We are excited to begin sharing the speakers who will take the stage this coming March 2-4 in Boston, MA at TEDMED 2020. The first group of speakers we’re sharing is revolutionizing the way we think about health and enabling new ways to achieve a healthier humanity. You can learn more about the speakers and their fascinating work here.
We’ll be sharing more in the next few weeks, including this year’s session themes, so be sure to keep an eye out. You won’t want to miss this year’s event—register today!
Massive Science is a digital science media publication that brings together scientists and the science-curious public. The team at Massive joined us at TEDMED 2018 and covered talks by various speakers including Daniel Streicker. Check out their coverage of Streicker’s 2018 TEDMED Talk below.
Many of the world’s deadliest viruses didn’t originate in humans. Rabies, HIV, and Ebola are just three of the countless illnesses that have jumped from animals to humans. Known as zoonotic diseases, this kind of cross-species transmission is actually not an exception, but a norm. So in order to protect people from dangerous new diseases, we must first understand where and how people might be exposed in the first place.
Tracking the transmission of viruses across species is a monumental task. To do so, scientists conduct field research in far-flung places, often on multiple species—all hopefully without contracting diseases themselves. Take, for example, the deadly rabies virus, which is found in many animal species, including bats. Daniel Streicker is a senior research fellow at the University of Glasgow who has been working with collaborators in Peru to track the spread of rabies. Streicker’s been traveling to different barns and caves across Peru and hoisting nets around the exits, capturing vampire bats in order to tag and sample them. For Streicker and his research team, understanding how rabies is transmitted by bats was the first step toward learning what viral and host characteristics impact disease transmission generally.
While we may be racing against fast-evolving viruses, there’s no doubt human ingenuity is playing defense.
Just as Streicker started this project in Peru, the region began battling a rabies outbreak. Vampire bats typically live south of the United States border with Mexico (at least for now), and are particularly problematic because of their feeding habits: Since they bite other animals to feed, they’re “the perfect vector for this disease,” says Striecker.
While strategies to contain rabies transmission from dogs and bats are well established in North America, Latin America still suffers from widespread outbreaks. The numbers of cases have decreased, but many thousands of animals in Latin America still die of rabies every year. Especially in rural areas, which have limited public health infrastructure, the prevalence of the virus makes it dangerous for humans and animals alike. For farmers in particular, rabid bats are a constant fear. If a rabies outbreak from bats reaches their lands, livestock infections pose not only a health risk, but a problem for their pocketbook. “It doesn’t kill off thousands of livestock at once,” Streicker says, but cumulatively outbreaks are still a substantial public threat.
The researchers have learned that male bats are largely to blame for the virus’ spread, and that bat culling, a strategy used to reduce rabies transmission, may in fact, hurt the effort to stop rabies virus.
Streicker and his colleagues have been collecting DNA and RNA sequences from vampire bats, as well as other environmental DNA. By tracing and comparing the variations in these sequences, Streicker and his collaborators have learned more about how the rabies virus has moved around Peru. Their phylogenetic analysis works like this: Imagine 100 people start in the center of town for a bar crawl. Groups of people head in the directions of their favorite stops. At the end of the night, by comparing who went to which bar, you have an idea of who drank together. The variation within the sequences Streicker collects from DNA and RNA samples provides the same information about the rabies virus and bat populations. We now know, for example, how far the virus can travel in a year, and what areas may be most at risk. The researchers have learned that male bats are largely to blame for the virus’ spread, and that bat culling, a strategy used to reduce rabies transmission, may in fact, hurt the effort to stop rabies virus, since possibly infected bats typically disperse to new areas after populations are culled
To minimize public health risks, Streicker emphasizes the need to “control rabies in the bats themselves.” Luckily, a United States Geologic Survey researcher, Tonie Rocke has been studying bats in captivity to develop an innovative vaccine. Unlike normal vaccines, which would be unfeasible to deliver to wild populations, Rocke’s invention can be transmitted directly from bat to bat through skin contact. Combined with Streicker’s research, the scientists are hoping to target at-risk populations, like bats who live near a known outbreak. While these strategies may reduce outbreaks within five years, Streicker’s ultimate goal is a long-term solution. “It would be nice to have something to target elimination, more than just localized prevention.”
The insights these scientists are gleaning about rabies transmission may also be useful in understanding other diseases. Streicker, for example, recently published a bold theory about Ebola virus. He was curious if the Ebola virus was now evolving quickly as it spread among primates, reasoning that as the virus replicated within different hosts, it would essentially self-optimize in each. Could researchers use this virus evolution as clues to which animal host new outbreaks sprang from? If so, researchers could learn critical information during early stages of epidemics, helping prevent people’s exposure.
In the paper, published in Science, Streicker and his collaborators gathered hundreds of viral sequences, and then used machine learning algorithms to predict what animal host the viruses came from. These machine learning models were able to make predictions with 72 percent accuracy. Next, Streicker and his team hope to improve the model by testing its results in the field, but it’s already a notable step towards being able to predict and respond to Ebola outbreaks. During pandemics, the ability to run genetic sequences from samples through such a model could quickly narrow down potential hosts. Such a tool would benefit many neglected diseases, including Lassa virus, and other devastating illnesses.
Improving our epidemiological toolkits is important because the future of pandemics doesn’t look great. Responding to disease outbreaks requires a complex combination of local, national, and global efforts. Being able to warn a neighboring community of a potential rabies outbreak, intelligently inoculate at-risk bat populations, or predict the host animal of a deadly new virus would give public health officials a critical headstart in combating outbreaks.
As researchers sample and sequence diverse viruses across the globe, their insights can have a direct impact on response plans for pandemics. This is precisely the goal of the Global Virome Project (GVP). Although the international effort is in early stages, an initial project called PREDICT is collecting samples from over 30 countries. The collection of these samples provides efforts like Streicker’s more data to help predict virus behavior. “Everywhere we work, the teams are a resource for public health networks, strengthening capacity for secure and safe field surveillance, as well as laboratory training.” explains Dr. Jonna Mazet, global lead of PREDICT and member of the GVP steering committee.
While we may be racing against fast-evolving viruses, there’s no doubt human ingenuity is playing defense.
About the author: Joshua Peters is a PhD student in Biological Engineering at MIT. Around two billion people in the world are infected with a microscopic bug called Mycobacterium Tuberculosis. Despite this, only a fraction develop tuberculosis. And a fraction of those infected – almost 5,000 a day – die. He puts on Stranger Things-esque protection equipment and probes these bacteria to ask, what allows them bacteria to win this tug-of-war? To understand this variation, he looks at how both human and bacteria cells change on a genetic level in response to each other, as a member of the Blainey Lab, located in the Broad Institute, and Bryson Lab, located in the Ragon Institute and MIT.
TEDMED: You mentioned in your Talk that as you became more involved in medical robotics, you realized there are many non-traditional approaches to robotics. The exosuit, a soft wearable robot being a great example of a non-traditional robot. Are there any other innovative designs in the field of medical robotics that stand out to you, or that you have worked on recently?
Kathleen O’Donnell: There are tons of interesting robotics approaches out there! I recently read an article in Nature about a system that consists of individual robotic elements that come together and behave cooperatively to achieve locomotion and other complex tasks, similar to the way that the cells of living organisms work together to achieve complex functional behaviors. This example really helps to highlight the massive diversity in robotic approaches today.
TM: New technologies often require a lot of time and money to create. Are these things the biggest barriers to creating new innovations in medical robotics?
KO: One reason that it takes so much time and money to create new innovations in medical robotics is that designs need to be iteratively tested in representative use scenarios to properly develop and validate the designs. Then you still have to begin your summative clinical and engineering testing to ensure that everything is performing safely, effectively, and in compliance with relevant regulatory agencies (such as the FDA). One thing that has really helped to accelerate the development of the exosuit is that from the very early stages, we always were able to involve stroke patients and physical therapists in the device testing, through an IRB-approved protocol. This “early and often” approach to testing with actual users of the device (both the therapists and the patients) helped to ensure that each iteration of development was helping to move us closer to our end goals and allowed us to course-correct before we got too far off track.
TM: The exosuit was adapted to address mobility issues stemming from neurological disease. Do you think soft wearable robots like the exosuit will be used in a more widespread way in the future?
KO: Absolutely! The Exosuit for Stroke Rehabilitation that I discussed during my Talk recently achieved several major milestones, including completion of a clinical trial and achievement of FDA clearance and CE marking, meaning that the exosuit is now commercially available for clinics in the US and Europe to purchase for use in their stroke rehabilitation programs, making this the first (of many) widespread clinical applications for soft exosuits. Furthermore, the technology which comprises the core functionality of the soft exosuit is essentially a platform technology that can be adapted to a wide variety of applications. By leveraging the knowledge gained from developing the exosuit for stroke rehabilitation, we can more quickly develop systems to support additional joints, such as the hip or the knee, as well as additional patient populations, such as MS, Parkinson Disease, or TBI, for example. It’s really exciting to see how the first exosuits have lead to such a robust pipeline of innovation.
TM: In your Talk, you placed a great emphasis on the fact that the focus is always the people the technology is helping, do you think your experience as a patient plays a part in this mindset?
KO: I think my experience as a patient has certainly helped me to empathize with the patients we work with, and to understand why walking ability is such a powerful component of patients’ quality of life. However, even without this experience, I think it would be impossible to work as closely as we do with patients and therapists and not develop a deep sense of empathy and understanding for the challenges they encounter on a daily basis. The teams I have worked on have always placed an emphasis on going the extra mile to “get out of the lab” and better understand the people who are using these robots and understand what they are trying to achieve, and it is this mindset which continues to be instrumental to informing the design of exosuits throughout their evolution.
TEDMED: In your 2018 TEDMED Talk and exhibit, your work depicted a digitized future. What have you learned through the process of creating this work?
Marilène Oliver: I would say that they also depict a digitised present: the majority of my daily life is spent creating and moving packets of data around and the fact that I can now be represented as a high-resolution scan dataset pretty much sums how I understand and know myself! Understanding and questioning how we are digitised – both our physical bodies and our digitized activities – is fascinating for me, as it offers powerful metaphors to think about what and who we are becoming in the digital age. Equally, finding the right processes and materials to creatively re-export and materialise that scan data has been very important. There is no question that transparent materials were best for making my early stacked sculptures, then I needed to work with neon materials so that certain features could be highlighted and tagged. Now I am working with virtual reality: material concerns could disappear completely. Reflecting on the choices that I make in order to create artworks made from scan data teaches me a lot about my relationship to digitisation.
TM: Your work has strong scientific elements in it. Have you always had an interest in science?
MO: My interest in science has grown as my work has developed. I soon realized when I started working with scan data that many of the possibilities of the technology were not available to me (both practically and poetically) as long as I didn’t understand the science behind it. I started by reading as much as I could and trying to teach myself but when I needed more structure and reliable content I applied to do a long distance MSc in Imaging at the University of Edinburgh. This has helped me greatly, not only to understand the actual science of imaging better, but also to understand the rigid structure and pressures of scientific research compared to artistic research, but there is so much I still don’t know and it feels impossible to keep up! I strongly believe in interdisciplinary research and now at the University of Alberta I have been able to bring together a fabulous team of radiologists, computer scientists, digital humanists and nurses. We are currently developing projects that will allow us to create virtual and augmented reality artworks which is very exciting.
TM: In your Talk you discuss the challenges using MRI data posed, such as it being slow to acquire and could not be reformatted, which led you to use CT scans for your muse Melanix. What other challenges did you encounter when creating your work using digitized bodies?
MO: As I explained briefly in my talk, one of the most challenging times for me was moving to Angola and waking up to the fact that Melanix was not only a medical dataset that I needed to think about as a creative resource and material, but also a symbol of first world privilege. Until moving to Angola, I had taken scan data more or less for granted, but working with Melanix in Angola where the majority of the population had little or no access to public healthcare, let alone the possibility to be scanned, caused me to radically rethink my practice and my relationship to data acquired to cure rich white people when there were still countries with endemic malaria and people still die of tetanus poisoning every day. Making art with medical data in Angola demanded I realize my position as a privileged white woman of colonial heritage, which ashamedly I hadn’t considered until that time. This technology and these concerns are far from global and digital privilege is a huge issue that threatens to exacerbate the disgusting inequalities in the world.
The ethics of data anonymization is also something I find problematic. I understand it in medical research, but when it is being used to create artworks, I question whether this is always the ‘right’ solution. I have made scores of artworks using the Melanix dataset yet I have no idea who the original subject of the scan is. I would hope the work I have made would please the original subject if she were to know about it, but as we learn more and more how the digital data we generate is used and abused by government and corporations and other individuals, I think there has to be better discussions and global agreements about the ethics of data ownership.
TM: What are you currently working on? What is your inspiration for this work?
MO: Since my talk, I have made two virtual reality artworks and sculptural installations using a new high-resolution MRI dataset acquired with researchers at the University of Alberta. Deep Connection is the first work we made using virtual reality and was inspired from experiences using the Body VR app which allows 3D medical scan datasets to be loaded into virtual reality space as a semi-transparent block of data.
When the viewer enters the Deep Connection, they see a scanned body lying prone in mid-air. The user can walk around the body and inspect it, lie underneath it and walk through it. The user can put their head inside the body: dive inside and see its inner workings, its lungs, spine, brain. Using a virtual hand, they can then take hold of the figure’s outstretched hand, trigger a 4D dataset and see figure’s heart beat and lungs breathe. When the user lets go the hand, the heart stops beating and the lungs stop breathing. Deep Connection has an interactive soundscape made by Gary James Joynes made from recordings of the MRI scanner. When the user holds the figure’s hand a human voice sings a beautiful mourning song. The VR experience is part of a sculptural installation created using the same MRI data. The installation is comprised of a row of 3 sculptures of bodies into which the VR hardware is embedded/housed. The sensors are embedded in the chest of the outer two figures, and the inner figure holds the headset, controller and guards the workstation.
Tim Lu uses his extensive background in computer programming, electrical engineering and micrcobiology to engineer cells to act as living therapeutics. At TEDMED 2018, Tim Lu shared how his work in bioengineered medicine is enabling dynamic responses to disease in previously unseen ways. Watch his Talk, “Biological engineering—the nexus between computer programming and medicine” and read his post below to learnmore about his pioneering work.
Ever since the human genome was decoded, we’ve gained considerable insights into the origins of disease. The biological programs encoded by the DNA inside our cells are highly interconnected, allowing them to orchestrate the complex activities of life. When these fine-tuned interconnections within cells and between cells go awry, disease results.
With an increasing understanding of these dysfunctional biological programs and their role in human illness, scientists are trying to develop new ways to cure disease, not simply keep it at bay. However, our current armamentarium of medicines is dominated by small-molecule drugs and biologics, such as antibodies and enzymes. Although these medicines have resulted in tremendous advancements in human health, they are fundamentally limited in their activity and are nowhere as sophisticated as the disease networks they are trying to address.
For example, these drugs distribute systemically throughout the body and are not easily activated (if more activity is needed) or suppressed (if side effects are encountered). In addition, these medicines often only target a single mechanism of action, which may be insufficient to cure diseases. The basic problem is that we are using static, simple, non-living medicines to treat indications that are inherently dynamic, multi-factorial and living.
Fortunately, while we’ve been decoding our DNA and the biological programs we’re born with, we’ve also been learning how to design DNA to create new programs in living cells. The engineering discipline of synthetic biology has the potential to create powerful new medicines that can match the complexity of disease with even more sophisticated therapeutic programs. These medicines are called (1) cell therapies, where living cells are reprogrammed with artificial DNA programs and delivered into patients, and (2) gene therapies, where the artificial DNA programs are administered directly into patients, typically using a virus or a chemical carrier.
We’re already seeing these living cell and gene therapies have an impact on certain diseases, such as acute lymphoblastic leukemia (ALL). For example, a new class of medicines called CAR-T cells are made by extracting T cells from ALL patients, engineering them to kill any cells expressing a protein called CD19, and then reinfusing the living drug into the body, wherein the CAR-T cells eliminate CD19-positive leukemia cells, as well as normal B cells. These CD19-targeting CAR-T cells have achieved tremendous success in the clinic, with more than 80 percent complete response rates in some studies.
However, we’re only scratching the surface of what is possible with current cell and gene therapies. For example, CAR-T cells don’t work particularly well against solid tumors, such as ovarian, lung and liver cancers, or difficult-to-treat liquid tumors, such as acute myeloid leukemia (AML). Solid tumors have evolved multiple ways to block T cells from being active within the tumors, so that CAR-T cells can’t exert maximal killing activity against cancer cells.
More sophisticated genetic programming through synthetic biology can help overcome this challenge. For example, CAR-T cells can be engineered not only to kill cancer cells, but also to secrete multiple additional drugs that counteract solid tumor defenses in a multi-factorial fashion. Combination therapy encoded within a living cell therapy can address the complexity of cancer disease networks and significantly improve treatment effectiveness.
Moreover, diseases, such as AML, are highly heterogeneous, so that it’s difficult to find a single antigen target that can discriminate between cancer and healthy cells. Antibodies and CAR-T cells that only go after a single target can generate significant side effects by also killing healthy cells. This isn’t a major problem with CD19-targeting therapies in ALL, because people can survive ablation of all their healthy B cells (which make antibodies) by being supplemented with antibody infusions. However, when the healthy tissues that are inadvertently killed are irreplaceable — such as stem cells, cardiac tissue or lung cells — these side effects can cause substantial toxicity.
Fortunately, we no longer have to be satisfied with drugs that only rely on a single protein to distinguish between diseased and healthy cells. Leveraging synthetic biology, we can design cell therapies to sense multiple disease biomarkers and to respond only when a specific combination of biomarkers is encountered. For example, CAR-T cells can be outfitted with a “NOT gate” program to kill tumors when they express biomarker A but NOT biomarker B, and to prevent killing of healthy tissues that express both biomarker A and B. By doing so, we can significantly increase the safety margin of these drugs and enable enhanced potency against cancer cells.
These biological programs are just a few examples of how programming sophisticated living drugs can improve therapeutic outcomes. The emerging synthetic biology toolbox also enables living medicines that can be turned on or off by administering orally dosed FDA-approved small molecule drugs. Such medicines can be narrowly targeted against specific cell types or tissues, and that can even adapt their activity to dynamic and evolving diseases. A new era of programmable drugs is coming, and has the promise to deliver cures that match the complexity of human diseases.
Massive Science is a digital science media publication that brings together scientists and the science-curious public. The team at Massive joined us at TEDMED 2018 and covered talks by various speakers including Kathleen O’Donnell. Check out their coverage of O’Donnell’s 2018 TEDMED Talk below.
There’s been a bevy of heavy metal, superpower-imbuing robotic suits in pop culture — think Halo, Avatar, or Iron Man. In fact, these fictional portrayals were what inspired researchers at Harvard’s Wyss Institute in the Biodesign Lab to develop a new exosuit.
Initially, the goal of the exosuit project was to develop military applications. (Not surprising, considering the project was funded primarily through DARPA.) The researchers combined traditional robotics with flexible fabrics and lightweight parts, resulting in a soft, wearable design.
The scientists realized this technology could also be a medical tool. Kathleen O’Donnell, a staff industrial designer at Harvard’s Wyss Institute, met with clinicians and quickly honed in on stroke patients, who often suffer from weakness and loss of control in one side of their body. O’Donnell’s team envisioned designing a suit that could be attached around the waist and calf, to help stroke patients balance their strides, reducing the effort it takes to walk. Volunteers were soon recruited as study participants, and a team of roboticists, industrial designers, control engineers, and physical therapists began designing, testing, and iterating the suit.
The team quickly faced several major challenges. “We have algorithms that measure the way you walk and try to predict when are you taking a step so that we can time the assistance,” explains O’Donnell. This kind of responsive assistance was easy to control in soldiers, since they tend to walk with symmetric, regularly-paced strides. But stroke patients tend to walk with different compensations and irregularities.
“Her foot looked so much more confident, so much more stable. She was able to stand up straighter.”
“Everybody walks a little bit differently after their stroke. They have different compensations they may use. One person might hike their hip up as they’re walking. One person may swing their leg around as they’re walking,” says O’Donnell. “We had to understand how to ignore [the compensations] to some extent, but still get the information that we needed about their gait to time the assistance with their particular gait pattern.” This personalized capability required the team to build adaptable algorithms that adjust the suit’s required assistance with every step. The resulting exosuit never imposes how to walk — it just helps the patient walk naturally.
Another major difference between soldiers and stroke patients is body type. While it’s easier to design for the typically fit physiques of soldiers, stroke patients’ physiques vary widely. Since the suits need to attach closely to a patient’s body, individual body types can significantly change the design of the suit. O’Donnell explains, “From an apparel design side, understanding both the range and mechanisms we were using to attach [the exosuit] as securely as possible to the patients became more challenging.”
With a diverse group of patients, the team built a toolbox of strategies to individually fit an exosuit to every user. During one testing and recording with a patient, O’Donnell describes the patient’s transformation as dramatic. “Her foot looked so much more confident, so much more stable. She was able to stand up straighter.” While she acknowledges that fitting the suit required time, even without any optimization, the change in patients was frequently instantaneous.
From the beginning, O’Donnell and her team focused on patient volunteers who had experienced strokes and could immediately benefit from the exosuit. “It has been such an amazing process to work with all these volunteers from the community,” says O’Donnell. “Our first volunteer is still one of the volunteers who comes in, five years later.” Licensing the technology from the Wyss Institute, O’Donnell guided the transition of the exosuit and began to manage clinical trials in the hopes of making the suit available to the millions of stroke patients in the United States today.
“We are starting in stroke, but we could potentially see suits for MS or suits for Parkinson’s.”
So far, the exosuit has been tested on more than 40 patients. Of course, there will be potential challenges in scaling the technology. “We have made as much of an effort as possible to get as diverse a range of patients as we can. That includes body sizes and types, walking speeds, [and the] types of assistive devices they use,” O’Donnell says.
Giving freedom back to stroke patients is just the beginning. O’Donnell says the exosuit could help many other kinds of patients too. Other injuries or disorders are also on their minds. “We are starting in stroke, but we could potentially see suits for MS [multiple sclerosis] or suits for Parkinson’s.” With the ability to quickly alter and control the assistance, the exosuits could help people undergoing physical therapy by providing assistance when needed and taking it away to help rebuild strength. On the other side of the spectrum, the exosuit could be used at home to provide general, consistent assistance. Luckily, being made out of fabric helps reduce the overall cost of the exosuit. The possibilities for exosuits in medicine will be exciting to watch.
Aboutthe author:Joshua Peters is a PhD student in Biological Engineering at MIT. Around two billion people in the world are infected with a microscopic bug called Mycobacterium Tuberculosis. Despite this, only a fraction develop tuberculosis. And a fraction of those infected – almost 5,000 a day – die. He puts on Stranger Things-esque protection equipment and probes these bacteria to ask, what allows them bacteria to win this tug-of-war? To understand this variation, he looks at how both human and bacteria cells change on a genetic level in response to each other, as a member of the Blainey Lab, located in the Broad Institute, and Bryson Lab, located in the Ragon Institute and MIT.
After Hurricane Maria decimated the physical and material infrastructure of the island of Puerto Rico, Christine Nieves began to mobilize what could not be destroyed, the community. At TEDMED 2018, Christine shared the importance of community and how she and her team are finding ways to support healing from individual and collective trauma. Watch her Talk, “Why Community is our best chance for survival—a lesson post-Hurricane Maria” and read her blog post below to learn about her new venture, Emerge Puerto Rico (EmergePR) and why she is working to pioneer community-based climate change education and leadership.
Growing up, I didn’t see Puerto Rican figures as examples of leaders, visionaries, or doers that I could call role models. Through the radio, news, neighborhood and social gatherings, I learned that we just weren’t capable of solving our problems, running our island, or frankly, being accountable for anything. “Without America,” I heard repeated over and over again, “we will not have jobs, or food, or funds for public services.” I also learned that nothing good could ever happen in Puerto Rico; so why even try? This idea became an unquestionable truth for me. When I left Puerto Rico for college, I carried a mix of conspicuous pride for being Puertorriqueña and a disdain towards Puerto Rico, my mainland. People in Puerto Rico, I heard around me, were lazy, and just wanted things done easy, and then we had corruption throughout government and corporations making it difficult to be on the island if you were a regular hard-working family. Life for everyone around me was a constant survival struggle. I didn’t feel I had options, so I left the island, and promised to never come back.
Why I returned and how my view of Puerto Rico changed forever is what I go into detail in my talk. And while Hurricane Maria was my catalyst for this chapter, just this summer we had another Hurricane-level event: a historic million people 12-day protest that culminated in our highest-ranking elected official being forced to resign. Just like after Hurricane Maria, this summer the message was crystal clear: we, Puerto Ricans, have been believing a story about ourselves that is not true and when everything collapsed, when our leaders failed us, our true nature emerged. What we accomplished this summer and after Maria is more than a lesson about Puerto Ricans, it is a sobering truth about the greatness waiting on the other side of liberation. Liberation from our own ideas about our history, humanity and what we are capable of.
On Sept 20, 2017, the world changed for me, and for the 3.5 million Puerto Ricans living on the archipelago. Our home was flooded and my husband and I lost almost all of our furniture, clothes, books, technology—we’re still recovering! —but out of this devastation, we decided we needed to do something. And to our surprise, that something would turn into Proyecto de Apoyo Mutuo Mariana (PAM): a fully community-driven disaster response and recovery effort: kitchen, aid distribution, food delivery, arts, culture and recreation activities for kids, and a full transformation towards renewable energy sources, rain-water catchment systems, filters installed in natural water sources through the mountain, even solar-powered Wi-Fi and satellite communication. While in the midst of doing, we spent a lot of time reflecting on this question: How can our community (a so-called marginalized community) support human adaptation to a changing climate?
Now we face a unifying threat for humanity – our changing climate. And because Puerto Rico is an archipelago, our islands are living the future, NOW. Through Emerge Puerto Rico (EmergePR), our new venture, we are ringing a clarion call for harnessing wonder, awe and imagination as the birthplace of powerful community-based adaptations to climate change. In so doing we are moving beyond from fear, shame and guilt, towards the concrete examples that challenge our notions of what so-called marginal communities are capable of.
Puerto Rico, as it turns out, is bursting with audacious endeavors that are getting world-wide acclaim and our role at EmergePR is to make it impossible to ignore initiatives like PAM that every day become stronger all over our islands. When ALL of our attention and energy is placed on the inspiring history-bending and counter-narrative examples of human greatness we can begin to transform our future.
If you haven’t been to Puerto Rico, come see for yourself.
Massive Science is a digital science media publication that brings together scientists and the science-curious public. The team at Massive joined us at TEDMED 2018 and covered talks by various speakers including Christine Nieves. Check out their coverage of Nieves’ TEDMED 2018 Talk below.
As storms become more severe and more frequent, people around the world will need to get better at recovering from disasters. After Hurricane Maria struck in September 2017, for example, Puerto Ricans had to become experts in disaster recovery overnight. One such newly-minted authority is Christine Nieves, who has a vision of apoyo mutuo, or mutual aid.
Nieves left Puerto Rico when she was 18, after spending years feeling trapped on the island. She finished her education at UPenn and Oxford, but while living in the mainland United States, she realized that she didn’t have a sense of community. So she decided to return home, just a few months before Hurricane Maria made landfall.
Nieves remembers telling her mother, “I’m ready! We’re going to be fine”
Nieves now lives in a small, mountainous community in Puerto Rico called Mariana. She wasn’t concerned when she heard that a hurricane was on its way. “We didn’t know what was coming,” she said. Nieves remembers telling her mother, “I’m ready! We’re going to be fine,” — but the storm was much more destructive than expected.
After the worst of the hurricane was over, Nieves and her neighbors were in rough shape: Like most of the island’s towns and cities, there was no electricity, no running water, and no cell phone service. People in Mariana knew that because of their isolated location, it would take days for government aid to reach them, so they took matters into their own hands.
Nieves and her partner decided to start a community kitchen. They got permission to use an industrial kitchen space. Finding food and cooks was a little bit harder than they anticipated, at least at first. Immediately after the hurricane, it was difficult or impossible to call anyone, so they had to go door to door to contact people. “When everything collapsed, there was a different system left,” Nieves said. That effort made Nieves realize how reliant they had been on phones and the internet. “We need to really strengthen and understand how our infrastructure is fragile. But at the same time, we need to create systems that are not fragile, and not tech-related,” Nieves said.
She asked people, “What do you love to do? Do you want to come and join us?” Nieves ended up with a small team of local residents who had been hit hard by the storm, but still wanted to help. People contributed whatever they could, from beans to vegetables to bags of rice. Young people brought hot food to elderly neighbors. By the end of the week, the community kitchen was feeding 300 people every day. Even more importantly, everyone had a job to do.
Community-based mutual support is totally different from how disaster recovery is usually approached.
In some ways, this may sound like an idealistic community of preppers. But instead of an individual person building up a cache of canned food and guns so they can hole up and wait out a disaster, Nieves says that mutual support brings communities together.
Community-based mutual support is totally different from how disaster recovery is usually approached. In many places, including parts of Puerto Rico, disaster survivors eat government-provided MREs (Meals, Ready to Eat) and wait in long lines to receive water or charge their phone. That’s not to say they don’t want to do anything, but sometimes all there is to do is wait.
In Nieves’ model, mutual aid allows community members play an active role in the survival and rebuilding process. It’s not a new concept, but it’s one that was necessary in Mariana: Government officials didn’t reach Nieves’ community until 12 days after the storm subsided.
Nieves pointed out that once help arrived, there was an additional layer of complication: many of her neighbors don’t read English, so they were unable to understand the directions on the MREs that were distributed. They ended up eating them cold or without knowing what they contained.
So, even after some aid started coming in, the community kitchen continued. “Being able to eat something vibrant that was cooked with love transmits hope. We saw the difference between big operations that were giving you just enough food so that you wouldn’t die, and the abuelas [grandmothers] who were going to give you a big plate so that you would be full and nourished for the whole day, with a smile.”
Mariana spent nine months without electricity from the grid, and six without water. Even now, it isn’t back to anything resembling normal. “There are a lot of blackouts, so there is a constant state of not knowing if you’re going to need gas for your generator. You don’t know if your food is going to rot. If you depend on electricity for oxygen, dialysis, anything … good luck,” Nieves told me.
Still, Nieves has hope that the lessons her community learned after Maria will help other towns in the future. “We believe that this is a model, or at least a series of ingredients, that every community needs to have if they’re going to survive,” she told me. “Communities are our best chance at adapting. Together we might be able to create more.”
If you’d like to support mutual aid in Puerto Rico, you can make a donation here and read more about Nieves’ work here.
About the author:Gabriela Serrato Marks is a PhD candidate in marine geology at MIT. She uses stalagmites to create past climate records that provide context for future climate change.
TEDMED: In your TEDMED 2018 talk, you shared that you believe that healthcare in the United States is built on a middle-class model that often does not meet the needs of low-income patients. In your opinion, what are some of the assumptions made in the current model?
Mitchell H. Katz: Health care in this country assumes you can take time off from work to see the doctor, that you speak English, that you are literate, that you have a working phone, a safe home and healthy food to eat.
The current model is simply not designed to be responsive for people like one of my patients who developed partial blindness in both eyes but didn’t come to see me until days later because he had to work in order to pay the rent. Or my hospitalized patient from West Africa who spoke a dialect so unusual that we could only find one translator who could understand him. That translator only worked one afternoon a week. My patient needed to communicate every day. Or the diabetic patient who is homeless and has no refrigerator to keep his insulin or steady supply of food to keep his blood sugar under control.
That’s one of the reasons why it’s been so difficult for us to close the disparity in health care that exists along economic lines despite the expansion of health insurance under the ACA or Obamacare.
TM: Being aware of these assumptions, what are some of the actionable ways that providers can better meet the needs of their low-income patients?
MK: We need to redesign the system to meet patients where they are and remove obstacles. We need to provide what they need, not what we think they need. The right prescription for a homeless patient is housing. For non-English speaking patients, translation is as important as a prescription pad. And for people who do not have a steady supply of food, there is a variety of solutions. In New York City, we hired a bunch of enrollers to get our patients into the supplemental nutrition program known as Food Stamps. Other health systems are including food pantries at primary care clinics, or distributing maps of community food banks and soup kitchens.
But more than anything else, I think low-income patients benefit from having a primary care doctor. They need a team of people who can help them access the medical and nonmedical services they need. So many are disenfranchised from other community supports, and they really benefit from the care and continuity provided by primary care.
TM: Having run the safety net systems in San Francisco, Los Angeles and now New York City, you have an in-depth knowledge of the health needs in each area. Are there any striking similarities or differences between the needs in each city?
MK: One of the most obvious differences I’ve noticed is that in New York City, people don’t use primary care – they rely on specialists for every part of the body. I like to joke that folks here have left earlobe specialists and right ankle surgeons. That means there is less focus on prevention and wellness. That’s why I’m particularly excited about NYC Care, our new health access program for people who are not eligible for insurance. We can guarantee NYC Care members a dedicated primary care provider and a first visit in two weeks or less to help keep them healthy.
TM: In your experience in creating housing as a public health response, what resources need to come together to provide the necessary support, financially and otherwise, to achieve this?
MK: In Los Angeles, we housed 4,700 chronically homeless persons suffering from medical illness, mental illness, addiction. It really takes a village to make this possible. We need non-profit developers whose mission is to serve. We need health care providers and community based organizations that can provide onsite services, state and local governments that prioritize housing as a public health issue, supportive neighbors who welcome instead of fear and protest the influx of formerly homeless or substance users to their communities. And we need banks willing to finance these non-traditional construction projects.
TM: What is your hope for the future of the U.S. health care system?
MK: My hope is that people recognize the vital role of primary care in delivering high quality health care to diverse populations. That means valuing primary care doctors, both financially and spiritually, so that medical students want to become primary care doctors and truly meet the needs of their patients.
Massive Science is a digital science media publication that brings together scientists and the science-curious public. The team at Massive joined us at TEDMED 2018 and covered talks by various speakers including Yaniv Erlich. Check out their coverage of Yaniv’s TEDMED 2018 talk below.
Humans have an inherent social drive, and in this age of social media, we are more connected than ever. However, by constructing the world’s largest family tree comprising 125 million people, computational geneticist Yaniv Erlich, has shown that some of these connections run deeper — down into our genes. Erlich, who is a professor and researcher at Columbia University and CSO of MyHeritage.com, is revolutionizing the field of genomics by linking genealogical data provided online by volunteers to DNA with striking accuracy. Earlier this year, Erlich and his colleagues sent a shock wave through the field of genetics by showing that it is possible to uncover the identities of males who have taken part in “anonymous” genetic research without ever matching their data to a sample of their DNA. All you really need is the internet.
“Smoking…determines ten years of our life expectancy, which is twice as much as what our genetics determines.”
Genomic data is incredibly powerful. It can reveal migration patterns, or uncover interesting details like the distance people move from their place of birth to procreate. But more importantly, genomic data allows us to ask questions about human health, like how much genetic variations account for differences in individual life-spans. Large family trees allow us to analyze both close relatives and distant relatives, teasing apart the difference between genetic variations and environmental factors. Erlich, for example, found that genes account for only 15 percent of the differences in individual life-spans, on average about five years. Speaking about these surprising findings, Erlich says, “I think there is this notion that there is some fountain of youth in our genome, and we just have to find the gene to unlock it. But it doesn’t seem this is the case.” Erlich explains that since 1960, lifespans have increased linearly by about two months every year, despite two World Wars. Despite the many catastrophes of the 20th century, lifespans continued to steadily grow. Erlich says these findings mean that our actions might matter more than our genes. “Smoking for example, determines ten years of our life expectancy, which is twice as much as what our genetics determines.”
While genes seem to have relatively little impact on our life span, genomic data has allowed us to identify risk factors for a numbers of diseases. Using genome-wide association studies (GWAS), it’s possible to link genetic variants in different individuals to particular traits. The more statistically significant the link is, the more the data looks like the skyline of Manhattan. Ten years ago, Erlich says, these Manhattan plots actually looked more like the skyline of Los Angeles. But bigger sample sizes have become easier for researchers to access, thanks to initiatives like the UK Biobank, where an increasing number of genetic risk factors are being identified. Using data from more than 100,000 donors, obtained through the website DNA.land, Erlich has himself been able to discover the genetic bases for several traits in Israeli families.
With the help of civilian genealogy enthusiasts, genomic data is changing not only the landscape of health care, but forensics too. In April, thanks to the website GEDmatch, the FBI was able to link DNA from the unidentified Golden State Killer to a third cousin of the suspect who had voluntarily provided their own DNA to the free online genealogy database. By building a large family tree, and scanning the different branches of the tree until they found a profile that exactly matched what they knew about the serial killer, they were able to track down the suspect, test his DNA, and charge him.
Erlich is impressed by the power of genomics to improve demography, healthcare, and forensics. But he agrees there are many issues that still need to be addressed. For example, since these databases primarily contain people of European descent, non-European populations with certain genetic risk factors are missed, while risk factors identified in these European populations may not have the same implications for other groups. The most obvious reason for this disparity is economics. But many genealogy websites are free, and the price of DNA tests has dropped to as little as $49. Another reason may be access to family records. As Erlich says, “My family died in the Holocaust, so I have no means to go beyond a certain number of generations. It’s all lost.” A lack of record-keeping is also a problem for many populations. There’s also the question of social influence. “If I know someone who is doing genealogy, I’m now more willing to also do it. When you start with one community, it spreads from that community unequally.” Erlich does not have the answers for how to remedy the issue of diversity in databases, but believes that governments, at least in countries equipped with the resources, should take greater responsibility for driving genomic medicine.
Another complex issue is the issue of privacy. When it comes to genetic information, many of us are concerned that employers and insurance companies may use this information unethically. According to the Genetic Information Nondiscrimination Act of 2008 (GINA), employers and insurance companies cannot use our genetic information without our consent. But there are some major loopholes; for example, GINA doesn’t apply to life insurance. There’s also the question of how law enforcement should be allowed to use genetic information. The Golden State Killer case in particular raises many questions about privacy. Interestingly, 60 percent of Americans of European heritage (because they are over-represented in databases) have relinquished genetic information that could be used by law enforcement, and within three years, this number is expected to rise to 99 percent. Erlich says he’s not scared of these techniques being abused. He’s more worried about national security. “I’m more concerned about foreign governments using the same techniques to identify U.S. individuals. Think about CIA operation in some countries. The whole point is that it’s covert—you don’t know the identities of these people. It’s very easy to disguise your face and get a fake passport, but you can’t change your DNA.” At the end of the day, there are no easy answers. “It’s a tricky question of justice, and how to define that,” he says, pointing toward the need to make genetic information part of a public good, rather than be used for monetary gain. But the limits may be hard to find. He says, “I don’t know what’s the right answer.”
About the author:Yewande Pearse was born and bred in North London. She is now a Research Fellow based at LA Biomed, in affiliation with the University of California, Los Angeles (UCLA). She completed her PhD in Neuroscience at the Institute of Psychiatry in 2016, which focused on the potential use of gene therapy for the treatment of Batten disease, a fatal neurological pediatric disease. She is now working on stem cell gene therapy using CRISPR-Cas9 to treat Sanfilippo Syndrome. Before completing her PhD, she worked in the areas of Stroke and Huntington’s disease research and also worked in a care capacity, with people living with Autism, suicidal ideation, dementia and HIV Associated Neurocognitive Disorder.