We shouldn’t wait for child sexual abuse to occur before we act to prevent it

Written and submitted by Elizabeth Letourneau.

Elizabeth is the inaugural director of the Moore Center for the Prevention of Child Sexual Abuse and Professor at the Department of Mental Health at Johns Hopkins Bloomberg School of Public Health, and is a past president for the Association for the Treatment of Sexual Abusers. Elizabeth spoke on the TEDMED stage in 2016, and you can watch her talk here.

Child sexual abuse is a preventable problem that causes needless suffering and harm. We can prevent it, yet we wait before we intervene, usually acting only after harm has occurred. Most cases of child sexual abuse – about 80% – occur in someone’s home while nearly 20% take place in institutions, including schools, camps, religious facilities, foster care and other youth-serving settings. In rare instances, abuse occurs in public spaces such as parks or shopping malls. Different settings offer different challenges and opportunities for prevention. Likewise, people who engage in harmful sexual behavior with children do so for a variety of reasons.

It’s not widely known that children and adolescents account for as many as half of all sexual offenses against young children. They may be acting impulsively, acting out their own abuse, or experimenting with age-inappropriate partners. Many simply may not know that engaging younger children in sexual behavior is harmful. Likewise adult offenders engage in these behaviors for many reasons. Different prevention programs and policies are needed to address the different factors that influence child sexual abuse.

To a large degree, our nation has ignored prevention in favor of after-the-fact interventions that focus on mandated reporting and criminal justice sanctions. When we have focused on prevention, it has been with school-based programs that attempt to train children to distinguish between good and bad touches. Yet no single approach can possibly be sufficient. What is needed – what is long overdue – is a comprehensive public health approach to the prevention of child sexual abuse.

We do not need to start from scratch to develop a national public health approach to child sexual abuse. Many youth-serving organizations already mandate child sexual abuse prevention training for staff and volunteers. We can look to them for good and promising practices. For example, Boy Scouts of America requires two adults to be present for all interactions with children. Likewise, training programs have been developed by organizations such as Stop It Now! and Darkness 2 Light to help parents, teachers, and child care workers detect and intervene in child sexual abuse. Essential to these and other efforts is empirical evaluation to determine their effectiveness. We would not release a vaccine without rigorous testing, and we should not broadly disseminate prevention practices unless and until we are certain they do the job of preventing sexual abuse against children.

A comprehensive public health approach will bring needed empirical rigor to this field and will help us expand prevention efforts to – for example – deter children, adolescents, and adults from engaging in abusive behaviors in the first place. As I discuss in my TEDMED Talk, we have begun to make exciting progress in this area.

A public health approach will also help us to move beyond focusing solely on the behavior of individuals to focusing on prevention at the community level, including design and messaging. For example, the Boys and Girls Clubs of America have invested deeply in identifying structural changes to their buildings that might reduce the risk of child sexual abuse. Some of their efforts, such as placing windows in all interior doors, increase the visibility of adult-child interactions. Does making such interactions more visible and “interruptible” discourage abusive behavior? Perhaps. But before we recommend that everyone remodel their buildings, it would be prudent to gather some data. The YMCA is looking into the use of creative signage to see if these can impact the behavior of adults towards children. Wouldn’t it be amazing if architects, structural engineers, and designers helped us solve the problem of child sexual abuse? The public health approach encourages such multidisciplinary collaborations.

There are no doubt myriad ways to effectively prevent child sexual abuse just waiting to be found. But we need the will to put significant resources into designing and testing these before-the-fact interventions. What we’ve been doing for the past 30 years – teaching our children how to protect themselves, mandating teachers and others to report abuse, and relying on law enforcement strategies – just isn’t enough. We can do much better. We can develop and fund a national public health prevention program to keep children safe from sexual abuse.

Human Potential at Work

Each year, TEDMED features stories and individuals that challenge our perceptions of limits and encourage us to imagine what’s possible. This November, two Speakers and two Hive Innovators will take the TEDMED stage and reveal how a better understanding of human nature may hold the clues to unlocking each individual’s unique potential.

Frans de Waal

For Frans de Waal, a primatologist and ethologist at Emory University, exploring human potential is directly linked to exploring the behavior of primates. By studying the ways primates behave under stress and how they make decisions, Frans adds context to our understanding of what it means to be an “alpha” female or male. Popular culture uses this term to refer to people who are controlling or sometimes even those who act as bullies; but in nature, an “alpha” is the highest ranking member of one’s sex and the animal that often assumes a leadership role by demonstrating qualities of solidarity, community, and experience. Frans’ observations on how human social structure mirrors primate social structure yield rich insights into our own society, what we value, and how we choose our leaders.

Whether you’re an elected official or the captain of your soccer team, becoming a leader often requires performing at your highest potential. But sometimes, when we feel pressure to perform at our peak, we falter. Barnard College President Sian Leah Beilock studies how people perform under stress and asks: why do we blunder when the stakes are high? Sian identifies how anxiety and stressful situations can actually create physical changes in our brains and rob us of our ability to perform our best. From students taking math exams to NBA players making free throws, Sian explores how we can adapt to perform under pressure. By channeling our focus, we can set ourselves up for success and enable ourselves to reach our potential.

Next, we shift our focus from individual performance to the abilities of large groups. Two Innovators from our Hive Program are focused on finding ways to improve overall health by creating tools that tap into the innate human potential to nurture and care for others.

Jo Schneier leads Cognotion and is working to improve the way we train caregivers, nurses, and nursing assistants to care for our rapidly aging population. To fix the shortage of qualified frontline healthcare workers, Jo believes that we must provide better training methods that empower workers and get them to work quickly. Cognotion’s unique program operates on the premise that there is narrative inherent in any teachable subject. Crafting this narrative into an immersive storyline, Cognotion’s story-based training tools feature high quality, high-production videos that engage learners using a medium that’s entertaining and familiar. And by connecting through story, learning happens on an emotional level that deepens understanding and maximizes impact. Through training programs that tap into the power of story, Jo’s goal is to not only transfer cognitive and physical skills, but to also instill dedication, confidence, and pride within our future healthcare workforce.

Mudit Garg is focused on improving healthcare operations to maximize medical professionals’ impact. Using an AI platform to monitor hospital data in real-time, the Qventus platform acts as a virtual air traffic controller for hospitals, helping to remove decision-making overhead from staff so that they can spend more time focusing on the patient experience and providing care. The software learns over time and is able to predict issues before they occur, recommend immediate actions, coordinate across teams, and engage the best team members for response. Hospitals using Qventus are seeing benefits across a wide range of outcomes, such as reductions in patient falls, length of stay, unnecessary lab tests. These benefits are having a clear positive impact on medical costs; and even better, doctors and nurses are focusing more time on providing care and improving patient outcomes and experience.

From examining our social structures and improving our personal responses to stress, to instilling caregiver training with a sense of meaning and leveraging the impact of health care providers through AI, these TEDMED 2017 thought leaders are helping us to be better equipped to activate our full potential. Furthermore, whether it’s through the lens of accomplishing personal goals or tackling problems in teams, these perceptive Speakers and Innovators are deepening our understanding of what it means to be human.

Promoting Health Through Policy

TEDMED celebrates the multidisciplinary approaches our Speakers and Innovators take towards shaping a healthier world. This year, we will hear from Speakers who are creating healthier societies on a government-wide scale. By prioritizing health policy, these individuals are taking proactive, systemic approaches to mitigate health risks in communities around the world.

When physician Agnes Binagwaho moved back to her native country of Rwanda in the aftermath of the devastating genocide, the country’s health care needs far outmatched its resources. Agnes knew she wanted to do something to help her country rebuild and become stronger. Agnes worked her way up to becoming Rwanda’s Minister of Health and led the effort of rebuilding Rwanda’s health care system from scratch. She implemented hospital infrastructure founded on communication, technology, and quality data and she instituted a comprehensive health information management system that helped fill in the gap left by the country’s lack of health care personnel. With this technology, Rwandans in the most remote parts of the country are now able to receive advice from health professionals and provide timely information regarding their community’s epidemiological status. As a result of Agnes’s leadership, Rwanda has had immense success in vaccination programs, touting 93% coverage for nine childhood vaccines, declines in maternal and child mortality rates by 60% and 70% respectively, and premature death rates for patients with AIDS and TB decreasing by 78%.

Like Agnes, former Senate Majority Leader and transplant surgeon Bill Frist understands that a healthy society can lead to a stable society. In the late 1990s, Bill and a team of physicians began making stealth medical mission trips to Lui, a remote region in southern Sudan. When they first arrived, they performed procedures in a bombed out schoolhouse. Slowly, year after year, Lui transformed from an area with no infrastructure and little commerce to home of one of the best-equipped hospitals in the area and a place where all people affected by the conflict could receive medical intervention. Recognizing that medical care was a foundation on which to build peace and trust, Bill promoted health interventions as a valuable form of diplomacy during his time as a legislator. After being called upon by President George W. Bush, Bill helped lay the foundation for the US President’s Emergency Plan for AIDS Relief, or PEPFAR, which was passed in 2003 with strong bipartisan support. The PEPFAR initiative has continued throughout presidential administrations, saving 11.5 million lives and increasing US approval ratings within the countries it operates.

Bill Frist in Haiti.

While Agnes and Bill have made great strides promoting health through policy at the national and global levels, changes at the local level are often critical in addressing individual health needs. In New York City, State Assemblywoman Linda Rosenthal is advocating for gender equity by fostering discussion and promoting policies around women’s health. One of the issues that Linda is tackling is the tampon tax. The average woman in America will use 300 tampons and pads each year, resulting in significant personal expenditures over a lifetime—a monetary cost that, in many states, is compounded by the taxes placed on these products. Linda has successfully repealed taxes on tampons in New York, giving the feminine care product—that was once taxed as a luxury good—the same exemptions as bandages and condoms.

Despite her achievement in removing the tax on tampons in New York, Linda recognized that many women and girls have a difficult time accessing feminine hygiene products in the first place. Today, Linda advocates for free tampons and sanitary napkins in low-income school districts, prisons, and homeless shelters. Often, only inmates who can afford the hygiene products receive them, and others must use rags or toilet paper to create makeshift tampons and pads, leaving them vulnerable to infection. In low-income schools, a young woman often has to wait in line at the nurse’s office to receive a tampon or pad, missing valuable time in the classroom. Linda is advocating for free bathroom dispensers to allow women to quickly acquire what they need so they won’t miss out on their educational experiences. Furthermore, Linda’s efforts are helping to ensure periods are understood as a healthy, normal occurrence, not a sign of sickness.

Whether they are addressing issues at the systemic or individual level—or working proactively to prevent them—smart policies have the power to improve and shape our health care. At TEDMED this year, we’re excited to hear more from these changemakers about their work improving the health of society through health policy.

Metformin and the TAME Trial: Magic Pill or Monumental Tool?

Written and submitted by Nir Barzilai.

Nir currently serves as Director of the Institute for Aging Research at Albert Einstein College of Medicine, where he is also Director of the NIH’s Nathan Shock Center of Excellence in the Basic Biology of Aging and the Paul F. Glenn Center for the Biology of Human Aging Research. Dr. Barzilai is also the Deputy Scientific Director of the American Federation for Aging Research (AFAR). Nir spoke on the TEDMED stage in 2016, and you can watch his talk here.

Today, the possibility of living healthier and longer is not science fiction—it’s science.

Thanks to the more than three decades of research in the basic biology of aging, a range of promising drug interventions are ready to transform growing older from a period of sickness to a period of vitality.

These interventions build on the knowledge that the biological processes of aging are the major driver of major diseases that afflict so many of us we grow older.

If we targeted or delayed aging, we could delay or prevent age-related diseases.The most promising effort is a new study, the TAME (Targeting Aging with Metformin) Trial: this novel clinical trial will test whether the drug metformin—a widely used, affordable treatment for type 2 diabetes—can delay the onset of age-related diseases including cancer, diabetes, and heart disease.

Funds must be secured in order to take what we have learned from the lab to human trials, but let’s be clear: metformin is not a magic pill.

Rather, the TAME Trial is a tool that can monumentally improve our health as we grow older. The metformin clinical trial will serve as the tool or framework for the most important medical intervention in the modern era since antibiotics—a new category of drugs that add years of healthy life as we age.

For each of us individually, TAME will help decrease disease. If successful, TAME is expected to lead to the use of Metformin and the development of other drugs to target aging and help delay or prevent the onset of debilitating conditions or diseases.

Plus, we will be less at risk for financial fraud or exploitation, as cognitive skills necessary for essential functions such as managing medications and finances—such as memory, reasoning, perception, and language skills—will be less impaired.

For society at large, the development of drugs resulting from the TAME trial will increase health care savings. A recent economic analysis showed that slowing or modifying age-related diseases by just 20 percent would save more than $7 trillion in health care spending in the United States alone over the next half-century.

We call this the Longevity Dividend: if we increase years of health as we age, we actually can decrease the financial burden of related healthcare costs.

Moreover, the TAME Trial would cost 96% less than the cost to develop and win market approval for a single drug: $69 million vs. $2.4 billion, as estimated in a 2014 Tufts University Study.

By focusing on metformin first, as a paradigm of a drug targeting aging, the TAME trial has the potential to unleash the powerful research and development engine of the pharmaceutical
industry to generate next-generation drugs, individually or in combination, to prevent and delay multiple age-related diseases.

In turn, we can transform aging from a period of sickness to a time of extended vitality, and age-related diseases can be treated more effectively and cost effectively.

In essence, we can live longer and live well.

With one American turning 65 every eight seconds today, the TAME Trial is a small investment that can make huge impact by saving trillions of dollars while invigorating millions of lives.

In an era of rising health care costs and unpredictable health care coverage, delaying or targeting aging could be the most efficient method of achieving primary prevention available to us in this century.

The field is ready to translate basic biomedical research into clinical trials like TAME, yielding therapeutic interventions that will extend health while decreasing healthcare costs.

With a concentrated, coordinated effort across the public, private, and philanthropic sectors, together we can move aging research from the labs into our lives.

The TAME Trial is poised to be a monumental tool to transform how we age.

The Healing Power of Art

Art exposes us to new ideas and people we may never otherwise meet, allowing us to have unique emotional experiences and to feel connected to one another. It promotes dialogue and creates a platform for us to share experiences and ideas. Research shows that the simple act of engaging with art is connected to positive health outcomes, such as reduced stress and anxiety.

TEDMED has long celebrated this connection between art and health. For example, in 2015, creative art therapist Melissa Walker took our stage to share how she engages patients with traumatic brain injury and post-traumatic stress disorder through making masks, giving service members a non-threatening platform to unravel their stories and unlock their emotions. And, last year, artist and patient advocate Ted Meyer shared his story and showcased his 18-year project Scarred for Life which chronicles the trauma and courage of people who have lived through accidents and health crises.

This year at TEDMED, we will hear from two artists who use their artistic talents to communicate stories about themselves and their communities. By sharing personal experiences of loss and healing, and depicting the emotional experiences of entire communities, these two artists are using are promoting well-being through their unique artistic outlets.

For cellist Zoë Keating, music has always been a means of risk-taking and personal expression. With her husband’s encouragement, Zoë gained the confidence to conquer intense stage fright and to pursue a professional career in music after spending several years in the tech world as an information architect. When her husband was diagnosed with stage IV non-smoker’s lung cancer, Zoë’s story pivoted and she took on another role—that of the caregiver. She paused her career to care for her husband and their young son, documenting their family’s experience navigating the complicated US health care system and their insurance battles on her music blog. After her husband died, Zoë coped and communicated through her music.

Zoë describes her music as a lifeline—a way for her to rebuild her world after loss and move forward. Scientific research has reinforced the healing power of music: researchers have found that music is intertwined with our experiences, creating musical and emotional memories which we can unlock to promote healing and recovery. For example, patients with brain injuries may be unable to talk, but are able to use singing as a starting point—propelling them on the path to regaining speech. Zoë remains an advocate for patients like her husband and continues to perform original songs influenced by her experiences and emotions. Each piece of music she performs is a story that brings her closer to her audiences than ever before.

Like Zoë, Artist Jennifer Chenoweth has experienced personal trauma and found healing through her art. Growing up, Jennifer faced physical and emotional challenges, and art provided her with an outlet and a community that she says helped lead her on a path to wholeness. Jennifer describes art as the “door to stories,” and through her XYZ Atlas project, she uses art as a way to explore how experiences create a sense of belonging and why we become emotionally attached to certain places.

Jennifer Chenoweth’s Hedonic map of Austin

By correlating psychologist Robert Plutchik’s wheel of emotions to a color wheel and using hundreds of anonymous responses to a survey about where individual emotional experiences have occurred, Jennifer created a “hedonic map” of her hometown Austin, Texas. The National Endowment for the Arts uses similar techniques to provide healing experiences for military veterans. The idea behind this program is that creative platforms help both patients and providers gain a more coherent understanding of the patient’s underlying status, making “invisible wounds” more visible and readily addressed. Jennifer sees emotion as a surrogate for health status. Her maps allow her to visually demonstrate both the disparities and commonalities of individuals in the community, providing lessons of compassion and connectedness.

TEDMED has always championed the role of art in health and its potential to promote well-being, whether by simply using exposure to uplifting art to expedite the healing of patients in the hospital or by creating a new platform to evaluate our communities and promote dialogue. These Speakers are making the invisible visible, and facilitating new ways for us to embrace our connectedness.

Navigating the Aftermath of Epidemics

The symptoms and implications of disease often reach far beyond the individual, carrying consequences for communities, countries, and sometimes the whole world. There are broad social, psychological, economic, and political ramifications when societies are struck by epidemics. Over the past few years, newspaper headlines and Twitter feeds have been filled with stories of Zika, Ebola, and malaria devastating entire communities. We have found ourselves bewildered by the unknown implications of these viruses, confronted with drug resistance, and in need of accessible and affordable diagnostic tools. This year at TEDMED 2017 we will hear from Speakers and Hive Innovators who are facing the challenges of epidemics head-on.

Ebola Survivors Clinic staff

As a rookie physician, Soka Moses helped lead his community through the bleakest days of the Ebola epidemic as Clinical Director of the Ministry of Defense Ebola Treatment Center in Monrovia, Liberia. Soka and his staff treated over 600 patients, risking their own infection and death. After saving hundreds of lives, Soka has now turned his attention to Ebola survivors. According to WHO, Liberia is home to 5,000 survivors, many of whom lost their families to the disease. That is not all that they have lost, as both patients and health care providers who have come in contact with the sick face severe social stigma that isolates them from their communities. Physically, Ebola survivors experience symptoms such as joint pain, dizziness, blurred vision, and the inability to concentrate to such severity that it precludes them from working. The unmet need to care for these patients prompted Soka to take on a new role as Director of the Ebola Survivors Clinic at Redemption Hospital in Monrovia, where he helps survivors reclaim their lives. While there are currently no cases of Ebola infection in Liberia, the effects still linger, and a recent outbreak of Ebola in the Democratic Republic of Congo is a reminder that continued prevention, detection, and response efforts are essential to ensure outbreaks do not turn into epidemics. To that end, Liberia and the United States are partnering to perform clinical research studies at Redemption Hospital and other sites across the country in order to ascertain the long-term ramifications of Ebola virus disease.

Like Soka, retina specialist Camila Ventura is working alongside her patients as they discover the still unknown, long-term consequences of a virus. Camila, who comes from a family of ophthalmologists in Recife, Brazil, works with patients and families affected by Congenital Zika Syndrome. Camila found herself on the front lines of the Zika epidemic after reporting ocular findings in babies with the Zika virus. While the number of cases of Zika infection in Brazil, the Caribbean, and the United States are down this year, US cities near the Mexico border—where infection data is limited and the rainy season has begun—are being cautious. One case of the Zika virus, likely spread from a mosquito, was recently reported in Hidalgo County, Texas.

There’s a new understanding of how infants with Congenital Zika Syndrome can present with a broad spectrum of symptoms, including visual impairments. Camila is actively gathering information on the visual impacts of this virus, closely following her infant patients to uncover the mechanisms behind their unique symptoms and the best treatment options for them. Her team partners with families of babies with Congenital Zika Syndrome to navigate the unknown prognosis and long-term consequences of this virus.

Zika can be a challenge to diagnose because there are so few copies of the virus in a patient’s body, which means that it requires a highly sensitive test. This year at TEDMED, we will hear from Omar Abudayyeh of SHERLOCK, who will take the stage during the Audacious session alongside 19 other innovators who are transforming health and medicine. At SHERLOCK, Omar and his colleagues found a new application for CRISPR technology, using it to detect and diagnose biologic material rather than to edit genomes. The team designed a way to detect viruses, bacteria, and cancer at attomolar levels, allowing for highly accurate diagnosis in incredibly small amounts of sample. The result is a simple and inexpensive diagnostic tool that can be rapidly used—vital when time is of the essence.

The Anopheles mosquito, which transmits malaria

While viruses like Ebola and Zika have presented the global health community with new and unexpected challenges in terms of our ability to offer timely diagnosis and treatment, our world has long been familiar with the suffering caused by malaria. Malaria remains a leading cause of death in developing countries, where young children and pregnant women are at greatest risk of infection. Physician and professor Nick White studies this disease from Mahidol University in Bangkok, Thailand. In 1981, Nick and his colleagues happened upon a Chinese scientific journal describing the antimalarial properties of an herb called qinghao. They performed large-scale studies, treating adults and children infected with malaria with derivatives of qinghao, commonly known as artemisinin. Artemisinin combined with a conventional antimalarial, or artemisinin-based combination therapy (ACT), quickly proved to significantly decrease malaria morbidity and mortality worldwide. Despite the effectiveness of the treatment, Nick and his team faced significant challenges convincing policy makers to adopt it, but found success after another party published an incendiary article in The Lancet. Now, this successful treatment of malaria faces new challenges, as artemisinin resistance has repeatedly emerged in Southeast Asia. In the past few years, Nick and his team have made advances in exploring the options available to eradicate these resistant strains.

Together, these Speakers and Innovators demonstrate diligence and ingenuity as they bravely tackle the overwhelming challenges surrounding epidemics. Whether by navigating the unknown effects of disease alongside patients or developing new ways to diagnose and treat pathogens, their work inspires hope. We invite you to join us at TEDMED this November to hear them share their remarkable stories.

Drug Addiction: A Complex Problem Requiring Complex Solutions

Every day, 91 Americans die from an opioid overdose. This shocking statistic is a clear signal that we are currently in the midst of the worst drug crisis in US history, according to the National Institute on Drug Abuse. Drug overdose is the leading cause of death for Americans under the age of 50, largely attributed to the rapidly worsening rates of opioid abuse. How this opioid epidemic spread across the nation is complex; similarly, treating the affected, preventing more deaths, and stopping the spread of this epidemic requires complex solutions.

Though the problem is widespread, so are the efforts to stop it. This year at TEDMED, we will hear the stories of three individuals leading the fight against the opioid crisis, and drug addiction more broadly. These Speakers come from West Virginia, which has the highest overdose rate in the country, a community library in Pennsylvania that sits next to an open space referred to as “Needle Park”, and British Columbia, Canada, home of the first legally-sanctioned supervised safe injection site in North America. By innovatively engaging their communities to combat the devastating opioid crisis, the TEDMED Speakers highlighted below are implementing promising new strategies to help stem the tide of this epidemic.

One of those individuals is Jim Johnson, the Director of the Mayor’s Office of Drug Control Policy in Huntington, West Virginia—a city with 10% of its 50,000 residents addicted to opioids. In Huntington, like in many cities and towns all across America, people from all walks of life—the young mother, the retired steelworker, the teenager—are affected by opioids, and the entire community bears the weight of addiction. One strategy that Huntington has used to deal with the drug crisis is incarceration. However, recent analyses have found that while state and federal prisons across the US house nearly 300,000 prisoners for violating drug laws, strict prison terms have not been correlated with decreases in drug use or drug related crime. As a former police chief and jail administrator, Jim realized that alternatives to incarceration were needed to effectively tackle addiction in his community. In his role at the Mayor’s Office, instead of solely working to curb the supply of illicit drugs, Jim chose to focus on decreasing demand. He’s partnered with diverse community organizations to help divert people addicted to opioids away from the prison system and to assist them in gaining access to treatment and reclaiming their health.

Huntington, West Virginia

The toll of addiction also reaches into schools, and tens of thousands of US children are affected by the opioid crisis. Like many of the children in Huntington, West Virginia, Chera Kowalski grew up exposed to drug abuse through her parents, who have been in recovery for over twenty years. Today, Chera is the Adult/Teen Librarian at the McPherson Square branch of the Free Library of Philadelphia, located in a neighborhood heavily affected by opioid abuse. Chera views the opioid crisis as a community issue, driven not just by individual behavior but by social determinants including limited employment, lack of housing, inadequate mental health treatment, and poor education.

Viewing the library as a public resource for her neighborhood, Chera sees her role, and the role of all public libraries, as one of community support and responsiveness. When Chera goes to work, she is there to help whoever comes through the library doors with whatever they need, to the best of her ability, at any time. Due to the library’s proximity to “Needle Park,” she is often involved in direct intervention with Naloxone—the injectable or nasal spray that blocks the effects of opioids—when someone overdoses outside the library. Other times, her role comes in the form of providing a supportive space for the young people in her community. Chera encourages kids affected by the opioid crisis to come to her for advice that often extends far beyond summer book recommendations and instead revolves around how to navigate difficult realities in their lives.

The Free Library of Philadelphia, McPherson Square Branch

Like Chera, Mark Tyndall, the Executive Medical Director for the British Columbia Centre for Disease Control, understands the importance of diverse types of community support for people and families battling drug addiction. Focused primarily on developing and implementing harm reduction models, Mark works closely with InSite, the first legally-sanctioned supervised injection facility in North America, which offers a clean location where people using illicit drugs can be treated with dignity. InSite also provides researchers with a valuable platform for data collection, enabling them to better understand the driving forces behind addiction. One such driving force is underlying trauma, as patients often use drugs to self-medicate. Mark believes that the best way to combat opioid addiction is by treating these underlying drivers and, in doing so, decrease demand for drugs.

The opioid crisis is complicated, and it demands intervention on multiple levels. These three TEDMED 2017 Speakers are pursuing solutions that help those affected across this spectrum. They are not alone, and a number of TEDMED’s Partner organizations are also working to combat this epidemic. Dr. Patrice Harris, head of the American Medical Association’s task force on opioid abuse will also be attending TEDMED this year, and she is calling for greater attention on treatment, saying that, “Until treatment for substance-abuse disorders is fully funded, I worry we won’t be able to reduce the number of overdose deaths.”

Given the severity of the opioid epidemic, we are looking forward to convening with these individuals and hearing their insights about this pressing health issue at this year’s TEDMED event. Their evidence-based health policy efforts, alongside their innovative and collaborative initiatives, are mobilizing communities to treat the underlying causes of the opioid epidemic, but there’s still more to be done. Join us this November to engage with these Speakers and to hear from them first-hand.

Learning about memory from instincts

Written and submitted by Tomás Ryan and Lydia Marks.

This guest blog post is by Tomás Ryan, Assistant Professor and Principal Investigator at Trinity College Dublin. Tomás spoke on the TEDMED stage in 2016, and you can watch his talk here.

How is it that we can remember a single experience for our entire lifetime and yet simultaneously forget things that are centrally important to us? To answer this question, we need to understand the fundamental mechanisms that enable memory storage and retrieval. However, until recently, research in the field of memory has mainly been conducted through the lens of amnesia. While this approach provides us with valuable clues about deficits in memory, it doesn’t always inform us about the physical nature of a specific memory.

To understand the fundamental basis of memory, we need to investigate how individual memories are stored in the brain. The best way to do this is to trace a specific memory starting from its inception. The process of learning a new memory involves a material change in our brains, which we refer to as a specific memory engram. In my TEDMED 2016 Talk, I explained my research showing that the data of memory persists beyond the functional experience of amnesia, thus separating the physical entity of a memory from the process of remembering.1,2,3,4 These findings, which have since been replicated by Christine Denny’s lab at Columbia University, show that in cases of amnesia our brains may lose access to our memory engrams, but this does not mean that the engram itself is lost or damaged.5 Rather, the mechanism for recall has been hindered, but upon reactivation of a specific memory engram we see recovery of the behaviour associated with that memory.

Image of a memory engram labelled in a mouse brain.

Given that we are able to retrieve memories even after they have been obscured by amnesia, we know that a memory must be stable enough to withstand the ever-changing environment inside and outside of our bodies. To give us a clue about the nature of a single memory, we can turn to another stable and long-lasting mechanism that drives our behavior.

Instincts: the innate, hardwired rules that inform our thoughts, beliefs, and behaviors. These are the factory settings of our brain. They are pieces of genetically encoded information that are vital to our survival as individuals and as a population. Like instincts, memories are also imperative to our success because they allow us to learn about cause and effect from previous experiences and to make predictions about the world around us. While both memories and instincts last for a lifetime, they are also malleable. Memories change through the process of recall, while instincts adapt as we acquire new information about the world around us.

But the connection between memories and instincts goes deeper than just having similar properties. We know that memories build off of our instincts and we use both of these tools to help react to any situation. Given this relationship, we can assume that there must be some continuity between the way our brains encode both memories and instincts. We can think of it as a shared language, allowing us to process instincts and memories as similar pieces of information.

Schwerpunkt sculpture by Ralph Helmick, on display in MIT’s McGovern Institute.

What if we were to look at memory engram research through the lens of evolutionary biology? We find a scenario where a particular learned engram becomes so valuable to a population that it is passed down through generations by culture or by environmental necessity. When an individual happens to inherit a genetic mutation (randomly formed in the sperm or egg producing cells of a parent) that allows this specific memory engram to become an innate instinct—or ingram—that person becomes better suited than their peers who have to learn this lesson through experience. After many generations, this ingram becomes more prevalent in the population by means of natural selection—out-competing the individually-acquired engrams. With this working hypothesis still in its infancy, there are many possibilities for investigation that will hopefully result in a better understanding of the fundamental basis of memory. If instincts are indeed formed by ‘copying’ memories, then it may eventually be possible for our future evolution to be driven not just by factors important for basic survival and reproduction rate, but also by our culture and education.

1. Ryan, T., Roy, D., Pignatelli, M., Arons, A. and Tonegawa, S. (2015). Engram cells retain memory under retrograde amnesia. Science, 348(6238), pp.1007-1013.

2. Tonegawa, S., Pignatelli, M., Roy, D. and Ryan, T. (2015). Memory engram storage and retrieval. Current Opinion in Neurobiology, 35, pp.101-109.

3. Ryan, T. and Tonegawa, S. (2016). Rehebbilitating Memory. Neuropsychopharmacology, 41(1), pp.370-371.

4. Roy, D., Arons, A., Mitchell, T., Pignatelli, M., Ryan, T. and Tonegawa, S. (2016). Memory retrieval by activating engram cells in mouse models of early Alzheimer’s disease. Nature, 531(7595), pp.508-512.

5. Perusini, J., Cajigas, S., Cohensedgh, O., Lim, S., Pavlova, I., Donaldson, Z. and Denny, C. (2017). Optogenetic stimulation of dentate gyrus engrams restores memory in Alzheimer’s disease mice. Hippocampus.

Promoting Equity and Increasing Accessibility For All

The term “health equity” is broadly used, yet somewhat abstract. The World Health Organization defines it as “the absence of avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically.” One angle of health equity that we don’t often think about is that of accessibility for individuals facing the barriers imposed by disability. This year at TEDMED 2017, we will hear from Speakers focused on improving equity for people with disabilities and who are working to make the world a more accessible place for all.

Automatic Alternative Text

Facebook accessibility specialist and engineer Matt King lost his vision completely in college. When he joined our accessibility team after more than 20 years in the accessibility field, one of the projects he was most excited to work on centered on using object recognition technology to automatically describe photos for people who are not able to see those photos. Today, with our launch of automatic alternative text, we're taking an important step towards achieving that goal.Automatic alternative text, or automatic alt text, is a new feature that generates a description of a photo through object recognition technology for someone who cannot see the photo. Before today, people who are visually impaired could only hear the name of the person who posted the photo as they scrolled past photos on Facebook. Now, if they're using a screen reader on iOS, they'll hear a richer description of the photo thanks to automatic alt text. For example, for a group photo on the beach, a person using a screen reader on iOS would now hear, “This image may contain: Three people, smiling, outdoors.” We are rolling this out in English over the next few weeks and will add more languages and platforms soon.Facebook's mission is to make the world more open and connected, and that means everyone, including the visually impaired community. Worldwide, more than 39 million people are blind, and over 246 million have a severe visual impairment. While this technology is still in its early stages, tapping its current capabilities to describe photos is a huge step toward providing our visually impaired community the same benefits and enjoyment that everyone else gets from photos. As Facebook becomes an increasingly visual experience, we hope our new automatic alt text technology will help the visually impaired community experience Facebook the same way others enjoy it.

Posted by Facebook Accessibility on Montag, 4. April 2016


Matt King is making technology and social networking more accessible and user-friendly for individuals with disabilities. As Facebook’s first blind Accessibility Engineer, Matt recognizes that as technology evolves, there is an opportunity to design it in a way that is inclusive and accessible for all users. A record-breaking tandem cyclist and three-time Paralympian, Matt is skilled at breaking through expectations and barriers. Driven by the belief that providing accessible platforms for creativity and social networking benefits everyone involved, Matt has channeled his determination toward creating equitable opportunities for people with disabilities to engage and make connections online. Matt challenges us to look at technology through a broader lens, make it more equitable, and work to redefine what is meant by “user experience” in Silicon Valley.

Amber signing with Wiz Khalifa

Much like Matt is making technology more accessible, American Sign Language (ASL) music interpreter Amber Galloway Gallego is providing the Deaf community with full access to the experience of music and live performance. Prior to launching her own production company, Amber had only witnessed lackluster ASL interpreters at concerts—performances that left her Deaf friends feeling bored and devoid of the same personal connection to music that Amber felt so strongly. After watching the expressive work of a Deaf dance company, she was inspired to bridge the access gap in the music industry. Her work is captivating, conveying emotions, tone, and guitar riffs through sign, interpreting for stage artists like the Red Hot Chili Peppers and appearing on Jimmy Kimmel Live! with Wiz Khalifa.

Amber’s work to make music more accessible to the Deaf community shines a spotlight on another area of inequality: health care. Often, health care settings fail to provide qualified interpreters for their patients or providers lack cultural competence when communicating with their Deaf patients. Because of language and cultural barriers, Deaf patients experience higher risk of morbidities such as cardiac disease and obesity, often entering the health system at a more expensive point in their care.

Another population often afflicted by a lack of access to care and feelings of isolation is the elderly. Numerous studies have shown that chronic loneliness and social isolation can have negative health consequences; in fact, loneliness exceeds obesity as a predictor for premature death. The experience of loneliness is not limited to a particular part of the world. In the United States and the United Kingdom, 30% of adults over the age of 65 and 50% of those over 85 live alone. Sophie Andrews, CEO of The Silver Line helpline, is committed to forging social connections and bridging the communication gap for older people in the United Kingdom. The Silver Line is a 24/7 hotline that fields 10,000 calls each week, providing callers with information about local services, friendship to combat loneliness, and a place to report neglect or abuse. Fifty-three percent of callers to The Silver Line say they have literally no one else to speak with. Sophie and her organization provide an accessible platform for older people to engage in confidential conversations without judgement.

These Speakers are taking steps towards connecting our world by creating platforms of inclusion. They have made music, health care resources, personal connection, and technology easier to access for so many people, improving health outcomes and personal well-being. We invite you to join us this November to hear their stories and learn more about their work.

Challenging the drug development status quo

Written and submitted by Sharon Terry

This guest blog post is by Sharon Terry, President and CEO of Genetic Alliance and Founding CEO of PXE International. Sharon spoke on the TEDMED stage in 2016, and you can watch her talk here.

We are told frequently that we’re fortunate to live in a new golden age of medicine, that advances taking place in genomic research, immunology and other biomedical research fields are bringing us closer to a horizon that will see more effective treatments and even cures for the diseases that have plagued humankind for generations.

And yet, the reality, to this point, is somewhat less glowing than the sales pitch. A study cited in the New York Times found that we’re spending more money than ever on drug development with fewer positive results to show for it. The study found that, for every billion dollars spent on pharmaceutical research and development since 1950, the number of new drugs reaching the marketplace has fallen every nine years by roughly half. So, we remain in a state in which there are thousands of diseases, but only hundreds have treatments.

There are a number of reasons to which we can point for this declining productivity in the drug development pipeline, from the higher costs of conducting clinical trials to the need for Food and Drug Administration reforms. From my own experience, however, I would strongly suggest that the biomedical research infrastructure needs to take a hard look at itself and ask, first, whether a hypercompetitive, non-collaborative approach to biopharmaceutical science is conducive to achieving optimal progress and, second, why it is not actively engaging some of its most valuable resources—patients and family members.

In my 2016 TEDMED talk, I discuss my family’s personal experiences with the medical research community after my two children were diagnosed with PXE, a rare genetic disorder that results in a slow advance of premature aging. After the diagnosis, we were contacted by researchers asking for blood samples for a research project focused on identifying the gene that causes PXE. Only two days later, another research center also wanted blood samples. Not wanting my young children to be stuck with needles twice, I asked if they could share the samples taken by their Boston counterparts. They looked at me as if I was suggesting using leeches and spells to cure this disease.

That’s when we realized that the world of biomedical research is an alien landscape to those of us who are unfortunate enough to be dependent on it. There is intense competition between scientists and academic institutions. Ok, I know that competition can generate great progress in an economic paradigm. But, in academic research, where information is critical to medical breakthroughs, and tax payer dollars are supporting the work, the hoarding of data in order to get more funding, more published articles, a better tenure track, and faster promotions is antithetical to what we need for our, and our children’s, health and wellbeing.

This experience also drove home the “us versus them” nature of researchers’ relationships with research participants and their families. There is a great deal of conversation and rhetoric around participant and patient engagement. In most cases, though, that phraseology is often code for recruiting more clinical trial participants to increase sample sizes. In seeing patients only as data points instead of true partners, biomedical researchers are missing a key opportunity to advance and accelerate their work.

My organization Genetic Alliance, in partnership with Private Access, is putting this theory into practice through an undertaking called Platform for Engaging Everyone Responsibly (PEER). The individuals participating in PEER are much more than statistics in a limited disease silo. They share health information and “patient reported outcomes,” from their lived experience, which warrant attention and resource commitment. In one example, we’ve worked closely with a number of sickle-cell patient advocacy organizations, learning from individuals about the aspects of the condition that matter most to them. Combining this with socioeconomic data, we were able to provide the FDA—for its patient-focused drug development program—valuable data from individuals who can’t come to Washington, DC for a hearing, and who are unlikely to use the agency’s web-based system to record comments.

This effort to better engage patients as true experts, is an initiative for which we should have the support of the full biomedical research establishment, instead of resistance. Too many times the experience of people living with a condition is dismissed or overlooked. There should not be an “us versus them” dynamic to pursuing treatments and cures. It remains, since my children were first diagnosed with PXE in 1994, a mystery as to why we’re not all in this together, pulling in the same direction.

It is clear that the status quo, when it comes to drug development, is not working. What will it take for us to wake up and realize that individuals and their families are not only demanding a change, but we’re leading the way to change.