Eric Dishman: Escaping One-Size-Fits-All Medicine with Your Life

“You survived cancer for 23 years and 14 months of isolation so far Eric, a video is not worth it. But, if I could go down to the auditorium, there would only be three or four people in it and you’d have a real stage to be able to walk around.” I’m shooting this at home, alone, in my living room cocoon. I have had my two COVID shots several weeks ago. So the CDC says, “Hey, Eric, feel free to move about the country with other vaccinated people.” But those are public health guidelines. Those are, by definition, one-size-fits-all guidelines that don’t fit a lot of people and probably really don’t fit a cancer survivor and kidney transplant patient with a pocket full of immune suppression meds every morning. I need “Eric health” guidelines, not public health guidelines. The thing is, I don’t think anybody in the world can help me know whether it’s safe to get out in the world right now, I have scoured the Internet for articles and that just made things worse. I joined a clinical trial for solid organ transplant recipients who have had the COVID vaccine. But the initial data came back that people on meds just like mine, had little to no antibody response at all. I have certainly reached out to my friends and colleagues at the National Institutes of Health. These are some of the best experts in the world on these topics. But they’ve kind of come back with, “Be patient, people like you haven’t been studied yet.” Or “We don’t know how to deal with immunity at the individual level. It’s hard to know what to do in your precise case.” So many cancer patients I help are in the middle of chemo or radiation or immunotherapy and would certainly like to know what to do in their precise cases. I have a friend who’s pregnant with some pre-existing conditions, and it is totally clear to both of us that her doctors do not know what to do in her precise case. But if you think about it, there are 350 million people infected with COVID. There has got to be millions of them out there, at least, wondering, “What do we do in my precise case?” Now, it’s not surprising that we don’t know how to figure out what to do for COVID at an individual level yet. I mean, it’s a brand new disease. It’s miraculous that in record time we have these incredibly, in fact, effective vaccines and treatments that are working for the majority of people. But isn’t this what we want eventually for our health, from our healthcare system, from our healthcare research, for all conditions to be able to know just what to do in your precise case? COVID is the ultimate example of the need for what we’ve been calling precision health for several years now. Really, when I look back I have worked on precision health for 30 years, and we are so close thanks to the generations of people who have participated in biomedical research, global citizens in so many different studies. We’re on the cusp of being able to prevent, even predict particular illnesses. And when you can’t be able to effectively and precisely know what to do in your precise case, we can do that based on your life print. I mean, think of your life print as this kind of thumbprint of you that exists at any moment in time based on your genetics, sure, but also your behavior, your habits, your socioeconomic status, your exposure to different environments. Precision health, thanks to modern technologies and some everyday technologies like smartphones, offer some amazing possibilities, if we can just get there. I mean, there’s the rise of the omics, these technologies that are helping doctors and scientists to understand how your body is programmed to respond to different things. There’s genomics, the whole genome sequencing that I had that helped match my medication, my chemo with my specific tumors, and recover from a cancer that I’d had for 23 years. There’s more genomics for different cancers, different conditions every single month. Same thing with pharmacogenomics; this is genetics looking at whether or not you should take this particular medication based on your genes. It's increasing all of the time. There's emerging fields like proteomics that are like, let’s understand what proteins are forming in your body right after a treatment to know whether we should continue it or not. Or metabolomics, which is understanding how you metabolize food and medications. Or microbiomix, which is all about your gut bacteria and knowing yours and the long-term health consequences that are going to come from that. But it’s not just about omics. There’s all kinds of other precision health possibilities. With the kind of health data that, quite frankly, marketers have about us, but imagine applying it to a much better cause. Think about finding a senior who’s alone at home with 10 medications to take having a customized reminder that fits their daily rituals, their routines at just the right time that they actually need it. Or a custom fitness and heart health plan for you. Yes, based on some of your omic data, but also the food preferences you have, what kinds of foods are available where you are, and, most importantly, how to do it in a coaching style that’s going to help you persist with the good behaviors. Think about the ability to anticipate health problems before they happen because of pollution you’ve been exposed to at work or home or at play. Think about a simple tremor watch that could help somebody with Parkinson’s know over the course of their day what’s the safest time for them to be able to still ride a bike or at least go for a walk? Or what about somebody with the early stages of Alzheimer’s who’s wanting to do the everyday tasks that matter, like baking biscuits or brownies, and intervening only when they need help and are struggling with some of the steps, like turning on the oven temperature. All of these examples of precision health are happening, some of them quite crudely admittedly, for a select few who are participating in the research. But meanwhile, the rest of us are stuck in a one-size-fits-all medical paradigm that basically needs larger studies, more diverse studies, and more people connecting to studies so that we can stop treating people as the average of who happened to have participated in a recent trial for your particular diagnosis. The problem is no one is actually average or almost nobody is. That is made so clear to me when I watch the show “The Voice,” which I’m kind of obsessed with. One teenager there looks like they’re 40 years old, like a pro linebacker. The next kid that pops up, same age, is more like me, the high school pip-squeak. Yet our medicine tends to treat them pretty much the same based on these broad and sometimes useless age categories. I mean, shoot, for my two dogs we at least have medications that we adjust based on weight and their age. Think about over-the-counter painkillers— I take a lot of these— 12 years and older take two tablets every six hours while symptoms lasts and under 12, call your doctor. What about your weight? What about what you eat? What about your metabolism or what about the other medications that you’re on? I admit over-the-counter pain meds are not an incredibly risky example to use, but treating people as their medical averages can be far more dangerous. I met my friend Leanne right after she was diagnosed at age 25 with breast cancer looking for a patient advocate, and she got lucky just like I did. She got access to genomic medicine that based on her genes matched a chemotherapy with her particular tumors and she was recovering unbelievably quickly; back to marathons, had a second baby, working full-time at a sports company, and, thank God, continued to make those amazing, healthy Vietnamese dishes that she had adapted from her mother’s home recipes. About a year after her cancer experience, she texted me that she was having some wrist pain and some side pain from too much weight lifting, so she was willing to go for a walk with me at a slower pace, something that I could handle. And not 48 hours later, before we could even think about planning that walk, Leanne died of a massive, sudden heart attack at her breakfast table in front of her three-year-old and baby and not even found by her husband until much later that evening. We were all completely shocked. How does this happen to somebody who is so young and healthy? It ends up she had gone to several doctors, including a cardiologist just to rule that out who had kind of dismissed her and said, “It is silly for someone so healthy to be in my office.” So no one— not Leanne, not her family— imagined that she likely had heart disease building up for several years before this heart attack hit. One of her doctors even came to the funeral and in front of guests was kind of defensively saying, “It’s unimaginable for somebody so young and healthy to die of a heart attack. Odds are one in a zillion.” Contrary to what her doctor said, the odds of a woman in the United States having a heart attack are far more than one in a zillion, even somebody as healthy as Leanne. The American Heart Association reminds us that one in four women in the U.S. dies ultimately of cardiovascular disease and that these days women die of heart attacks more often than men do. But we don’t know that according to one Yale health study, because doctors are misdiagnosing the symptoms of a heart attack 50 percent of the time in women. So that’s one hit, but then Leanne had another. We’re only starting to understand that people from South Asia who are finally being included in research, have heart disease at much younger ages with completely different symptoms and risks than the average of people that we had studied thus far. So Leanne died of a heart attack, but she also died of deadly biases in our scientific understanding and thus in our medical understanding. And this is the challenge. Our biomedical research data for probably 100 or more years now has been focused on mostly the health and bodies of Western European white men. Even a study as amazing as the Framingham Health Heart study that gave us whole new drug categories like statins and help us understand risk factors like smoking and things we had never heard of like cholesterol, and invented new prevention paradigms, new surgical paradigms. It must have saved countless millions of lives at this point. But even then, some researchers extrapolating from data of mostly white men to minorities and women have been harmful. And this is our big challenge. We need more diversity in research, but we’re caught in this double bind from two travesties in history that keep repeating themselves. Hesitancy is a hot topic word right now in this cultural moment of COVID-19. My friends say rage is a better word or perhaps just deep distrust of the vaccination campaign that’s rolling out. And who wouldn’t have distrust if you are a person of color who’s been through things like the Tuskegee Syphilis Study in the 1940s or a similar study by the organization I work for, the National Institutes of Health, giving Guatemalans STD’s to see what the impact would actually be. Or there’s the Henrietta Lacks story made popular recently by the movie that Oprah did, or things that are happening to tribes, like the Havasupai Tribe in the 1990s. But more recently, tribes are telling us about people coming onto their sovereign lands without proper consent and being there to do “helpful” healthcare research without permission. We’re stuck in this loop and with COVID-19 it’s like it’s happening all again. The disproportionate number of people who are infected by COVID are people of color, the disproportionate number of people who are dying by COVID. These inequities, these disparities, these institutional racisms in both our healthcare research as well as our healthcare practice are caught in this vicious cycle. They lead to distrust that’s well-earned. And that distrust means diverse people aren’t participating in research. That means the researchers are giving up and not inviting and creating conditions upon which diverse people can participate in research, which means our new science and our new cures continue to have disparities and despair and more distrust that makes the cycle go all over again. I can imagine somebody might be asking right now, “Eric, how are we going to have the power to counteract hundreds of years of “health history” that has often been harmful?” And my sort of instinctual answer— and I don’t mean to be flippant— is to echo, “If not us, then who?” thanks to John Lewis. I have three other answers that I have tried for 30 years now that seem to have been helpful to thousands of people dealing with cancer and kidney disease that may prove helpful in this particular moment. One, own your own health. Two, advocate for others. And three, sign yourself up. Own your own health is about wrestling with the fact that we are in a one-size-fits-all medical paradigm and trying to understand the diagnosis, the treatments that are being offered to you, and look behind the curtain to see if there is science of people like you back there. That means some hard homework of trying to understand the web, ask hard questions of your doctor, be encouraged to do a second or third opinion, and to know what your health goals are and what their risks are before you walk in for that treatment or test. Advocate for others is simply about doing these kinds of things for people who are either too sick or unable to own their own health. A lot of what I do for the patients that I help is just try to slow the process down and arm them with research or questions for the providers that can help them, before they jump into a treatment or test, step back just a little bit. “Sign Yourself Up” is about jumping into the biomedical research pool with both feet, but making sure that you understand the consent of the study that you’re signing up for. What are the risks? What happens with your data, with your privacy? If they have a participant advisory board for the study, join it, and be vocal. These are the kinds of challenges that we’ve got to overcome. Now, I’d be remiss if I didn’t share at least one “Sign Yourself Up” opportunity that I am positively biased towards, the “All Of Us Research Program.” This vision of President Obama and Dr. Francis Collins to recruit a million or more volunteers in the United States from across the country and across the spectrum with some audacious goals of making sure at least 50 percent of those volunteers come from racial and ethnic minorities who have been left behind in the research, and another 25 percent of other underrepresented groups; sexual and gender minorities, people living in rural and remote areas, people with lower socioeconomic status. And with 380,000 participants so far, we have exceeded those goals and even helped some of the pharma companies who were struggling to get diverse people to sign up for the vaccine trials know the community-based methods that were working for us. This time when we move forward on the research that’s going to enable precision health for all, we’ve got to include everyone. We’ve got to ethically make it possible for everyone to be part of the study, and that’s part of the cures, part of the miraculous discoveries that are life enhancing, that are life saving. This time we can do this. If you’re willing to jump in, jump into the pool with both feet but also with both eyes wide open. Do this for yourself, do this for your family, and do this for the future of health of your community. Thank you very much.