Personal Health

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A Mediaplanet Guide to Healthcare Innovation and Patient Advocacy

Personal Health

Dana Vollmer What the Olympian wants you to know about your heart

Find out why’s CEO says this condition is so dangerous Discover the innovative telehealth solution from QT Medical that is changing our approach to heart health Learn how CoNexus Care is treating untreatable cancers Read how clinical trials are getting an upgrade with new tech from PRA Health Sciences


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COVID-19 Increased Diversity in Clinical Trials COVID-19 disrupted life around the world, but it may have also helped shine a bright spotlight on the need for diversity in clinical research — and highlighted some solutions. As COVID-19 emerged, the FDA quickly issued guidance so clinical research could continue, allowing more remote monitoring and decentralized or virtual trials. “This means more patients are able to access clinical research,” explained Christian Rubio, vice president of strategic advancement at Global Genes, a rare disease patient advocacy organization. “They can access telemedicine, virtual trials, and use mobile devices for data capture, for example. For rare disease patients and their caregivers, this can open opportunities for them to participate in clinical research that they may not have otherwise been able to.” As the pandemic lifts, the question becomes: Will the industry revert back to older models? Fortunately, this shift has focused attention more closely on the patients at the center of the research model. There are also more opportunities to develop technology, particularly for data capture, as patients participate remotely via wearable devices or home healthcare providers. “The increased access will give more opportunities to wider populations,” Rubio said. “That could bring about the change we need to increase diversity and inclusion, find cures, and bring hope to more people around the world.” Christian Rubio, Vice President of Strategic Advancement, Global Genes


How One Woman’s Atrial Fibrillation Experience Inspired Her Commitment to Patient Advocacy More than 2.7 million Americans live with atrial fibrillation, known as AFib, an irregular heartbeat. However, many don’t even realize they have the condition until it’s too late. “AFib is the most common unknown condition,” said Melanie Hills, founder and CEO of StopAfib. org. “We need to do something about it. People need to be aware of it.” Symptoms can be different for each patient, but often include palpitations, thumping, or irregular beating. Hills says 1 in 3 people with AFib don’t feel any symptoms and don’t realize they even have the condition. She wants people to get diagnosed and treated before they have a stroke.


She encourages doctors to screen patients most at risk for stroke, including those over 65 who have conditions like high blood pressure or diabetes. Tech may help, too. Wearables like an Apple watch may help consumers monitor their heart rate, so they can get diagnosed and treated early, if needed. Close call In 2003, Hill started having heart problems and had a stent placed. A few months later, she experienced an odd sensation in her chest, her heart was racing, her right leg was cold and white, and her right eye was blurry. “At the emergency room, we discovered that I had had blood clots, and a close call was a stroke,” she said. “And it was due to this

condition called atrial fibrillation, which I had never heard of. That was pretty scary.” The doctor prescribed a blood thinner so she didn’t have a stroke. But the heart episodes continued a couple of times every month. “I never knew when it was going to happen and I couldn’t tie it to any particular thing, because the circumstances were different every single time,” she said. Then in 2005, Hills had a mini maze procedure — a minimally invasive surgical ablation that uses an energy source to scar the tissue. The procedure, which doesn’t require opening the chest, has a shorter recovery time. This is Hill’s 15th year free of AFib. From patient to advocate Hills had learned so much from her AFib journey that she decided she wanted to help others with the condition. In 2007, she started Later that year, she created National Atrial Fibrillation Awareness Month, recognized every September. These days, she’s an international advocate, including working with medical societies to inform them of the patient perspective. She attends a global summit and 25-30 conferences a year. n Kristen Castillo



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struggled and so did the system which used costly resources over and over. “As physicians, we have to be open to use new technologies for the better care of our patients,” she says.

Unlocking the Power of Data to Transform Vascular Patient Care

Cardiovascular diseases are the leading cause of death for nearly 18 million people worldwide annually — and that number continues to grow. Traditionally the focus has been on treating specific blood vessel blockages or heart disorders in these patients — in some cases resulting in invasive open-heart surgery — but that’s changing. Imagine instead if we treated these diseases in a more “whole patient” approach, where we focus on improving overall quality of life instead of fixing a specific problem. This is a near-future possibility by using data and technology to improve diagnosis accuracy, enable more precise decision making in interventions, and accelerate evidence-based post-procedural care. “My mission is to help improve the care continuum for vascular patients and provide a seamless experience,” says Dr. Nick West, chief medical officer and divisional vice president of medical affairs, for the vascular division of Abbott, a global healthcare company.

Insights Abbott was in search of how vascular disease — from risk factors and prevention, to symptoms, diagnosis, and treatments — could be improved. They surveyed over 1,400 patients, referring physicians, and healthcare administrators across nine countries to gain insights and learn how using technology could help improve patient care. Findings from their research which can be read in their white paper, “Beyond Intervention: Personalized vascular care through technological innovation,” show patients are frustrated by care and want doctors they can trust, more time with those doctors, and a personalized approach for their care. Over 90 percent say sharing their personal health information is important for future generations. Over half of doctors reported not having enough time with patients. And while 88 percent of physicians say it’s a priority to have access to patient history, only 30 percent say they can easily access that information.

Meanwhile, 88 percent of administrators named patient satisfaction as highly important to the overall procedure experience, and 55 percent say technology can improve decision making at diagnosis. Better outcomes Data and technology can help unlock improvements in patient care and solve some of these pain points. For example, light-based imaging technology like Abbott’s Optical Coherence Tomography (OCT) enables a cardiologist to look inside the blood vessel to optimize their treatment strategy. Being able to look at the structure of the vessel allows a physician to choose the right tools and then check the result — this imaging technology is better than using a traditional two-dimensional angiogram. “Imagine a future where every imaging procedure can be benchmarked against previous procedures around the world, allowing physicians and their patients to benefit from the learnings from other procedures,” says Dr. West. “We then can provide physicians instantaneous

information on the best treatment strategy.” Closing gaps In addition to optimizing the treatment itself, another challenge is the lack of unified medical records. “How do you get to personalized medicine, if you don’t have those medical records unified?” asks Dr. Natalia Pinilla-Echeverri, an interventional cardiologist at Hamilton Health Sciences/Niagara Health and assistant professor of the Department of Medicine at McMaster University. One of her patients, a young woman under 30, traveled a lot for business and had been admitted four times to different hospitals in two months. The patient had had a minor heart attack but without unified medical records, each visit was like starting over. Finally, Dr. Pinilla-Echeverri used the aforementioned imaging technology to diagnose the patient with a severe blood vessel blockage and treated her accordingly. Without the right diagnosis and documentation of that diagnosis, the patient

Tech success The survey found technology has improved care in many ways including earlier identification of comorbidity risks and greater ability to treat patients correctly from the start, reducing readmissions and additional costs. They also found better patient involvement as patients adopt health devices and wearables, such as smartwatches. Telemedicine, which surged during the COVID-19 pandemic, is another success. Now, it’s mainstream for patients of all ages to have virtual doctor appointments. Looking ahead Data collected now can help patients today and in the future. But there’s work to be done. “Unlocking the power of data can significantly improve procedures and better care for patients,” says Dr. West. “By harnessing deep learning and machine learning algorithms to integrate diverse patient data sources, physician decision-making can be supported with the express aim of enhancing outcomes.” Abbott’s research shows how technology can help doctors deliver better outcomes and create a more connected continuum of care for patients. n Kristen Castillo

Download the white paper: beyondintervention



Changing the Conversation to Prevent Heart Disease and Stroke

Advancing Technology and Hope for Women’s Heart Health According to the National Study of Physician Awareness and Adherence to Cardiovascular Disease Prevention Guidelines, only 8 percent of primary care doctors, 13 percent of gynecologists, and 17 percent of cardiologists were aware heart disease is a greater cause of death in women than in men. Many of those clinicians failed to understand the differences between cardiovascular disease (CD) in men and women. As a result, women’s CD is going undiagnosed and patient-centric care is suffering. While men with cardiovascular disease typically report shortness of breath, chest pain, and tingling and numbness in the extremities, women with CD tend to report more subtle symptoms, like stomach, jaw, neck, and back pain. Women often fail to understand these symptoms could signal CD and delay going to the doctor until it has progressed to a later stage with stronger, more visible symptoms — sometimes to a stage where treatment options are limited. Or, if they do go to the doctor immediately, their doctor may have trouble deciphering their symptoms as heart disease, and their condition may go undiagnosed. As we know, these consequences can accumulate to a fatal point. Still, this state of affairs does not have to be permanent. The first step to reversing this trend is education. Then, healthcare practitioners must act on it. They can empower their patients to speak up when they suspect cardiovascular disease, even if their symptoms are mild, and they help take precautions against it. Perhaps more importantly, they can encourage patients to consider participating in medical device clinical trials. The more women we have participate in CD medical device clinical trials, the better new medical innovations in the pipeline will serve them. Tara Federici, Vice President for Technology and Regulatory Affairs, Advanced Medical Technology Association


During the ongoing COVID19 pandemic, millions of Americans are still at risk for heart disease and stroke, the first and fifth leading causes of death in the United States, respectively. Cardiovascular events are so common that Americans seem to accept them as almost inevitable, and the national conversation focuses on sophisticated medical interventions. Yet, in 2020, we know that up to 80 percent of these events are preventable. The conversation needs to change. While heart disease and stroke can affect anyone, some groups are more likely to have conditions that increase their risk for these diseases. These are also some of the communities that have been hit hardest by COVID-19, such as African Americans, Hispanics, and American Indians. Social determinants of health significantly contribute to these numbers, and interventions must focus on the physical, food, and economic environments where we live, learn, work, and play. That’s why prevention and partnerships among healthcare, public health, and community organizations are essential. America’s cardiovascular crisis Recent data from the Centers for


Disease Control and Prevention (CDC) highlight a public health crisis: in two-thirds of U.S. counties, death rates from both heart attacks and strokes increased in adults ages 35 to 64 (2010-2017). An estimated 1.6 million heart attacks and strokes occur each year in the United States. Cardiovascular disease is responsible for more than 870,000 deaths per year, is the greatest contributor to racial disparities in life expectancy, and costs the country hundreds of billions of dollars annually. Changing the conversation To address these concerning trends, we must start by recognizing the magnitude of this public health problem, changing the conversation, and prioritizing the use of proven strategies for cardiovascular disease prevention. We are missing more than 200 million opportunities for cardiovascular disease prevention. Controlling high blood pressure will have the greatest impact on rates of heart attacks, strokes, and other cardiovascular events. This is because it affects 108 million Americans, only 24 percent of whom have their condition under control. COVID-19 makes some of these issues even more compli-

cated, but also underscores their importance. Serious heart disease is among the conditions that increases the risk of severe illness from COVID-19. COVID-19 should not be a reason to delay or defer other needed care. The Million Hearts Initiative® Million Hearts®2022 is a national initiative co-led by the CDC and the Centers for Medicare & Medicaid Services with the ambitious, but achievable, goal of preventing at least 1 million heart attacks and strokes by 2022. Its three pillars are keeping people healthy, optimizing care, and focusing on priority populations. Million Hearts® is one of the CDC’s six Winnable Battles; public health priorities for which the CDC and its partners can make significant progress in a relatively short time. Millions of Americans have suffered a heart attack or stroke, and millions more are at risk of these devastating events. Each event prevented is an important step forward, one in a million, as we look toward a future of better cardiovascular health and greater focus on cardiovascular prevention. n Laurence Sperling, M.D., Executive Director, Million Hearts®, Division for Heart Disease and Stroke Prevention, Centers for Disease Control and Prevention (CDC)

A Simple Training Course Could Save Thousands


Dana Vollmer Knows How Life-Changing a Heart Arrhythmia Can Be

Olympic gold-medalist Dana Vollmer was diagnosed with a heart arrhythmia when she was just 14, but she says by listening to her doctors, she was able to continue her journey to the top. There’s no good time to be diagnosed with a heart arrhythmia, but getting this news while training for the Olympics has to be among the worst. This is exactly what happened to swimmer Dana Vollmer, who nevertheless went on to become one of the most goldmedaled United States Olympians of all time. Vollmer was diagnosed at age 14, when she was already working toward competing in the Olympic games. “My whole life was swimming and athletics. If I wasn’t in the pool, I was playing volleyball or basketball, and it seemed like everything I knew could be taken away in an instant,” Vollmer said. “I had never felt that out of control of what was happening.” An arrhythmia is a problem with the heart rate, in which the heart beats either too quickly or too slowly. Vollmer says her racing heartbeat was corrected with surgery, but her doctors also discovered the appearance of Long QT rhythms, a condition which can suddenly

cause fast and chaotic heartbeats resulting in fainting or in extreme cases even death. “My family discussed everything we could from an implanted defibrillator to serious lifestyle changes. Luckily for me, the patterns were not confirmed as Long QT Syndrome, but as random long QT-type patterns. Doctors cleared me to continue to train and compete as long as I kept a defibrillator unit next to me at all times,” Vollmer said. In order to maintain good heart health, Vollmer urged everyone to keep on top of their own numbers; know the signs of heart attack and stroke, which are different for men and women; and continue to eat healthy and exercise. Vollmer’s arrhythmia didn’t stop her from becoming an Olympic gold medalist, but it was still something she and her family had to consider. To anyone recently diagnosed with a heart abnormality, Vollmer said it may mean you have to change your life path. But that’s OK. “Your dream may have to change depending on your diagnosis. It’s not always about pushing through the obstacles, sometimes we can find a more fulfilling enriching path in another direction.” n

About 90 percent of people who experience sudden cardiac arrest (SCA) outside of the hospital die. However, if more people underwent a simple and straightforward training — cardiopulmonary resuscitation, or CPR — more lives could be saved. “CPR training involves hands-on learning of life-saving skills on an actual training manikin,” said Stephanie Clark, Director of North American Sales at PRESTAN Products. “In addition to the skills learned,” Clark added, “it is crucial that confidence is instilled in students learning CPR during the training, so when one walks away with the knowledge and skills to perform CPR they don’t hesitate or second-guess themselves for one second when and if the need arises to aid in saving someone’s life.” There’s a common misconception that SCA affects only the elderly, and yet the truth is SCA impacts more than 7,000 youth under the age of 18 each year, and often is the first sign of a heart issue. “It is imperative that as many people as possible in the general public know how to administer CPR,” Clark said, “to help save the lives of a loved one, a friend, a neighbor, and even a complete stranger when and if the need arises.” To learn more about CPR training courses, visit the American Heart Association or the American Red Cross. This has been paid for by PRESTAN Products. Melinda Carter

Lynne Daggett



Improving Lifelong Care for Adults With Congenital Heart Disease For more than two decades, the Adult Congenital Heart Association (ACHA) has been the leader in raising awareness of congenital heart disease (CHD) and the specialty medical care needs of people living with CHD throughout their adult lives. Starting as a volunteer-led organization offering an opportunity for people with CHD to meet someone with the same heart defect, we have grown to become the go-to resource for the nearly 2 million adults living with CHD, along with their healthcare providers. The Accreditation Program — the only of its kind — was designed and developed by healthcare providers and adults living with CHD to meet the needs of the ACHD patient population, and improve the quality of care delivered throughout the United States. We have elevated the quality of CHD medical care with more than 30 accredited centers nationwide, and that number grows annually. Unfortunately, despite the recent growth of certified ACHD healthcare providers and ACHD medical centers in the United States, only a fraction of patients are being seen in these specialized centers — data reported in our ACHD Program Directory shows that fewer than 10 percent are being seen by a board-certified ACHD healthcare provider. We attribute this to a lack of education and awareness for the need of lifelong care and monitoring. It is essential for adults with CHD to recognize that their condition requires care throughout their life, following recommended guidelines (which we spell out on our website). ACHA offers the tools and education that adults with CHD need, as well as a network of community support. To join and support the Adult Congenital Heart Association, visit Mark Roeder, President and CEO, Adult Congenital Heart Association



Improving Heart Health Right at Home A new focus on innovative telemedicine solutions is removing the obstacles to better cardiac care for all.


ne person dies from cardiovascular disease every 37 seconds in the United States. The most effective tests for the heart is the 12-lead electrocardiogram (ECG). “Up until recently, a 12-lead ECG was only available in hospitals and doctors’ offices,” said Ruey-Kang Chang, M.D., professor of pediatrics at UCLA and CEO of QT Medical, a medical devices company. Empowering patients One solution is QT Medical’s PCA 500, an FDA-approved 12-lead ECG intended for personal use.

“We have created a system that brings the ECG to patients to use at home,” Dr. Chang said. “It empowers the patient to take control of their heart health.” With Xpress ECG, patients can perform ECGs on demand. “When a doctor orders an ECG, we ship it to the patient and they can do this test at home. Two minutes later, the results appear on the doctor’s phone,” Dr. Chang said. The benefits of an at-home ECG solution go beyond avoiding unnecessary and risky travel, and lower costs (in-hospital ECGs can cost hundreds of dollars). ECGs performed by different technicians in different loca-

tions can introduce variables in terms of lead placement, and traveling to a lab or hospital can be stressful, making the data generated from an at-home ECG potentially more consistent, which means more accurate diagnoses. Dr. Chang thinks the new normal will be one where patients are empowered. “Even after the pandemic is over,” he said, “we’ll need an adequate way to take care of diseases and conditions at home — and we are leading the way to make this happen.” n This has been paid for by QT Medical. Jeff Somers


Brooke Burke Takes Charge of Her Endocrine Health

Actress, fitness expert, and podcast host Brooke Burke encourages women to be more aware of their hormones in order to live a better life.


hen Brooke Burke underwent a complete thyroidectomy in 2012, she’d already been dealing with an ongoing challenge. “I was diagnosed with Hashimoto’s disease after the birth of my second daughter,” explained the former “Dancing With the Stars” co-host. “I took Synthroid regularly for about a decade.” Hashimoto’s disease, the most common cause of hypothyroidism, primarily affects women in their 40s to 60s. But Burke felt something more might be going on and was ultimately diagnosed with thyroid cancer as part of a routine physical. Losing energy “I had no symptoms, which is very common,” Burke said. “I was always

tuned into my own body, and aware of the different cycles a woman goes through as far as energy. I knew something was wrong.” Burke continued, “My thyroid was working too hard or not at all, but I couldn’t get the right diagnosis until the bloodwork showed that my thyroid just wasn’t functioning. It was an interesting period of time in my life, as far as having endless energy and then my thyroid dying and having none. “Low energy leads to a lot of other things, such as depression, fatigue, weight gain, and hair loss. I think most young women aren’t aware of how much hormones affect us.” Taking charge As a mother of four, Burke knows the importance of taking care of herself. “I always advocate for women’s health. There are simple things we

can do to better understand our bodies, like having yearly checkups,” she said. “The better we take care of our bodies, the more ability we have to combat issues. Being a responsible, committed patient is the most important thing.” Burke says in addition to managing her health through screenings and doctor visits, there are a lot of preventative measures she takes to ensure her body continues functioning normally. “Now in my late 40s, I have more compassion for myself,” said Burke, who believes understanding the endocrine system and the role hormones play can help females manipulate the challenges they face each month. “We can get more rest, eat certain foods and work out differently, and have a more positive inner dialogue.” n


Why Rare Stories Matter There are over 35 million people in the United States living with a rare disease and each has a story to tell. Horizon Therapeutics CEO, Tim Walbert, is one of them. Like many rare disease patients, Tim waited nine years and worked with more than 100 physicians before getting an accurate diagnosis. Motivated by his personal journey, Tim started Horizon, a company committed to developing breakthrough medicines for patients who have rare and rheumatic diseases. Our work is as personal to him as it is to many at Horizon, including myself. My son lives with a rare genetic disorder and every day I am driven to make a bigger impact as a parent, caregiver, scientist, and leader on the research and development team. Our approach to R&D involves a unique blend of scientific rigor and compassion for patients to improve the lives of the patients we serve. It’s also why we created the #RAREis program, to further elevate the unique voices, faces, and experiences of people living with rare diseases. Through close partnerships, our programs empower people living with rare diseases to share their stories through song, photos, videos, and blog posts. These stories have inspired the creation of new grants for rare children awaiting adoption, driven the development of resources to help with guardianship and transitions, and established a scholarship fund to support the pursuit of life enrichment activities for adults living with rare diseases. Melanie Gloria, Senior Vice President, Development Operations, Horizon Therapeutics

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This College Football Player Is Inspiring Other Rare Disease Patients

COVID-19 Has Changed the Way Rare Disease Patients Receive Care Amid concerns over COVID-19 exposure, many rare disease patients have faced challenges in receiving the care they need over the past few months. Pamela K. Gavin, chief strategy officer of the National Organization for Rare Disorders (NORD), explains how healthcare has adapted to deliver this care during a pandemic.

Diagnosed with aplastic anemia during his sophomore year of high school, Antwan Dixon refused to give up on his passion. Now playing on the Kent State University football team, he uses his platform to inspire other people with rare diseases.

What are some challenges in treating rare diseases as a result of the pandemic? The National Organization for Rare Disorders (NORD®) has found through two recent surveys and from conversations with the community that rare disease patients have been impacted by canceled medical appointments, diminished access to both personal protective equipment and medications, and financial instability, including job loss. On the research front, many clinical trials have been canceled or postponed indefinitely, creating new, unexpected challenges in the progress toward new treatment options for the more than 7,000 rare diseases, over 90 percent of which do not have an FDA-approved treatment.

During his sophomore year of high school, Antwan Dixon began feeling fatigue so extreme that walking up and down stairs was a challenge, nevermind keeping up at track practice. When he fainted after moving his mom’s car out of the driveway, he went to the doctor and discovered the reason for his frequent dizzy spells and vomiting: aplastic anemia, a rare disease that interferes with the body’s natural ability to produce blood cells. Despite the life-threatening disease, seven years later, Dixon is using his diagnosis to inspire and empower others living with rare health conditions. “It’s put me in a lot of different situations, and I’ve been able to spread my story around a lot of different places — especially the

How have telehealth services changed as a result of the pandemic? Fortunately, both federal and state governments temporarily but rapidly expanded the types of patients and providers eligible to utilize and be reimbursed for telehealth services. Though many challenges remain, the expansion of telehealth services has the potential to create long-lasting improvements for rare disease patients.

people who are playing sports and have aplastic anemia or another rare disease,” said Dixon, 23, a wide receiver for the Kent State Golden Flashes. Beyond football Though he is enjoying the game of football now, he hopes to become a motivational speaker in the future. In fact, he’s already working with Uplifting Athletes, an organization that strives to uplift the rare disease community through sports. When Dixon was diagnosed with aplastic anemia — a condition that, when untreated, can lead to heart rhythm problems and potentially heart failure — he leaned on his family for motivation. He describes his mom’s support as unwavering as he underwent initial treatment. “My mom was always there when she could [be]. There was probably one day she missed in the past seven years that I was in the hospital,” Dixon said. “My dad was working the majority of the time, but was there when he could be. They motivated me to keep going.”

Though he’s never met him, Dixon said Pittsburgh Steelers running back and cancer survivor James Conner was a source of inspiration. “I’ve never been able to talk to [Conner], but I’ve read the stories and seen he went through similar things,” Dixon said. One yard at a time Dixon has no plans to leave football yet, saying he wants to play the game as long as he possibly can. However, he’s looking forward to the day he can help others in similar situations to his own. He encouraged other people living with rare diseases to shift their perspective and find the strength to persevere. “You’re different. Embrace it — don’t think of it as a negative,” Dixon said. “And keep pushing forward, because at the end of the day, someone’s going to be looking up to you. I know it’s a minor accomplishment, but it’s a big accomplishment at the end of the day.” n Melinda Carter

- Emppwering Rare Disease Paঞents - Perssnalized Drug Disccvery Prrjects start yyurs at 8



The True Cost of Ineffective Clinical Trials Clinical trials use an archaic model that isn’t patient-focused. But new technologies aim to improve the situation.


he system of designing and implementing clinical trials hasn’t changed much over the decades — which may be why 1 in 5 clinical trials fail due to insufficient patient enrollment, and fewer than 5 percent of adult patients take part in clinical trials at all. “The Federal Food, Drug, and Cosmetic Act of 1938 really guides the whole industry,” notes Scott Schliebner, vice president of scientific affairs at PRA Health Sciences. “And our model hasn’t evolved much since. Clinical trials are taking longer to develop new medicines. That creates a snowball effect that affects overall healthcare costs.”

Not patient-focused One of the main problems with the current state of affairs is the burden they place on patients. “The pharma-biotech space is very risk-averse,” Schliebner says, “and hasn’t adopted a customer-focused approach. We cannot move forward without patients — we’re 100 percent dependent on them. Yet, they are kind of an afterthought in how we design these trials.” This is especially true for rare diseases and disorders — something Luke Rosen knows firsthand. After his daughter Susannah was diagnosed with KIF1A Associated Neurological Disorder (KAND), the actor and

activist founded KIF1A.ORG with his wife, Sally, in order to accelerate research into treatments for the disease. “We have been involved in clinical research,” Rosen notes, “and it has been so difficult. Susannah sometimes has upwards of 100 seizures a day. She has a service dog and a wheelchair — when we travel, we travel big. It takes an hour to get out of the house, and fatigue is a trigger for a lot of the difficulty she has medically.” Rosen thinks that a patient-focused attitude should extend to the goals of a trial as well. “Understanding and identifying what a meaningful endpoint would be is crucial,” he says. “Getting a

therapeutic that would allow her to run a marathon would be awesome, but just getting her five more steps would be life-changing.” New tools The technology that would solve some of these problems already exists and is finally making inroads into the clinical trial space, thanks in part to the COVID-19 pandemic. “People are saying ‘That technology that we were hesitant to really jump on board with? Well, we kind of need that right now,’” Schliebner notes. One example is PRA Health Science’s mobile health platform. Patients can download an app, connect with a clinical trial, review study

information, and even sign a consent form electronically. A secure telemedicine component then allows patients to interact with the research investigator or physician. “That can really eliminate travel,” notes Schliebner. “Beyond that, it gets really interesting. With Bluetooth, we’re now able to leverage all kinds of connected devices to measure lung capacity, or activity, or glucose and blood sugar levels.” That means improved data for the trial, as well as higher recruitment rates and fewer dropouts due to reduced disruption and costs facing patients. Rosen endorses tools like this. “I think that certainly if there is a visit that could be remote, that would be wonderful,” he says. “Because it’s not one individual participating in a clinical trial — it’s a family participating in a clinical trial. It’s not a clinical trial for just Susannah. It’s a clinical trial that my wife, myself, and my eightyear-old son have to participate in.” Schliebner stresses that technology is just a tool. “Tech can be a great part of the solution. But it’s more important to change our mindset to focus on patients, saying, ‘How can we make this a little bit easier so that it fits into patients’ lives?’” n Jeff Somers

PRA Health Sciences is a global healthcare intelligence partner, consistently ranked among the top CROs and best employers worldwide. For more information, visit



The Case for Independent Cancer Care Advisors A newly diagnosed cancer patient soon recognizes how little help there is in navigating the healthcare maze. Too many cancer patients experience institutional delays in scheduling and confusing insurance claims and billing errors, and healthcare providers struggle to stay ahead of the rapidly advancing field of cancer treatments while managing current caseloads. In response, the medical world has welcomed specialized patient advocates. Independent cancer care advisors or advocates promote a strong patient-provider relationship to ensure the patient receives the best care possible to improve survival. From the time of engagement, these advocates work swiftly to formulate, prioritize, and implement a flexible strategy to bridge healthcare system silos while addressing a patient’s individualized needs at any point of the cancer care journey. And this is just one specialty role among the growing number of private health advocates, whose expertise is helping save patients money and, sometimes, lives. This has been paid for by Beacon Advocates. Lea Ann Biafora, CEO & Founder, Beacon Advocates


Personalized Medicine and the Future of Cancer Care

Researchers are continuing to study how genomic sequencing can lead to improved cancer treatments and prevention.


or a little more than 15 years, genomic sequencing technologies and other cutting-edge tools have been delivering unprecedented insights about the molecular activities of cancerous cells. Most significantly, we have learned that every patient’s cancer — like every person — is genetically unique. For this reason, no single treatment will work for every cancer patient. Guided by this discovery, some physicians have begun to embrace a new way of treating cancer patients called personalized medicine. Also referred to as precision medicine, this evolving field involves the use of


diagnostic tests to determine which medical treatments will work best for each patient. By combining the data from those tests with an individual’s medical history, circumstances, and values, healthcare providers can develop targeted approaches to healthcare. The diagnostic tests underpinning personalized medicine can sometimes reveal genetic mutations, present at birth, that make some patients more susceptible to cancer than others. These tests may also uncover molecular characteristics, present on cancerous cells, that can be targeted by available therapies. For some patients, targeted therapies are

safer and more effective than traditional cancer treatments. Health systems are still working on developing and adopting the updated policies and procedures that will be necessary to facilitate the widespread utilization of personalized medicine, which differs significantly from the one-size-fitsall approaches to healthcare that have dominated medicine for most of human history. For this reason, many proponents for personalized medicine encourage patients to educate themselves about the field and discuss it with their physicians. n Edward Abrahams, President, Personalized Medicine Coalition


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Treating Rare Diseases Is More Complicated During a Pandemic Rare disease patients and their families are encountering challenges due to the COVID-19 pandemic, in addition to the obstacles to diagnosis and treatment they regularly face.


n the United States, over 25 million patients and families affected by rare diseases are currently managing a new set of challenges brought on by the novel coronavirus, COVID-19. Six months into the public health crisis, 92 percent of people with rare diseases remain affected and 94 percent are worried about COVID-19. In April, 74 per-

cent who responded said they had a medical appointment canceled, and that number rose to 79 percent in June. Eighty-eight percent of those offered telemedicine accepted it and 92 percent of those who accepted said it was a positive experience. Amidst the disruptions to traditional modes of care, telemedicine has emerged as a bright spot for many people with rare diseases to safely

Telemedicine has emerged as a bright spot for many people with rare diseases.

and confidently access medical care without risking exposure to COVID-19. Since the start of the outbreak, access to telemedicine has increased, with 83 percent of surveyed respondents reporting they had been offered a telemedicine visit in June, compared to 59 percent in April. As part of its response to the evolving COVID-19 situation, NORD’s policy team is working to protect access to

necessary medical treatments including telemedicine, home infusions, and medication refills, and is advocating to the Department of Health and Human Services, and state health departments to ensure rare disease patients are not discriminated against during COVID-19 care and triaging. n Vanessa Boulanger, M.Sc., Director of Research Programs, National Organization for Rare Disorders (NORD)


Why Patient Voices Make All the Difference in Rare Diseases Traditionally the biopharmaceutical industry has been the key stakeholder in researching treatments for people living with rare diseases. Now there’s a patient-centric approach. “When you embed the patient voice into programs, you’re going to not only save money, but you’re also going to make it better for the patient,” says Raymond Huml, VP of Medical Affairs at Syneos Health, a biopharmaceutical solutions organization. “It’s a win-win for both sides of the equation.” 12

Syneos Health is committed to working with key stakeholders to accelerate clinical research for rare diseases. Their Rare Disease Consortium, a collaborative and independent multifunctional team of experts, shares best practices in all aspects of development for new therapies for rare diseases. In the past five years, the consortium has conducted 350 projects in rare diseases including real-world evidence projects like registries and non-interventional studies. A quarter of their research experience is in the pediatric population.


Urgency Huml, who has over 30 years in clinical and biopharmaceutical industries, knows rare diseases well — his daughter, 27, and his son, 22, both have a form of muscular dystrophy. He brings both the professional and patient perspective to his work. For example, he understands how important it is to the rare disease community to maximize time. He and his team at Syneos developed “BAM,” a biopharmaceutical accelerator model, a trusted process for speeding up drug development.

“We realized that in order to bring things to the patient, we have to have a sense of urgency,” says Huml. “I can bring that to the table because I have to live with it every day.” He continues, “If we can save a patient a burden, if we can help identify an extra rare disease patient for a clinical trial, if we can enroll the trial faster, that means we can get these drugs to kids quicker and to the parents.”

diseases individually, Huml takes a big-picture approach and looks for commonalities, including potential for gene therapies, similar pros and cons of going into trials and challenges for caregivers. He says the future is promising: “We need to focus on the positives and that there is potential for a cure.” n

Promising future While it can be daunting to look at all of the 7,000 rare

Discover more at

Kristen Castillo


Solving Rare Disease Challenges With a Patient-Focused Approach and Advanced Analytics An estimated 25 to 30 million Americans have a rare disease, conditions that affect fewer than 200,000 people. Historically, it’s been challenging to research and develop treatments for these diseases but that’s changing.

Now experts are better able to collect and analyze patient-specific data. “As the medical field looks at more narrowly defined patient populations,” says Glen de Vries, Medidata’s co-CEO and co-founder, “we need to develop better ways to measure as much about patients as possible.” For over 20 years, Medidata, a Dassault Systèmes company, the most-used platform for clinical trials around the world, has powered tens of thousands of clinical trials, with millions of patients, and billions of patient records. Clinically meaningful results Patient medical data used to be things like blood pressure and heart rate, but standard data sets aren’t enough anymore. Now, it also includes data derived from medical imaging and wearable devices. Rapid advancements in health technology have resulted in high volumes of data from multiple sources, including biological information known as “omic” data, including genomics and proteomics data. Medidata is focused on capturing and analyzing that specialized data into their cloud-based platform, allowing

for a more comprehensive look at rare disease patients. “We’re in an exciting time of precision medicine and personalized medicine where the integration of specialized data, especially in rare diseases with high unmet clinical need, presents an incredible opportunity for patients, providers, and researchers,” says Sheila Diamond, MS, CGC, a board-certified genetic counselor who leads scientific business development at Acorn AI, a Medidata company. “Translating these data into clinically meaningful results will provide new hope to patients.” Experts like Diamond and her team are demonstrating how these health technologies can help guide clinical outcomes for patients. One of Acorn AI’s research collaborators, David Fajgenbaum, M.D., is the co-founder and executive director of the Castleman Disease Collaborative Network (CDCN). Castleman disease is a rare, life-threatening inflammatory disorder in which the immune system attacks and shuts down the body’s vital organs. Only 35 percent of Castleman disease patients respond to its FDA-approved drug. Medidata worked with the CDCN to perform a large omic study and identified a subgroup of patients showing a 3X higher response rate than other patients, results that will help clinicians better identify treatment options for their patients. “We are transitioning to a new era of therapeutic innovation where we

can detect diseases earlier and bring new treatments to patients with far more precision. Technology and data science are accelerating this transition” says Sastry Chilukuri, president of Acorn AI and EVP of Medidata. Overcoming challenges Two of the big challenges of working on rare diseases have been finding affected patients and engaging them in clinical trials. “Giving patients the ability to be active, engaged participants in their care and in their clinical trial journey is so important,” says Alicia Staley, the senior director of patient engagement for mHealth at Medidata. Technology is helping. For example, while patient communities are often geographically dispersed, there are increasingly more opportunities to participate virtually in clinical trials. Continuing to improve technology and expanding access for more patients to participate in trials is a priority. Staley, a three-time cancer survivor and advocate for improving patient access to clinical trials interfaces between the patient communities and Medidata’s patient-centric solutions. Staley brings the patient perspective as part of Medidata’s product design and development team. “Medidata is increasingly providing patients the ability to participate in clinical research, on their terms, in ways the industry hasn’t really experienced before.” Providing the opportunities to participate in clinical

research benefits not only the patient, but the entire ecosystem of care. Patient-focused Helping patients with rare diseases will be a combination of biological science and digital technologies, which will be the basis for better drugs, and better medical devices. All of the stakeholders, including life science researchers and partners, as well as doctors and patient liaisons, are coming together in service of the patient. De Vries, author of “The Patient Equation,” is excited about the future of therapies for treating rare diseases because they’ll be both for individuals and populations. “We need to think in more than one dimension, more than one disease at a time,” he says. “Collecting massive amounts of data can lead to the identification of new patterns, undiscovered relationships, and new treatments.” n Kristen Castillo

For more about Medidata’s work, visit en/rare-disease/



Cancer Care Can Teach Us About Treating COVID-19

How I Learned the Power of My Voice in Getting Better Care It wasn’t until I got a cancer diagnosis myself that I learned how to use my voice to ask for help I needed and advocate for my own care and treatment.

Healthcare providers and patients with COVID-19 can learn much about addressing racial disparities, access to clinical trials, and the importance of prevention from oncology and cancer care teams who’ve seen these issues before.

I thought, because I was a patient insight researcher, I was well equipped to navigate cancer. But I discovered that I didn’t know how to use my voice. While everyone experiences cancer in a different way, having resources available to you for support, education, and eventually empowerment, are so important. Sometimes we get so caught up in getting through cancer that we forget about living. Having access to information is also paramount. Look to your clinical care team for facts about your cancer and fill in the gaps with other resources like virtual cancer events, articles, and bloggers that you trust. While doctors may know about your cancer, you are the expert of your own experience. By sharing your story, you are providing resources to others. Your experience is also extremely valuable in the formation of new treatments. Consider lending your voice to patient experience research. Not only will you have the opportunity to be heard, but you will be helping to improve quality of life and health outcomes for others.


hose of us who practice in oncology understand that patients with cancer faced many of the same fears we all face now, long before there was COVID19. Fortunately, cancer care teams who have faced similar challenges before are rapidly adapting to meet this crisis and are already learning from this experience. Disproportionate impact Like COVID-19, cancer affects minority and underserved patients disproportionately. Black Americans, Latinx, and Native Americans of all ages are contracting, being hospitalized due to, and dying from COVID19 at higher rates than whites. Unfortunately, similar racial disparities exist for many cancers, including lung, breast, and prostate. Like cancer, COVID-

Dave Fuehrer, CEO, GRYT Health




19 has also had a devastating impact on older adults, and we need to do more to protect and treat this vulnerable patient population. Bottom line: we need to understand which patients are most likely to be affected, what happens when they are affected, and how to make them better. Accessing the best treatments Participation on a clinical trial remains the gold standard of care. Whether patients have COVID-19 or cancer (or both), they receive the best possible care when enrolled on a clinical trial. Yet far too few patients, especially racial, ethnic, and other minorities, are able to participate in these ground-breaking research opportunities. If you or a loved one is diagnosed with COVID-19 or cancer, don’t wait for your physician to

suggest a clinical trial. Instead, ask if and where one is available. Prevention is key Similar to our approach during the pandemic, prevention is the best defense against both diseases. If you have symptoms or have been exposed, get tested for COVID-19. Get your mammograms and colonoscopies. For those with cancer, keep up with your treatments and follow-up visits. Early diagnosis, early treatment, and evidence-based cancer therapies can save your life. We do not yet understand the full impact of the pandemic or how long it will last, but we do know that our healthcare teams remain dedicated to providing life-saving treatment and support. And we all need support. n Randall A. Oyer, MD, President, Association of Community Cancer Centers

Empower yourself through

connection, education and advocacy.




Now Enrolling: LN-145, TIL Immunotherapy for the Treatment of Patients with Recurrent, Metastatic, or Persistent Cervical Cancer Investigational

YOU OR SOMEONE YOU KNOW MAY QUALIFY IF INITIAL CRITERIA ARE MET Diagnosed with of Recurrent, Metastatic, OR Persistent Cervical Cancer No prior treatment other than chemoradiation or surgery for loco-regional cancer, OR disease progression during or following treatment with a PD-1/PD-L1 immune checkpoint inhibitor Tumor available for surgical resection (1.5cm) for TIL generation At least 18 years old

TO LEARN ABOUT THE TRIAL Call 1–866–565–4410 (press option 3) Email or, Visit FULL ELIGIBILITY DETAILS AT CLINICALTRIALS.GOV (Search: NCT03108495) TIL Therapy is an investigational therapy and has not been approved for any indication by the Food and Drug Administration (FDA) or any other regulatory agency. The safety and efficacy of this therapy has not been determined.

ECOG PS 0-1 If these key eligibility criteria are met, you may be able to participate in this clinical study. There are additional criteria that can only be assessed by a study physician. © 2020 Iovance Biotherapeutics, Inc.


Telehealth Is Changing the Landscape of Genetic Testing Genetic testing can be daunting. There’s a lot of information out there and it can be a formidable challenge to navigate the process alone. But testing for cancer genetics can provide insights that significantly impact treatment and outcome. A lack of resources Genetic counseling, which provides guidance throughout this process, has become standard of care, but in many places there is fewer than one genetic counselor per 100,000 people. Patients may not have access to important information on how testing will affect their treatment or what it will cost. If a healthcare provider does not have appropriate training in genetics, they may select the wrong test, draw the wrong conclusion from a result, or fail to seek testing at all. The good news A silver lining to the current pandemic, however, has been that many local and state governments as well as insurance companies have modified their policies to improve access to telehealth services. This has led to improved reimbursement, access to these necessary services, and a surge in providers offering telehealth services. Genetics has been no different. This has been paid for by Clover Genetics. Andrew McCarty, MS, CGC, Genetic Counselor and Founder, Clover Genetics



Genetic Testing May Have Saved This Woman’s Life — and Her Family’s Lives Too One patient’s story illustrates how personalized medicine can lead to not just better cancer treatments, but also to better cancer prevention.


hen Christina Lewis started dating Zach Haywood, little did she know that the butterflies in her stomach were something more than her feelings for Haywood. After three months of dating, Lewis was diagnosed with rectal cancer. At first, the gastroenterologist thought Lewis had colitis or Crohn’s disease. But after a large tumor blocked her colonoscopy, Lewis was sent to oncologist Manish Bhandari, M.D., at The Christ Hospital Health Network. She was diagnosed with stage 3 rectal cancer at age 34, which is young since most people with colorectal cancers are over age 50. Bhandari learned that Lewis’ father died of a rare skin cancer in his early 40s. Several members of her father’s family also had cancer. Because of Lewis’ age and multiple cancers in her father’s family, Bhandari suggested a genetic test that might iden-

tify the genes driving cancer in Lewis’ body. The test would indicate whether Lewis had Lynch syndrome, a genetic predisposition that makes some people more likely to develop certain forms of cancer. By seeking to understand the biological characteristics of Lewis’ body that may have been contributing to her disease, Bhandari was employing a cutting-edge approach to healthcare called personalized, or precision, medicine. Personalized medicine is an evolving field in which doctors use diagnostic tests to identify specific biological markers, often genetic, that help determine the medical treatments and procedures that will work best for a specific patient. Lewis, for example, tested positive for Muir-Torre syndrome, a form of Lynch syndrome that is associated with internal cancers. The diagnosis explained the cancers in Lewis’ father’s family. It would also guide her follow-up care, because having Muir-Torre

syndrome increases a patient’s risk of many types of cancer, including breast cancer, liver cancer, and other gastrointestinal cancers. After the tumor was removed, Lewis was given the FOLFIRI chemotherapy regimen. She has been cancer-free for six years, and the discovery of her Lynch syndrome prompted follow-up testing for several of her family members, who now have opportunities to pursue more proactive prevention plans. “The fact that Dr. Bhandari suspected that the cancers were all connected has literally saved my life, my sister’s life, and very likely my young nephew’s life,” she says. “I spend each day of my bonus time living the life that I choose, and I am now married to Zach, my best friend, and the love of my life.” n Faswilla Sampson, VP of Operations, and Kayla Smith, Director of Membership & Development, Personalized Medicine Coalition

CoNexus Cancer Assassins Treat Untreatable Tumors Certain cancers have long been thought inoperable or resistant to treatment, but a new therapy directly targeting tumors is changing the game.


study published in the Journal of Liver Research, Disorders and Therapy, presents a tumor-targeted intratumoral immunotherapy which was shown to greatly shrink or even totally destroy late-stage pancreatic tumors without surgery and within weeks of starting treatment. Pancreatic cancer is one of the most malignant cancers in the world. Aggressive organ metastases, such as of the liver, in latent stages generally prevents a surgical resection.

According to the study, a tumor-targeted immunotherapy could result in fewer patients undergoing an invasive surgical removal of the tumor and longer-term survival. The study states that in addition to non-surgical tumor destruction (debulking) tumor-targeted immunotherapy also showed favorable response to reducing tumor toxicity and hindering further tumor growth. CoNexus Care’s tumor-targeted protocol is designed to serve three vital functions. It treats untreatable tumors such as pancreatic, liver, or breast, without

surgery, and without collateral damage to surrounding tissues/organs. It enhances cell death via minimally invasive tumor-targeted injections. And it enhances systemic cancer immunity via introduction of autologous dendritic cell antigen designed to enhance cellular death (apoptosis); a primordial event to activate systemic T cell response. By destroying only the deadly tumor cells, healthy cells can maintain full functionality, and typically offer the patient no uncomfortable side effects like fatigue, pain, mouth

sores, diarrhea, nausea, blood disorders, nervousness, or hair loss. CoNexus Cancer Centers are in Southern California and Baja California, each providing highly trained and board-certified physicians with safe and effective therapies designed to destroy lethal cancerous tumors without compromising a patient’s quality of life. n This has been paid for by CoNexus Cancer Centers. Gregory DiRienzo, CEO, CoNexus Cancer Centers

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Leading the Way in PatientFocused Cancer Care in the Face of COVID-19 Athenex Oncology is focused on both medical treatment and emotional support for people with metastatic breast cancer (MBC), which is especially important during the COVID-19 pandemic. Tim Cook, senior VP of Global Oncology Marketing, explains. How can Athenex Oncology help patients during the COVID-19 pandemic? We’re developing oral therapies that patients can take at home to avoid going to an infusion center, which is significant during the pandemic. We want to offer care and support that transcend the traditional confines of healthcare.

Can you tell us a little more about the new Facing MBC Together campaign? Facing MBC Together is a public education and support campaign featuring individuals who share their stories and advice around feelings of anger, loneliness, and hope. It gives people with MBC an elevated voice and platform. It includes a website and a mobile app that provide resources to help people facing MBC create a support network and feel less isolated. This campaign reflects our desire to support the MBC community in meaningful ways.

This has been paid for by Athenex Oncology.



It’s Time to Get Cancer Screenings Back on the Books Many people have understandably delayed their regularly scheduled cancer screenings during the pandemic, but the time has come to get these important preventative tests back on schedule.

For 35 years, the Prevent Cancer Foundation has encouraged routine cancer screenings as an essential tool in preventing cancer or detecting it early, when successful treatment is more likely. We know screening saves lives, which is why it’s a central focus of our work. It can be challenging for people to prioritize prevention and early detection in the best of times. But we never could have predicted that 2020 would bring us a pandemic, further challenging cancer prevention and early detection. Making adjustments When the coronavirus arrived in the United States, so many things were put on hold — including rou-

tine cancer screening. According to Epic Health Research Network, screenings for colon, breast, and cervical cancers dropped between 86 and 94 percent from January 20 to April 21 of 2020. We also know from a recent Prevent Cancer Foundation survey that many people are still planning to postpone or cancel their screening appointments. Many of these cancellations are due to fears of exposure to the coronavirus. But healthcare providers have been working hard to implement procedures to keep everyone safe. Some providers have new processes for patients to check in and wait from their cars, or they have visual markers in the waiting room to help people maintain physical distance. They are likely requiring staff and visitors to wear masks, conducting temperature checks and COVID-19 questionnaires before visits, and doing frequent and thorough cleaning of all spaces and high-touch areas.

Getting back on track As restrictions lift in many places, it’s important to get cancer screenings back on the books. Anyone due for a mammogram, Pap test, colonoscopy, PSA test, lung cancer screening, skincheck, or dental appointment should reschedule their appointment immediately. Likewise, it’s important to keep kids on track for their scheduled vaccinations to protect the next generation from preventable diseases. And 11 and 12-year-olds should be getting the human papillomavirus (HPV) vaccine, which protects against a virus that can cause at least six types of cancer. Cancer screening is never onesize-fits-all, and that’s never truer than during a pandemic. Personal circumstances may change the risk calculation for rescheduling these appointments, and should be discussed with a healthcare provider. n Carolyn Aldigé, Founder and CEO, Prevent Cancer Foundation

A Pioneering Treatment for Dim Light Disturbance

The App That Can Help Keep Kids From Losing Their Vision to Amblyopia Instances of amblyopia (lazy eye) may reach an all-time high during this pandemic due to the lack of vision testing. It is the leading cause of permanent vision loss for children, despite the fact it is preventable when detected and treated early. Lack of vision screenings due to school closures, combined with less efficient patient flow in doctors’ offices, puts kids ages 4-7 at the greatest risk for permanent vision loss. To fill the testing gap, AMA Optics has developed a vision test available to anyone with an iPhone or iPad. The Diagnos-

ticGame® app, available on the App Store, uses patented technology that combines visual acuity and relative brightness (rivalry) to automatically analyze vision loss. Parents, grandparents and caregivers can now use their mobile device for vision testing. The DiagnosticGame® is the only remote test that separates those needing glasses from those that require treatment for amblyopia. This automated test plays like a game and is easy enough for most 4-year-old children to enjoy. The DiagnosticGame® app is being studied by Steven

Biopharmaceutical company Ocuphire is pioneering the first treatment for dim light disturbance, a condition that affects thousands of Americans.

Kane, M.D., Ph.D., a pediatric ophthalmologist at Columbia University in New York. He tested 286 children and reported the preliminary results at the American Academy of Pediatrics meeting in 2018. He concluded that “Brightness rivalry may be the most sensitive and specific method to detect amblyopia.” n For more information, visit or call AMA Optics at (305) 389-0928. This has been paid for by AMA Optics.

Night vision disturbance, or dim light disturbance, is a vision impairment disease that has only recently entered clinical studies. Dim light disturbance occurs when a person’s pupil dilates in low light conditions, allowing even a small amount of light to cause halos or glares that impair vision. Mina Sooch, the CEO of Ocuphire, a biopharmaceutical company that has pioneered the study of dim light disturbance, said the ailment affects tens of millions of Americans, and there is currently no treatment. “No one has studied night vision disturbance in clinical trials,” Sooch said. “In a way, we have pioneered this as an unmet need. It’s something where hopefully we’re able to raise the awareness and then, through clinical trials, have a treatment in a few years.” There are several known causes of eye damage that increase dim light disturbance. As well as natural aging, people who get intraocular lenses can develop dim light disturbance. It’s also known to affect people who have had Lasik surgery. Ocuphire’s product, Nyxol, is an eyedrop. “You can take it before the evening or as needed,” Sooch said. “It’s an alpha one antagonist or an alpha one blocker that works on the iris dilator muscle and allows it to relax. It’s a very durable eye-drop. We found over all our studies that it lasts over 24 and up to 36 hours.” This has been paid for by Ocuphire Pharma. Ross Elliott

AMA Optics




Did you know that Low Oxygen Levels Breed Cancer? Increasing Cellular Oxygen Levels Kills Cancerous Cells

Chemotherapy and radiation are used to fight cancer because cancer cells are weaker than normal cells and therefore may die first. The implication of this research is that an effective way to support the body's fight against cancer would be to get as much oxygen as you can into healthy cells, and improving their ability to utilize oxygen. Raising the oxygen levels of normal cells would help prevent them from becoming cancerous. And increasing oxygen levels in cancer cells to high levels could help kill those cancer cells. The seminal discoveries by the 2019 Nobel Laureates William G. Kaelin Jr., Sir Peter J. Ratcliffe and Gregg L. Semenza revealed the mechanism for one of life’s most essential adaptive processes. They established the basis for our understanding of how oxygen levels affect cellular metabolism and physiological function. Their discoveries have also paved the way for promising new strategies to fight anemia, cancer and many other diseases.

The link between oxygen and cancer is clear. In fact, an underlying cause of cancer is usually low cellular oxygenation levels. In newly formed cells, low levels of oxygen damage respiration enzymes so that the cells cannot produce energy using oxygen. These cells can then turn cancerous because they don’t make enough energy to function normally in the body. D Warburg won his first Nobel Prize for proving cancer In 1931 Dr. is caused by a lack of oxygen respiration in cells. He stated in an article titled “The Prime Cause and Prevention of Cancer… the cause of cancer is no longer a mystery, we know it occurs whenever any cell is denied 60% of its oxygen requirements…” “Cance “Cancer, above all other diseases, has countless secondary causes. But, even for cancer, there is only one primary cause. Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar. All normal body cells meet their energy needs by respiration of oxygen, whereas cancer cells meet their energy needs in great part by fermentation. All normal body cells are thus obligate aerobes, whereas all cancer cells are

Get More Oxygen Into Your Cells Because cancer cells can handle small amounts of oxygen, and some a lot of it, oxygen is not a strong cancer killer. Maybe 5% of its benefit is from killing cancer cells. Approximately 45% of the value of increasing oxygenation in the body is to prevent cells from turning cancerous, and about half of its benefit lies in its ability to support the body. This can be particularly important when someone is in poor shape, and especially so when cancer is in the lungs and is inhibiting their uptake of oxygen.

who suffers from an underlying condition should “ Anyone know that this potential treatment option is available. -Norbert Kiss, Circularity Healthcare, President and “ CEO

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