfaction in acutely caring for a surgical patient in these environments, the only impact that we can truly make as westerners involves acting as a voice for those who have none and to highlight the outcomes of how our own governments are contributing to this situation. Without the numbers, photos and stories, people here just don’t understand or care enough to change their own behavior and speak up at home. Juxtaposition: What personal experiences or events ignited your desire and passion to pursue working in global health and development? Dr. Mihailovic: I remember knowing from a very young age that I wanted to be a doctor and really never left the medical path from as long as I can remember. Both my parents worked in the far north of Ontario (as a midwife and a forester), and were always providing services for people in their communities, whether it was on a first nations reserve or in our primary schools. They certainly set an example of choosing a profession that you could somehow contribute to your community with and be of use. I think actually realizing that I’d focus on global health occurred while working in Central America in 1996. I had two separate experiences during this time. One was with a small group of friends in St. Gabrielle, Guatemala where we volunteered as part of a small, informal health project, my friend Tim and I walked house to house counting the number of children and documenting any health concerns in the households. Something that really struck me was the large number of undiagnosed chronic illnesses and disabilities/deformities in the families which people just accepted as part of their lives. The dichotomy of health care provision and the enormous burden of disease in this setting
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became very obvious to me, as well as the simple and cheap solutions to many of these ailments that we take for granted in Canada. Other experiences in Central America included volunteering with a plastic surgeon in Honduras for a year while I was working as a kayak guide in the region. His practice focused on reconstruction of child deformities. Needless to say, seeing the effect he had on these children’s lives with simply 2 hours of work with a scalpel solidified my interest in surgery, which I never wavered from. Not only did I feel enormous gratification in using my hands and the satisfaction of such dramatic outcomes when the operations were finished, but I also became aware of the gap in surgical care that existed in the developing world and the apparent neglect of the international health community in addressing surgical disease as a global health priority. Since completing medical school and now my PhD, I have had the opportunity to work in India, Nepal, South America and 13 African countries. Regardless of the setting, the same social determinants of health, cost effectiveness of acute treatment and disconnect between health policies and grass roots needs have been consistent and fueled my interest in this field. I honestly believe that once you’ve been exposed to the health crises in parts of these countries and actually taken the time to get to know the people who are affected, it is impossible to come back to Canada and not seek ways in which our opportunities here can be expanded to include these forgotten and neglected. Juxtaposition: Our theme for this issue is “Fear and Empowerment”. What do you think the relationship between fear and empowerment is in global health? Could you provide a specific example from your personal experience? Dr. Mihailovic: This question can be answered on so many different levels and are reflected in so many varying situations. When we talk about global health, I think in general its important to refer not only to recipients of aid but the paradigm of the “foreign aid” interaction in general. In other words, those who are in need of aid/healthcare/development and those who feel that it is their duty to provide it. What immediately comes to my mind with the pairing of terms “Fear and Empowerment,” is what has resulted after a decade or so from “development”, “foreign aid” and “humanitarian assistance”. The notion that “they” are in need and “we” need to give them what they need has created a mountain of problems in effectively addressing the health of the global poor.
The health state of the global poor is not the result of persistent neglect by the west but instead, a result of a more active process which ensures a state of deprivation benefiting larger global economic interests.” Fear obviously inhibits empowerment. Fear of guilt, failure, greed and urgency on the side of the donors inhibits them from being able to think of solutions which address the complexity of global health problems. Instead, money is thrown at non-sustainable programs in an urge to cut a piece of the development pie and maintain program funding. Consequently, they are disempowered from being able to look at bigger picture solutions and the contributions of their own governments and lifestyles, leading us into the vicious cycle of decades of ineffective programs and policies providing for the poor. On the other hand, fear on the side of the recipients manifests in itself through the lack of con-
fidence in their ability to direct programs according to their community’s needs and speak up on where aid is misled. As well, there is the fear that funding and assistance will not be available if donor conditions are not met. This in turn inhibits autonomously derived solutions which would otherwise be sustainable and culturally sensitive. Northern Uganda is where most of my personal experience has been focused. The 20 year civil war in this region has left local health workers, teachers, community leaders and citizens completely dependent on western assistance leading to a self-view of disability and weakness. I have had numerous experiences where doctors and researchers who were experts in their fields would seek my involvement or advice simply because they believed that “it will be better” or “they will fund it” if you’re involved. Despite this being a disturbing and uncomfortable situation to be put in, this sense of incompetence is a result of western attempts to empower supposedly. Unfortunately, the current model of foreign aid and global health often removes local input into programs, and hence leads to local fears of inadequacy. Fear, in any way, is the antagonist of empowerment, whether it be through a displacement camp or in the United States post 9/11. In order to achieve “empowerment”, we first have to alleviate fears of inability and failure, or the opposite outcome of “dependency” will be created. Juxtaposition: How do you evaluate empowerment in the communities that you have served? Dr. Mihailovic: “Empowerment”, in my mind, is one’s ability to attain needed resources and political participation without assistance or coercion. Measurement of empowerment in aid programs could involve nutritional indicators, health facility usage, education enrollment or political engagement. When a woman dies during child birth due to malnutrition, social isolation or through an inability to pay user fees or to access health services, this can be a proxy measure of what one considers “disempowerment” from a health perspective. It can be argued that this term refers to something different at the social or political level; but from the perspective of a physician, if someone is needlessly dying from a treatable or preventable medical condition, then they have been robbed of their basic right to health and, in some way and by some party, have been disempowered. Juxtaposition: Your work has primarily focused on conflict, trauma and injury within the realm of your surgery background. Among the myriad of health issues such as infectious diseases, poor health care infrastructure, and chronic diseases, what category do injuries and disabilities fall under? What attention have these issues received and what can be done to push trauma and injury further onto the international agenda? Dr. Mihailovic: According to the World Health Organization, injuries actually fall under their own category as “violence and injuries”. Specifically, physical injuries are in this category and are divided into “intentional” and “unintentional” injury. Intentional includes injury intentionally inflicted on one’s self (suicide) as well as on others (stabbing, shooting, beating, rape, violence) and can be either one on one or collective (war, conflict). Unintentional injury includes the broad category of road traffic injuries (either as pedestrian, passenger or driver), burns, falls, poisons, drowning and any other physically inflicted harm. Injury and trauma have received proportionately far less attention than deserved in global health funding and research focus. In 1997, Murray et. al. released a “burden of global disease” paper in the Lancet
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1-7, which, through an analysis of determinants of global health issues in 1997, projected how these patterns of injury and disease would change by the year 2020. To compare health concerns they used a measurement called DALY or “Disability Adjusted Life Year”, which accounts for not only deaths due to a particular ailment but also the years of productive life lost due to morbidity/disability. Thanks to this new measurement tool, for the first time, there was a de-emphasis on infectious diseases (predicting that many of the contributing factors of communicable disease such as water sanitation and living situations would improve) and diseases such as mental illness and injuries were projected to dramatically increase and account for a much higher proportion of disease burden. Injury, specifically, was predicted to increase worldwide due to a rise in urbanization, development, pollution, violence and access to machinery, cars and weapons. For example, road traffic accidents already kill over 6 million people a year (98% of which live in low or middle-income countries). But by 2020, low or middle-income countries are predicted to account for almost double the current proportional burden. Much interest was sparked by this study in the global health research community and road traffic injury has become a growing part of the WHO agenda since then. One of the biggest concerns with injury in low-income countries has been the perception that providing all levels of surgical care needed to treat these injuries - i.e. trauma surgeons, blood supply, critical care, hospital resources and rehabilitation needs - is far too expensive for the health budgets of most countries. To put money to- The red retro-reflective bands wards anesthetic machines and surgical instruments is an extraordinary expense compared to antibiotics and fluids. However, this is a very narrow view on health services as many surgical costs are only spent the one time but can be used over and over and distributed over several thousands of patients. Training of local doctors in basic life saving surgical skills can effectively address the needs of many impoverished nations and can be achieved even in facilities serving the hardest hit of populations like those in urban slums and conflict zones. Having a surgeon available when a child is injured, for example, is the difference often between both life and death and then chronic disability and productive employment. Globally, road traffic is the number one killer of children between the ages of 4 and 15 and kills as many children as TB and malaria combined in this age group. We are currently watching Africa’s work force be robbed once again as a result of injury/trauma in the young and middle aged which is a situation that could be curbed through ensuring simple, but adequate surgical services in all facilities. Otherwise, we will continue to watch the endless cycle of poverty and dependency on aid. The World Health Organization and researchers around the world are currently working to define the field of international surgery and its role in global health. Governments of low income countries are also starting to train health care workers in this field as they are now recognizing its importance in curbing an emerging epidemic of disability and early death. I’m very optimistic about surgery’s role in global health and the contribution of surgery to reducing the enormous dichotomies in health we currently observe in our world.
Juxtaposition: What did your doctoral research focus on and how can its results be applied practically into programmes? Dr. Mihailovic: My PhD involved collecting data from a hospital Emergency Room for 12 months on all children who presented with an injury in Kampala (capital of Uganda) and comparing this data with that collected in the war zone in the north. I also conducted a 2500 home community survey through the public school system lists. The point of the survey was to capture injuries happening in children less than 14 years of age, the cause of the injuries and then ask many questions pertaining to variables in my conceptual framework of access to care. These covered everything from demographic variables to socio-economic variables to perceptions of need. My analysis showed that the majority of injuries in Kampala were children who were getting hit by cars while walking to school. It was pretty shocking to realize that almost 30% of all injuries to children presented to the hospital were from this and that these types of injuries were also some of the most severe that the hospital saw. The numbers that we collected, if extrapolated to the rest of the country would see upwards of 100,000 children a year being hit by cars and either killed or permanently disabled in this small country! In response to this, I did some research into solutions to this problem including road safety education, reflectors on clothing (for those walking both in day and night) and on community engagement in prevention programs (i.e. drivers licensing boards, community awareness campaigns.). At the time, a friend of mine from New York was looking for an endeavor to financially support (he was involved in fund-raising previously), and so we co-founded an NGO based in New York and decided to put in place a road safety program for the Ugandan children who were in my study population as a pilot study to see if the intervention would be effective. The intervention consisted of 3 parts: pamphlets being sent to all children’s homes with information regarding road safety on them, a one hour road safety instruction lecture given by a hired worker at the injury control center (a Ugandan based NGO) as well as a 3-inch wide, retro-reflective band which was to be worn around their upper arm or on their school bag when walking to school each day. Surprising to all of us, when compared to the same time period the year before, we found that the risk of a child being hit was decreased by 93% after the intervention. The entire program cost us approximately $4000 US to implement which translates into approximately $120 US per child saved from death or serious disability. In Canada we consider 50,000 dollars per life year saved a bargain! This proved to be an amazingly simple, cost-effective solution to a problem that could possibly deplete a country from its working class. The key to its sustainability lies in the engagement now of ministries, communities and leaders in making sure these types of interventions become a part of national policy for public health alongside programs aimed at malaria and maternal health. Alexandra Mihailovic completed an undergraduate degree at the University of Waterloo in Physics and Biochemistry and then went on to pursue a degree in Medicine from McMaster University. In 2001, she began her general surgical residency at the University of Toronto and entered the Surgical Scientist Program in 2003 to complete a PhD in clinical epidemiology. She is now working as a research associate at UofT and will eventually become a Trauma Surgeon with St. Michael’s Hospital. To date she has worked in 14 African countries and continues to make the continent her focus.
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Vision to Mission
Part II: Giving a voice to street kids in Ethiopia…
Jenna Hoyt and the Little Voice team in Ethiopia
With a little bit of infrastructure and a lot of passion, dedication and hard work, Jenna Hoyt and her colleagues at Little Voice Foundation have been instrumental advocates for the lives of street children in Addis Ababa, Ethiopia. Since 2006, Little Voice Foundation has brought food, shelter and education to over 25 street children who’d previously been faced with starvation, violence and limited future employment opportunities. Through her experiences in Ethiopia, Jenna offers Juxtaposition insight on her work with Little Voice, what fear and empowerment embody and focuses on collaboration and partnerships as the key to sustainable international health projects. Juxtaposition: In many interviews, Dr. Paul Farmer has emphasized that for real change to occur in global poverty and social justice, another social movement has to occur for global health; (such as was the case with the civil rights, women’s rights, gay rights movements). Do you agree with this, and if so, what do you feel embodies this global health movement? How does your work play a role in this movement? Jenna: In order to produce real change in global health, a revolution is essential. However, I think that the role of the West in this much-needed revolution is poorly understood and not readily acknowledged by governments and civil society. If you ask the lay person what is needed to achieve “good” global health, a likely response would probably focus on vertically angled vaccination programs, more development aid and those higher levels of pharmaceutical investment, which in the past, has overcharged too much for the medications. What is not addressed is our own individual role in feeding a system that suppresses and oppresses these countries and cripples their
national agenda towards health care. In essence, the revolution needs to come from us. It is us, the populations in the first world, who need to stand up to our governments and demand fair trade and ethical foreign policies. It is us who need to boycott multinationals that use and abuse the individuals in the third world and demand fair and equitable treatment of their employees. It is us who need to recognize that our economy and lifestyle is not sustainable if we want to see low income countries prosper, achieve accessible health care and combat extreme poverty and hunger. It is us who need to critically need to recognize and examine the macroscopic structures that keep the developing world reliant on us for food and goods and most importantly, it is us who need to ask not what they can do achieve global health but what we must change in order to allow them to achieve it. Juxtaposition: What personal experiences or events ignited your desire and passion to pursue working in global health and development? Jenna: Watching people die needlessly in agony and obscurity only to become a statistic led me to realize that not only has our complacency towards global issues contributed significantly to the current crisis, but that the very system within which we exist exacerbates the crisis infinitely. I have personally been empowered on two levels through my experiences in Ethiopia and Africa at large. First, working with the people on an individual level and finding myself completely inspired by the courage with which they face these challenges. Secondly, by educating myself about the global structures and forces that exert themselves on these populations and becoming an advocate for social change within developed countries, such as Canada.
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Juxtaposition: Our current theme for this issue is “Fear and Empowerment”. What do you think the relationship between fear and empowerment is in global health? Could you provide a specific example from your personal experience?
to start this NGO, and why have you focused on Ethiopia as your first target country?
Jenna: My first experience in Ethiopia volunteering at an HIV/AIDS hospice opened my eyes not only to the issues and challenges facing Jenna: To me, empowerment is about choice. For an individual or com- Ethiopians, but also to the richness and uniqueness of their culture and munity to be empowered, they need the tools, resources and knowl- customs. I was in love sufficed to say. Subsequent visits deepened my edge to make choices and exert control over their situation. The relation- friendships with the two individuals who currently run the programs ship between fear and empowerment within the framework of global in Ethiopia and also allowed me to work within communities in Addis health is simply that without knowledge, resources and tools individuals Ababa and to learn more about how they perceived their situation and and communities are not able to prevent and treat illness and epidemics what issues they felt were most important and relevant. and this incapacity may lead to fear. The creation of Little Voice Foundation was almost an afterthought If you have no control over your situation, you will inevitably fear the as we had already acquired the school and now we needed a way to outcome. If you give someone knowledge about raise awareness how to effectively re-hydrate a child with acute waand funds. We It is us who need to boycott multinationals tery diarrhea and provide them with access to the also had plans that use and abuse the individuals in the third antibiotic to kill the bacteria causing it, they will no for the residence world and demand fair and equitable treatment longer fear acute watery diarrhea because they are for street chilof their employees. It is us who need to recognize now in a position to exert control over the situation. dren and the To strip them of that knowledge and resource is to that our economy and lifestyle is not sustainable expansion of our leave them helpless and in fear of the outcome. school. In short, if we want to see the low income countries prosEmpowerment therefore is heavily built on colthe projects acper, achieve accessible health care and combat laboration. A person or community is not empowtually preceded extreme poverty and hunger.” ered if they are told “what to do” and “how to do the NGO, which it”, there is no choice in that situation and thus no is very unconempowerment per se. Empowerment is a process that necessitates par- ventional, but has turned out to be a success story. The school and home ticipation from the individual or community in order to create social ac- for children were conceived out of a community-identified need, a wontion that leads to increased control over their quality of life. Thus, if that derful partnership between myself and my Ethiopian colleagues, who individual or community perceives an action as being life-threatening, a inspire me on a daily basis with their determination and motivation to shift in strategies needs to occur so that the positive outcome remains work with children and families, and a collaboration between the rethe same but steps needed to get there are meaningful to the individual sources and strengths of the community and my access to funds from or community. It is impossible to empower an individual or community the developed countries. if WE identify their needs, devise strategies to achieve positive outcome and then force the program onto the target population. Again I stress, Juxtaposition: What is the mandate of Little Voice and in what areas without collaboration, choice and control there is no empowerment. would you like to see it grow?
Juxtaposition: How do you evaluate empowerment in the communities that you have served? Jenna: Whether or not there are designated empowerment markers I am not sure. The most reliable method I can think of is the degree to which the program, knowledge or tool is being used by the population and how effectively it is being used. If it is meaningful to the target population and if it was designed in collaboration with the target population, and now it is being implemented and used by the population, I’d say it worked. I have always conceptualized the process of empowerment as nonlinear, perhaps because linear implies there is only one way and one direction. I see it more like overlapping circles; both parties have knowledge, resources and values and the collaboration and participation of both circles leads to the empowerment of all involved. The vehicle of empowerment is dialogue, discussions, community forums and assessments, individual interviews, sharing of ideas and values and a mutual understanding of differences and similarities. Juxtaposition: The work through your NGO, Little Voice Foundation has been primarily focused on building capacity of local communities, and in educating and housing street youth. Please describe how you came
Jenna: Little Voice is committed to working with struggling communities in order to create sustainable projects that are run by the people for the people. The projects are conceptualized based on the needs and resources of the community and can focus on health care, education, housing or hospice facilities. There is lots of room for growth within the projects that we are currently focused on. We are in the process of expanding our school to Grade 8 and increasing the number of completely subsidized students. We would also like to use our school as a resource centre for the community and support them in the creation of community forums and women’s groups. The future of our Home for Children is to create satellite group homes for girls and boys as they enter adolescence. These group homes will consist of 5-6 girls or boys who will live independently together and run their household while continuing their education or skills training. These group homes will have a support staff and be supported financially by Little Voice for all the basic needs. The idea is to slowly increase the independence of children while still providing all the necessary support until they have completed their education and/or training and are able to create a sustainable future for themselves. As for new projects on the horizon, I would eventually like to work in rural health care in Ethiopia. Once I complete my RN training I hope to work with Ethiopian nurses to establish a rural health network that
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consist of small community health resource centers that can be easily accessed by rural communities. The goal would be to train individuals (mostly women) in these rural communities to deal with basic health needs. The centers would be equipped with basic tools and medications so that the community would have access to information and resources. This project would also have the effect of empowering local women with health knowledge and hopefully increase their status within the community. Juxtaposition: What challenges have you encountered since starting this initiative, and how have you overcome them (i.e. Strategies). Jenna: We have faced lots of challenges and that is all part of the journey and learning experience. For the most part we’ve been able to overcome obstacles by working together to create solutions or find new ways of problem solving and looking at issues. Our strategy is partnership and collaboration as the more knowledge we acquire, the better equipped we are to jump over the next hurdle. Just as there is infinite knowledge, there are infinite people to learn from. We network and share with other local NGO’s in order to fill gaps and learn from each other and we are constantly seeking motivated individuals who are interested in helping us grow and expand through ideas and dialogue. A constant challenge is fundraising and achieving financial sustainability for the long term, which leads me to the topic of sustainability… Juxtaposition: What do you feel it will require in order for Little Voice to become sustainable? How do you define sustainability? Jenna: Sustainability can have a myriad of meanings and therefore it is important to explain what is meant by term and in what context. One of Little Voice’s core principles is that of sustainability in the context of the community. In order to ensure that our projects are successful, we actively seek to involve the community in the work that we do. This type of sustainability is intimately connected to empowerment in that the needs, strengths and resources of the community are identified by members of the community and together it is decided how we can best work together in order to achieve the goals. All of our programs are staffed with Nationals and our Program Director is Ethiopian. This creates employment opportunities within the community and uses the available work force. Every individual we contract to perform a service or skill for our projects is a local tradesperson thus helping to stimulate economic growth. Using community resources not only allows our project to be sustainable but also provides the community with a vehicle through which to contribute to a positive solution to some of the countries social issues. Thus, being sustainable means using the information, skill, resources, energy and enthusiasm that are found in the community to meet actual community needs. Financial sustainability is also a focus for Little Voice as neither of
our projects generates any form of income. Thus far our projects have run on Canadian volunteer power, working hard to organize fundraising events and campaigns, and the kindness and generosity of friends, family and increasingly the public. However, we are actively seeking a sustainable alternative such as establishing a non-profit fair-trade shop in Canada or a small local business in Addis Ababa, Ethiopia. We are pursuing grants and funding from governments and other large donor organizations but our ultimate goal is to fuse awareness-raising with fund-raising in such a way that the basic needs for our projects are covered by the income generated. Juxtaposition: How can we as Canadians contribute to Little Voice Foundation? Do you have voluntary positions, or ways of donating money? Jenna: Creating an intimate connection between the developed and developing world has always been at the heart of our work in Ethiopia. The response that I’ve received from friends and family upon returning from my first experience in Ethiopia inspired me to be that link, to help people here support empowering strategies there. Little Voice has become an amazing vehicle for that intimate connection by allowing people to get involved and truly see the impact of their efforts on the children we are supporting in Addis. We have successfully established a group in Ottawa who work together on fundraising and events within the community and we are working to get a group here in Toronto. Although monetary donations are essential we are firm believers in people-power and the more people who get involved the more successful we become. Our next move is to begin work within the school systems to educate and stimulate young minds about global issues, to get them excited about grassroots initiatives, like Little Voice, and to help them plan, organize and carry-out fundraisers in order to feel connected to these issues in a supportive way. We encourage anyone and everyone to visit our website at www. littlevoice.ca and contact us for further information on how to get involved and above all…help spread the word and Be a VOICE!
Jenna Hoyt graduated from the University of Ottawa with a B.A. in Psychology. After having traveled extensively throughout Africa and volunteered in a number of local NGOs in Ghana and Ethiopia, Jenna co-founded Little Voice Foundation, an organization providing education and shelter to street children. Upon completion of her nursing degree at UofT, she plans to use this clinical knowledge to work on rural health care initiatives in Ethiopia.
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Anxious About the Gates A Critical Look at Canada’s Medical Screening Program By Sarah Wiebe In the margins of community, at the gates of cities, there stretched wastelands which sickness had ceased to haunt but had left sterile and long un-inhabitable. For centuries, these reaches would belong to the non-human. - Michel Foucault, Madness and Civilization
Immigration, according to the Department of Citizenship and Immigration Canada (CIC), is envisaged as the need to “support global humanitarian efforts to assist those in need of protection.” With over 18.4 per cent of Canada’s population comprised of foreign-born immigrants, Canada has become a major epicentre for individuals to seek either refuge or establish residence. Despite the laudable aforementioned goal of the CIC, some practical dimensions of this objective have yet to be met and indeed, raise important questions regarding current Canadian policies governing the immigration process.
Biopolitics and Citizenship Why do we separate life between citizens in this way? A theory of biopolitics is crucial to the investigation of a response to this question. As Foucault articulates in The History of Sexuality, biopolitics refers to the governance of life itself. The governance over life centres on several elements including the conceptualization of the body as a machine: “…its disciplining, the optimization of its capabilities, the extortion of its forces, the parallel increase of its usefulness and its docility, its integration into systems of efficient and economic controls, all this was ensured by the procedures of power that characterized the disciplines: Canada’s identity is grounded in being a multicultural nation, one an anatomo-politics of the human body.”2 that accepts diverse people from different cultures. This image has hisThe supervision of the body operates as a series of regulatory contorically distinguished Canada from trols. In this respect, the regother countries such as the U.S., ulatory controls of immigra...in Canada, immigrants are not only making Canada’s identity unique. tion and the surveillance of However, in practice, Canadian im- screened as potential security risks in the foreign nationals, including migration policies and screening prosurveillance of health and cesses demonstrate that a variety of traditional militaristic sense, but also prebodies, can be understood barriers exist at the gates. As part of sented in Canadian discourse as a threat as a biopolitics of the popuCanada’s immigration process, immilation. Life itself is carefully grants are not only screened as po- to economic stability and are consequently calculated and managed in tential security risks in the traditional screened and surveyed for health concerns.” order to achieve the material, militaristic sense, but also evaluated productive, economic goals as a threat to economic stability and of the state. In The History of are consequently screened and surveyed for health concerns. Playing Sexuality, Foucault demonstrates how biopower is indispensable to the on the fear of the “outsider,” newcomers are screened on their physi- development of capitalism. He argues that capitalism would not have cal and mental health as part of an assessment of their likelihood to be been possible without the controlled insertion of bodies into the machincontributing and productive members of Canadian society. This modern ery of production and adjustment of the population into economic propolitical subjectivity is predicated partly on the notion that individuals cesses.3 Biopolitics operates to control bodies and manage their health must be healthy in order to have political voice and agency. for maximum economic profit. Empirically, the state literally manages its Referring to the political processes enacted by governments to cat- populations through the use of medical examinations as a requirement egorize immigrants, it is argued that our medical screening program for citizenship. In light of this governance over bodies, the unhealthy, can be understood through Michel Foucault’s analysis of biopolitics. This non-citizen is unsuitable for the productive goals of the state. article therefore, examines the correlation between biopolitics – the How then, in Canada, are bodies constructed and governed in order governance of life – and immigration by focusing on the CIC policy and to meet the productive goals of the state? legislative discourse. Ultimately, we need to move beyond the strict modern understand- Fear of the Foreign Other and (Dis)Qualified Life ing of citizenship, which only values healthy and productive citizens. In Citizenship operates as a political category to formulate who we are pursuit of empowering the disadvantaged and marginalized immigrants and how we need to be in order to live as political beings. Ultimately, in Canadian society, this entails re-conceptualizing the category of the immigration policy is a means by which a state controls the member“citizen” in order to move beyond our current climate of fear. ship of its polity by selecting who is and who is not eligible for entry, residence and eventually, citizenship. Despite the globalization move-
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ment, immigration policy is an area where Canada continues to exercise sovereignty – a form of territorial integrity – through the selection and control of who enters and exits the country. Within our globalized world, the “best” immigrants are those who the state perceives as economically desirable. These immigrants are viewed as potential citizens who can enhance Canada’s competitive position in a world economy. The intent of Canada’s citizenship and immigration program is outlined in the Immigration and Refugee Protection Act (IRPA), which will be evaluated further in this article. Despite the need for immigrants to fulfill labour market needs, racial and ethnic biases remain pervasive in Canada’s currrent, contemporary political climate. We have a labour shortage in Canada, especially in the trades, yet we continue to reject immigrants and refugees who could gain employment in these areas. This climate reflects a culture of xenophobia operating in Canadian society, which motivates our view on others (outsiders), in Canada (landed immigrants) as well as others afar.
migration, law enforcement and national security databanks), the state is able to connect people to established records. This process of classification exists at the discretion of immigration specialists. In fact, as of October 19, 2006, biometric field trial technology has operated at the border through the use of fingerprinting and facial recognition for newcomers to Canada.4 This reflects another way by which the state manages the identity of its population, distinguishing between its citizens and potentially threatening foreign nationals. Newcomers exist outside the realm of citizenship, and remain constructed by the state as perpetual “risks” which must be managed and monitored. As a result, the state’s development of surveillance technologies strengthens its power by enhancing its knowledge of the population. Bodies and the Border Medical practitioners conducting health screening for immigrants and policy adjudicators have much discretion in determining how individual cases match up with the objectives set out in the IRPA and Regulations pertaining to immigration. Immigrants are evaluated according to two key criteria: whether their health condition would endanger public health and safety, and whether their condition would place excessive demand on health or social services.5 A requirement for entry into Canada is that each newcomer – including students and permanent residents – must undergo a process of medical scrutiny. This exemplifies the correlation between health and security and the fear of immigrants as outsiders and potential health risks to Canadians. Foreign nationals must go through a process of medical examination to be deemed acceptable for Canadian citizenship. Not only are immigrants evaluated on pre-existing health conditions, but also assessed for their potential risk for the onset of illness.6 This stig-
(Anna Kari / www. annakari.com)
We are constantly bombarded by news stories on war, terrorism and outside threats. As a result, this climate of fear “necessitates” the tighter securing of our borders, which, as a further consequence, has led to a charged political discourse, concerned with screening and surveying the flow of immigrants in order to “meet” the economic “needs” of the insider society. We are told we need to tighten our borders to protect the insider population in Canada. However, this tightening comes face to face with rejecting and discriminating against foreigners - “strangers” – at the gates of our society. Recent security measures established largely since 9/11 exemplify the connection between immigration and security in a contemporary political climate. Foreign nationals are depicted as potential threats. Surveillance marks bodies as foreign, turns them into data, and reifies a distinction, or border between residents in Canada. Establishing stable identities of its subjects is of central concern to the modern nation-state. Through the use of databases (including social services, as well as im-
matizes foreigners as being prone to illness and exploits the fear that foreigners bring diseases to ‘our’ country. These policy objectives inherently demonstrate a connection between market principles and health. In particular, section 38(c) of the IRPA, projects a concern that immigrants who are unhealthy would be an economic burden to Canadians. There is an assumption that they are less likely to be productive and contribute to the Canadian economy. In fact, some residents with certain illnesses must undergo surveillance as a condition of their acceptance. These include inactive TB (those who
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have active TB are rejected) and treated or positive syphilis.7 In order to ensure that immigrants would not place a burden on the Canadian welfare system, they must go through a process of medical scrutiny. This value-judgment over life also leaves open the space for rejection based on disability – deafness, blindness, mental illness, etc. – these forms of disability would indeed place a “demand on health and social services” and can legally be rejected. By rejecting a residency claim based on an individual’s chronic condition, the state governs someone’s life and determines its value in terms of its economic impact on the state. Consequently, the state dichotomizes life and formulates people into categories of “healthy” or “unhealthy”, “accepted” or “rejected”, “valuable” or “worthless”, “resident” or “outsider”. In Canada, being political necessitates citizenship and being a citizen necessitates good health. In effect, to be worthy of citizenship, A Serbian refugee from Kosovo sleeps in a park in Kraljevo, Serbia. To force the government to re-house them they applicants must be healthy and productive stayed in the parks. (Anna Kari /www. annakari.com) members of society in the present and in the are making a claim to the value of a particular individual life, excluding future. To this effect, examiners consider future health when evaluat- this being from political existence. ing potential risk. As a result, the potential citizen exists in a political dilemma where the potential risk of illness remains at the empirical Moving Beyond the Gates and virtual border of the citizen’s identity. To be unhealthy is unpolitical This article demonstrates a concern with the value of health as a and illness exists as a constant potential threat to our modern political necessary requirement for political subjectivity and agency. Whether resubjectivity. jecting outsiders based on disability, or tracking a resident with inactive TB as a condition of acceptance, the state places value on certain human You are not worthy! Are we? beings, creating distinctions amongst its subject population. This form As “humanitarian” Canadians, we like to think of ourselves as wel- of demarcation operates as a type of discrimination. The state makes coming people, a notion often lauded as part of our Canadian values. a claim to the value of the citizen’s life at the expense of a foreign Yet, who we are as Canadians is undeniably defined by what we do and life. Even more problematic than discrimination, the state excludes the do not accept. We may not realize that while we feel content with the unworthy life from political voice. Why must identity be formed as a life we accept, we may not know enough about the life outside of our negation of some others? To be healthy necessitates marking out the ill, agreeable range. What do we really know about the life we reject for and to be a citizen necessitates a distinction from the foreigner. As long citizenship status and “send back”? as our identity is formulated against some other, exclusionary practices Enrique Villegas, a refugee claimant from Mexico, came to Canada in will prevail. 2003 and applied to the Immigration and Refugee Board (IRB) on the To address this issue, re-evaluating the political condition of health is grounds of his sexual orientation. As a homosexual Mexican, he feared a starting point. It is imperative that Canadians situate ourselves within for his life in his home country. His refugee claim was rejected in Canada this problem to uncover our biases and prejudices towards the categoand less than five years later he was murdered after being sent back ries of political subjectivity, agency, and health. We too easily assume “home”. Why did the IRB reject his claim and continue to reject so many that a disability renders someone unable to contribute to society. We others? Many may argue that Canada simply does not have the social assume that someone’s “mental health”, “physical disability” or “chronic and economic infrastructure to accept refugee claimants. We often hear illness” renders the individual lacking in worth. the argument that such persons would put a strain on our system. To A re-formulation of political subjectivity that does not limit citizenthis, I wonder, is the issue here “scarcity of resources” or is it something ship to the healthy and productive must be considered. In contrast, much more invisible, yet equally perverse? Canadian’s lives would be more holistic if we were not so anxious to It can be argued that Canada’s border acts as a screen separating obsess about the unhealthy outsiders at the gates, but rather focus the ‘worthy’ life from the ‘un-worthy.’ In the context of immigration, more closely on what define us, as Canadians. the border distinguishes the life of the ‘healthy’ and ‘productive’ from the ‘unhealthy’, supposedly ‘un-productive’, and consequently, rejected. The healthy and productive are worthy to the population. However, Sarah Wiebe is completing her MA in political science at the University of Victoria on the unhealthy and unproductive, as defined by Canadian immigration biopolitics and immigration. She is grateful to have found UVic’s political science program, standards, remain outside the ‘welcome’ space of the Canadian state. which has challenged her to re-conceptualize the meaning of “politics”. Sarah intends to In screening the unhealthy or disabled immigrant at Canada’s border we pursue a PhD and to make a career of encouraging others to think critically.
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Hospice and Palliative Care in Sub-Saharan Africa “A world where individuals and families facing serious illness, death, and grief will experience the best humankind can offer.” - Vision, National Hospice and Palliative Care Organization, Inc.
By: Chris Klinger
In light of the HIV/AIDS pandemic and a growing increase in the number of tuberculosis (TB) and cancer cases,1,2,3 adequate pain and symptom management are a growing public health concern in sub-Saharan Africa.4 In the region, it is estimated that annually, 4 to 5 million people with HIV/AIDS and 200,000 people with cancer could benefit from holistic and interdisciplinary hospice and palliative care services.5 These services are aimed to alleviate pain and suffering during the end-of-life stages for terminally ill patients while simultaneously equipping family and friends with essential skills needed to achieve this. However, in many developing countries where the majority of populations do not even have basic access to health care in general, mobilizing resources and workers to care for the dying will continue to be a large political obstacle for the provision of palliative care. A Growing Movement for Hospice/Palliative Care in Sub-Saharan Africa Forming the basis of integrated care delivery at the end of life, the World Health Organization (WHO) defines palliative care as an approach that “improves the quality of life of patients and families who face lifethreatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement”. To address the unmet needs of terminally ill patients and their families within the African setting, Dame Cicely Saunders introduced the concept of hospice and palliative care in 1979. Since then, this modern palliative care movement has taken root in South Africa with an emphasis on providing home and community-based services, and education and
380,000 children die of AIDS every year. Join our Stop AIDS in Children campaign at http://www.avert.org/stop- aids-children.php. (Pierre Holtz , Anne-Fay Townsend, / AVERT)
training to family and community caregivers. Such activities have led to the formation of the Hospice Association of South Africa in 1987, now called the Hospice Palliative Care Association of South Africa.8 Presently, around sixty organizations in Africa are serving approximately 48,000 patients who are suffering with HIV/AIDS and cancer. Within the region, the initiative has been spreading to a number of countries. In Zimbabwe, hospice and palliative care has been gaining greater political recognition and integration within the health care system. Additionally, Botswana, Lesotho, Mozambique, Namibia, Swaziland and Zambia, have also made great progress in establishing localized service provision and capacity-building activities for increased hospice and palliative care uptake.8 For instance, Hospice Africa Uganda, founded in 1993,8 along with Nairobi Hospice in Kenya, have both been active in spearheading hospice and palliative care in tandem with national HIV/AIDS and cancer control policies. Capacity-building activities such as knowledge and training dissemination have also been under way in the Democratic Republic of Congo, Ethiopia, Ghana, Cote d’Ivoire and Rwanda, Malawi, Nigeria, Republic of Congo, Tanzania and Sierra Leone.8 This signifies a large movement particularly in the sub-Saharan region, to mobilize workers and support in caring for the terminally sick and dying. In 2004, the African Palliative Care Association (APCA), headquartered in Kampala, Uganda, has been formally established as an umbrella non-profit organization to promote and sustain affordable and culturally appropriate palliative care throughout Africa. Its mission seeks to support the up-scaling of service provision and to increase the availability of (opioid) analgesics for pain management throughout Africa. Despite the current progress of the APCA, barriers to care remain. Political, Economic and Social Barriers to Care Although integration of palliative care services into national policies would facilitate further expansion throughout the developing world,4,11,12 this has only been scarcely achieved.8,15 Consequently, this has resulted in a lack of allocation of public funding and institutional resources and an insufficient reimbursement through health insurance schemes for individuals affected.15 Of particular concern in this regard has also been the limited availability of (opioid) analgesics for effective pain management4,8,11 and the widespread health human resources shortages at the community level.17 Data from the World Health Organization Collaborating Center for Policy and Communications in Cancer Care (2002) indicate huge discrepancies in the availability and per-capita consumption of morphine around the globe; with pain relief in developing countries often further burdened by restrictive drug control and prescription regulations, misconceptions toward drug addiction, and drug-pricing obstacles.4 Foley and colleagues (2003) stress that national drug policies in developing countries need to include legislation and administrative procedures that ensure the proper handling of (opioid) analgesics, including establishing
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the appropriate amount of medications to be imported as well as the procedures for their distribution and prescription. At the community level, another barrier hindering the implementation of palliative care involves the health human resources crisis and insufficient training of physicians and nurses in pain and symptom management techniques.3,8,17,20 As a consequence, health care professionals are often not available to work in community health clinics to provide patients with check-up services or follow-up care.4 Inadequate health service provision is further exacerbated by poor health service utilization. The fear of stigmatization and discrimination at the patient level limits patients from seeking out such health services.4,8 A study by Sepulveda and colleagues (2003) revealed that in Tanzania, 80% of cancer patients and a vast majority of HIV/AIDS patients feared stigmatization in their community and as a result, less than 20% of HIV-infected women who received care in antenatal clinics disclosed their status to their partners. It is therefore highly apparent that amidst progress in providing adequate hospice and palliative care, many macro and micro level barriers still need to be addressed to ensure provision of adequate levels of pain medication, sufficient numbers of health care professionals and ultimately, a nurturing environment that demystifies the disease and promotes a non-stigmatizing milieu for the terminally ill.
lished a widely used guidebook to pain and symptom control for cancer and HIV/AIDS patients. To date, this guidebook, in its 4th edition, has been upscaled within Uganda and other African countries and is referred to as the ‘Blue Book’ across the continent . To support the further development for establishing standards in palliative care, the African Palliative Care Association will be assisting with the implementation of technical assistance and training.13 In line with culturally sensitive program and education strategies that honour local traditions, enhanced program evaluation and palliative care audits are also seen as an important component to advance hospice and palliative care services. This would foster assessments and monitoring of palliative care progress that would illuminate key strategies that would be an effective guide in facilitating health system integration. Home and community-based services thereby are best equipped to deliver culturally sensitive and adequate care based on the notion that what persons with life-threatening diseases need most are “counseling, lots of personal contact and empathy, and a sense of belonging” . Family and community members are encouraged and trained to provide care and support to infected people and their caregivers – actively overcoming stigmatization and discrimination. Supervision and further education empower community health care workers in their tasks and further enhance the referral process.
“pain relief in developing countries often further burdened by restrictive drug control and prescription regulations, misconceptions toward drug addiction, and drug-pricing obstacles” Moving Forward – An Integrated Service Approaches Working within a community health approach, which seeks to address local factors affecting health and well-being, successful hospice and palliative care programs including the South African Integrated Community-Based Home Care Model and Hospice Africa Uganda are both providing culturally sensitive home and community-based hospice and palliative care services. Alongside treatment programs, these services also carry out education and knowledge dissemination, and provide hospice and palliative care services within their national health policy frameworks. Hospice volunteers, family and community caregivers are all an important pillar of service provision.4,12 Yet, there is also a huge potential for traditional healers to become a core part of the palliative care movement; particularly through their traditional and spiritual caregiving and their trusted relationship with the community.3 An example of this was seen in South Africa, where traditional healers have willingly registered and been trained to incorporate palliative care into their spiritual healing. As Harding and Higginson (2005) maintain, palliative care education programs for traditional practitioners can offer “low costs and a community-base, and promote retention and adherence to pain relief medications, all of which offer improved potential for sustainable services”.3 Standardizing the practice of hospice and palliative care Standards of practice to care serve as guidelines and benchmarks for service provision. To date, South Africa and Zimbabwe have adopted formalized standards of practice17 and Hospice Africa Uganda has pub-
An Ethiopian mother worries about the future. They have no more food and famine is looming. (Anna Kari /www. annakari.com)
Funding It is a misconception that advances in therapy and treatment options obviate the need for hospice and palliative care.3 With end-of-life care often excluded from the health care system, specific funding to provide essential palliative care services is currently often limited to a few, mainly external, donor resources. Coordinated action by international funding entities such as the (US) President’s Emergency Plan for AIDS Relief (PEPFAR), The Diana, Princess of Wales Memorial Fund, The Global Fund to Fight AIDS, Tuberculosis and Malaria, etc. (see: Table), other service providers and local government agencies are needed to advance the field and enhance sustainability.15 As much as the current programs and projects provide beacons of hope for the region, speedy expansion remains to be of essence in the important task to alleviate pain and suffering.
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The Future for Hospice and Palliative Care Despite enormous diversity in culture and setting and the persistent barriers to provision of care, the hospice and palliative care movement is spreading across Africa; employing integrated home and communitybased service approaches to counter pain and suffering. Based on the achievement of important milestones such as the ones listed below, further progress can be monitored and fostered: - Formation of a national hospice/palliative care association; - Development of standards of practice/guidelines to care; - Inclusion of hospice/palliative care into the national health care system’s continuum of care; - Availability of adequate pain medications/opioids; and - Acceptance of palliative medicine as a sub-specialty by national medical associations International funders, service providers and national governments ultimately need to co-operate more closely, counter patient stigmatization and discrimination, empower frontline family and community caregivers and challenge limiting regulations regarding the availability of analgesics. Umbrella organizations such as the African Palliative Care Association and the Worldwide Palliative Care Alliance will be essential in this regard. Additionally, international conferences such as the International Conference on the Care of the Terminally Ill (held bi-annually in Montreal) and the International AIDS Conference (hold in Toronto in 2006) provide important venues to spread the word. Ultimately, countries need policies and services that validate that the terminally ill and dying are entitled to effective pain management and end-of-life care in light of plaguing health system limitations that are impacting overall population health.
Table of Funding Agencies* and Websites of Interest African Palliative Care Association (APCA)* African umbrella organization for hospice/palliative care. Its mission is to promote and support affordable and culturally appropriate palliative care throughout the continent. http://www.apca.co.ug Foundation for Hospices in Sub-Saharan Africa (FHSSA)* US-based umbrella organization for hospice/palliative care. FHSSA’s mission is to support organizations in the development and provision of hospice and palliative care initiatives in sub-Saharan Africa. http://www.fhssa.org Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund)* International resource provider in the fight against HIV/AIDS, tuberculosis and malaria. http://www.theglobalfund.org Hospice Africa Uganda (HAU) Hospice/palliative care provider organization in Uganda. http://www.hospiceafrica.or.ug Hospice Palliative Care Association of South Africa (HPCA) South African hospice/palliative care umbrella organization, promoting quality end-of life care through member hospices and partner organizations. http://www.hospicepalliativecaresa.co.za International Narcotics Control Board (INCB) Independent and quasi-judicial control organ for the implementation of the United Nations drug conventions. http://www.incb.org Open Society Institute (OSI)* The Open Society Institute is a private operating and grantmaking foundation in the Soros Foundations Network, aiming to shape public policy to promote democratic governance, human rights, and economic, legal, and social reform. http://www.soros.org President’s Emergency Plan for AIDS Relief (PEPFAR)* US Government international health initiative to combat HIV/AIDS. http://www.pepfar.gov The Diana, Princess of Wales Memorial Fund* Independent grant-giving humanitarian charity fund, continuing the late Princess’ work in the United Kingdom and overseas. http://www.theworkcontinues.org The Worldwide Palliative Care Alliance (WWPCA) International umbrella organization for the advancement of hospice/palliative care around the globe. http://www.wwpca.net
A Father cares for his ill daughter in the Red Cross Hospital in Yirol, Southern Sudan. (Anna Kari / www. annakari.com)
Christopher A. Klinger is a third-year international PhD student in the Department of Health Policy, Management and Evaluation (HPME) and is completing a collaborative program in aging, palliative and supportive care across the life course out of the Institute for Life Course and Aging. With work experience in the non-profit health care sector, his current research focuses on long-term and palliative care policy.
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Global Conversations Balancing Hope in the 21st Century
By Deborah Frolick
n Saturday, November 3, six prominent international humanitarians convened at Convocation Hall at the University of Toronto to a soldout crowd for the Random House symposium ‘Hope in the Balance’. The panel comprised of some of the most recognizable Canadian humanitarian names: Marilyn McHarg, the current Canadian General Director of Medecins sans Frontieres (MSF); Dr. James Orbinski, the former President of MSF who accepted the 1999 Nobel Peace Prize on behalf of his organization, and the co-founder of Dignitas International; Stephanie Nolen, the award-winning Canadian journalist whose recent book about HIV/ AIDS, entitled “28”, has been received with critical acclaim worldwide; Lieutenant-General Romeo Dallaire, the former UNAMIR Force Commander during the Rwandan Genocide; and Stephen Lewis, the former UN special envoy for HIV/AIDS in Africa. Rounding out the panel was the renowned Nigerian writer Chimamanda Ngozi Adichie, who recently won the 2007 Orange Prize for Fiction for her book “Half of a Yellow Sun”, which was set before and during the Biafran war, Nigeria’s civil war from 1967 to 1970. The panel led an impassioned and heated discussion on the concept of hope and the role of humanitarianism in the 21st century. The tone of the discussion was set on how the international community through humanitarianism has been addressing political and economic challenges faced in Africa. While each speaker spoke through their own experiences -whether as a nurse, physician, journalist, story teller, or politician- each addressed many key themes such as African stereotypes, volunteerism, donor fatigue and the brain drain. Reflections on the “Helplessness of Africans”: War, Famine, and Corruption One of the consistent themes that surfaced amongst the majority of the speakers was that of changing the current mainstream representation of Africans as “a population of desperately helpless people who are unable to help themselves” to one that is more empowering. As physician and activist Dr. James Orbinski contended, such views have left an entire continent of perfectly capable individuals reduced to objects of pity. Chimamanda Ngozi Adichie, the renowned Nigerian writer, further reminded the audience that it is important to remember who has the authority to define one’s story. For Africans, their story has been heavily influenced by Hollywood and the mainstream media, who have painted Africa as a helpless continent that must be supported by the international community. Africa is commonly depicted in newspaper stories and films as a war-torn, famished, impoverished and corrupt continent whose only hope of redemption is through Western aid. While it is true that the continent struggles against the aforementioned issues, it is time we start presenting a more balanced story that includes positive aspects of Africa. Rarely are the continent’s beautiful landscapes, up-and-coming fashion designers and musicians, burgeoning entertainment industry, and scientific discoveries reported in the papers or on the big screen. Instead, we are only offered the more unpalatable truths perpetuating the notion that Africans are helpless. Volunteerism: Teach Them How to Fish This has been further exemplified by the increasing amount of peo-
Promotional Poster for “Hope in the Balance” symposium.
ple who want to go abroad to ‘help’ Africa by engaging in volunteerism. Stephanie Nolen, the Globe and Mail’s Africa Bureau Chief, recalls the numerous emails she receives everyday from individuals who want to know what countries they can travel to and which organizations they can volunteer for. While she openly commended these good intentions, she highlighted that people should be aware of the consequences of volunteerism. She explained that it can become highly problematic when jobs that can and should be given to local community members are filled by international volunteers who are usually paying large fees for the opportunity. For instance, the same amount of money that pays for a week of volunteer experience can be used to hire at least two African teachers for one year. It may make more sense for the volunteer to participate in training or building up the capacity of local workers. If aid is offered in this fashion, recipient communities may reap the long-term benefits of skilled local workers, who will provide valuable services on a continuous basis and work to improve sustainable development. Often, volunteers fulfill short-term gaps of skilled workers and do not address the communities’ greater need for sustainable development. As Chimamanda Ngozi Adichie aptly stated, while aid is fundamentally important, it should never seek to create dependency, nor should it undermine local human resources. Rather, it must always respect human dignity. In order to re-address these power imbalances within humanitarianism, there needs to be more reflection on the rights of contributing donor projects of recipient communities added to season the good intentions of humanitarian workers in the 21st century.
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response from NGOs, the military, and politicians in his address. He emDonor Fatigue has Far-Reaching Global Consequences phasized that these organizations must integrate to work cooperatively The international community has on many occasions shown com- and engage in new and innovative ways that exceed any past failed passion for the dignity of humans in crisis. Marilyn McHarg asked the attempts. Without a question, these separate strategies of humanitarian audience to consider the huge outpour of donations that NGOs received assistance that are in play today are failing the people they are meant after the South-East Asian tsunami of 2005. At the time, she posed the to help. For instance, while peace support operations are underway to question to donors asking if she could redirect a portion of the money provide stability in many war-torn countries, more simultaneous efforts to programs in Africa. Less than 1% of these donors allowed for this. Was this because of extensive media attention? For ..while aid is fundamentally important, it should McHarg, this initial outpour indicates the right spirit, but she encourages donors to be selective and informed about where never seek to create dependency, nor should it they decide to channel their aid. Rather than merely tossing undermine local human resources. Rather, it must their funds into the mix, donors must firstly assess the need for such resources while simultaneously evaluating the best always respect human dignity.” conduit for donor aid. Her example prompted an immediate reflection on the choices we make at home in Canada, which can easily are needed to address community development projects. To emphasize be forgotten to have far-reaching global influence and impact. this point, Stephen Lewis pointed to our inability to meet the UN Millennium Development Goals established in 2000. Some of the key targets Canadian Policies and the Brain Drain that have not been met include the goal to eradicate extreme poverty An important dilemma raised is one which Dr. Orbinski calls ‘human and hunger, achieve universal primary education, and combat diseases poaching,’ a phenomenon more commonly known as the ‘brain drain’. such as HIV/AIDS and malaria. This is a process whereby highly qualified doctors and nurses from Africa and other developing regions are enticed to work for health care Global Conversations and the One-Sided Humanitarian Approach systems in North American and European countries. Current Canadian In a sobering opening address, Stephen Lewis referred to the new policies—such as opening 110 more positions for international medical Prime Minister Gordon Brown’s first speech, during which he declared graduates to work in Ontario—can translate into profound impacts on these goals to be “a million miles away”. Lewis framed the problem both Canada’s and the developing nations’ health systems. By open- around powerful institutions and political leaders that have largely esing up more positions for immigrant medical graduates, the Canadian caped scrutiny and liability in prioritizing their “own personal” interests government saves on the costly medical training of Canadian students. over imperative global interests. Humanitarian aid cannot continue to Concurrently, developing countries lose their educational and human be a one-sided approach through which we simply give what we want resource investments made by paying for the education and training of to give. As Chimamanda Ngozi Adichie pointed out, we should engage their own physicians and nurses. These highly trained immigrant work- in a ‘global conversation,’ whereby the recipients of aid are intimately ers are attracted to Canada because of the possibility of higher wages, involved in the decisions that can literally change their lives. better economic security, safety, and opportunities for their families that cannot be found within their native lands. While developing countries Opening Up the Dialogue may benefit from the remittances sent back home from highly skilled The concept of a ‘global conversation’ suggests a new direction for workers-which is the case in Kerala, India and the Philippines - these the humanitarianism movement as we head into 2008. Global conversums of money may be meager in comparison to the benefits accrued sation acknowledges the importance of political engagement at every by Canada. These remittances may be seen as beneficial in the short level through a collective response. As Canadians, we need to be crititerm, but are often not enough to address the long-term goals of devel- cal about our impulse to engage in overseas humanitarian work and opment, which require building up the local capacities of both human become more acute to how we might obstruct the empowerment of and infrastructure resources. people who live there. We need to acknowledge and understand the In countries overwhelmed with health pandemics, this extraction power we have to be humanitarians from within our own country. Canaof valuable human resources not only undermines efforts to improve dians must recognize the opportunities they have to affect these policies healthcare in low-resource settings, but additionally reflects a short- through local political engagement. Few would argue that activism is sightedness of the international community whose workload may be ‘sexy’ or as appealing as flying to war-torn, famine-afflicted, or health doubling from both ends. As international workers hop aboard to help crisis regions. However, redefining how we choose to ‘help’ can be just rebuild health care infrastructure and train health care workers to ad- as powerful-if not more so. It can involve work that is essentially invisdress these shortages, our home country poaches the highly skilled ible because it takes only one person and their laptop, pen and paper, or workers we worked so hard to train. As Canadians, we need to make phone; while such work that excludes the glamorized travel experience this important connection between our own country’s policies and their and largely escapes personal recognition, it that might just be the tradlong-term consequences on other countries. eoff for effective humanitarian action in the 21st century.
Tried, Tested, and Failed: Revisions to Yesterdays Humanitarian Strategies We cannot continue to face today’s challenges with yesterday’s methods, which focus on humanitarian interventions isolated from military efforts. Lieutenant-General Romeo Dallaire advocated a new collective
Deborah Frolick is completing her B.A. in Anthropology and Latin American Studies at the University of Toronto. She is interested in studying social movements at the local level to understand what factors push people to organize. Once she completes her degree she plans to continue studying anthropology in graduate school.
Volume 2 | Issue 1 | Fall 2007
Volume 2 | Issue 1 | Fall 2007
Fear and Empowerment, Juxtaposition Issue 2.1, Fall 2007