Primary care for the residents – and the soul – of a small town in Indiana
Physician recounts work with patients struggling with opioid addiction, HIV.
When the COVID-19 pandemic spread in 2020, William Cooke, MD, FAAFP, FASAM, AAHIVS, already had extensive experience with public health crises.
He did his best to help patients manage two of them when the opioid epidemic led to the spread of HIV as users shared needles to inject the drugs in Austin, Indiana, where Cooke leads Foundations Family Medicine. The HIV outbreak there became national news in 2015, and Cooke has received accolades for quality of care, service, and leadership.
Cooke described his experiences in his book, “Canary in the Coal Mine: A Forgotten Rural Community, A Hidden Epidemic, and a Lone Doctor Battling for the Life, Health, and Soul of the People.” He spoke with Medical Economics about changes needed in health care, the continuing opioid crisis, and being a primary care physician in a small Midwestern town.
Medical Economics: The subtitle of your book is “A Forgotten Rural Community, A Hidden Epidemic, and a Lone Doctor Battling for the Life, Health, and Soul of the People.” Can you describe Austin, Indiana? What is the town like?
William Cooke: Austin is a rural community in southern Indiana. It's actually just off of I-65, but it feels disconnected from the surrounding communities to a lot of people who lack transportation and resources that most of us take for granted. And so Austin is, I mean, your basic “Tale of Two Cities.” It's people who grow up with opportunity and resources and access and then it's people who are born into circumstances beyond their control that they didn't choose, where they don't have the same access to resources and opportunity that again, the rest of us take for granted.
ME: You mentioned a hidden epidemic and people may not think of rural Indiana as a hotspot for drug use. Can you talk about how you first came to encounter the opioid epidemic there?
WC: It wasn't long after I started my practice in 2004. I was frankly overwhelmed by the number of people coming in asking for prescription drugs, anxiolytics like Xanax, muscle relaxers, often in combination. And I was alarmed by how many people were actually even able to go out of town, go to pain clinics and get a pretty strong number of prescription pain pills that they then been brought back to the community as well. As soon as I opened the doors, it was pretty evident that there was something bad going on in the community and it wasn't unlike many rural communities across America at the time and even today.
ME: U.S. Centers for Disease Control and Prevention figures had showed from 2010 to 2014, HIV infection rates were stable in the Midwest. And yet Austin, Indiana, made national news for the outbreak of HIV in 2015. Can you explain how that spread was related to the opioid use?
WC: People were using painkillers for a variety of reasons, sometimes for mental health issues or to fill in that gap of a sense of belonging or having their basic human and safety needs being met, or just that they'd been on them over a while and had become dependent on them. There was a shift that occurred around 2010 where more people were injecting. We saw this locally through an increase in soft tissue infections, endocarditis, hepatitis C cases. And hepatitis C is spread the same way that HIV is spread, so it was just a matter of time before we expected to see an HIV outbreak. The fact that HIV numbers were kind of holding steady, actually speaks to something in and of itself, because in general, new HIV cases had been declining for decades. Because they kind of leveled off something different was happening that was underneath the surface and a lot of that was the injection drug use issue that, again, wasn't just occurring in Austin. It was occurring and still occurs in urban settings as well as rural settings. Austin just happened to be the site where that exploded through a true outbreak and ended up being the worst outbreak among people who inject drugs in U.S. history.
ME: You mentioned that Austin is not necessarily an isolated case or a fluke or a freak accident. Can you talk about some of those common characteristics in communities in other parts of Indiana and other parts of the country?
WC: There's really these concentrated pockets of poverty and lack of access all across our country. We think of America being the land of opportunity. But some people are born into circumstances and situations, again, that they didn't choose to be born into yet it limits their access, and it's kind of an obvious thing to say, but people can only make choices from options available to them. And if they were born into a community and in circumstances where their access to choice is limited, again, they didn't choose to be born into that circumstance, but they can only make choices from the options available within their communities. So there are these pockets of concentrated poverty and lack of opportunity within their communities and they're in rural areas, they're in urban areas, either through discrimination, bias, or through deindustrialization, where jobs have just fled. And if you don't have transportation, you can't get to a place where you can learn a trade or get a job or even access health care.
ME: One of the appendixes of your book deals with social determinants of health. What do those mean to you in the theoretical or academic sense, and what do those actually mean when you're a physician practicing in a small town?
WC: I really think that we need to change what we think of as health care. I don't believe health care is what occurs inside of clinics and inside of hospitals. That's more or less reacting to the health outcomes that have already occurred to people. And what I would like to see us redefine health care as is what's happening to people where they're born, where they're raised, where they're living. It's things like whether or not their basic human and safety needs are met. Do they have access to transportation? Is there humane housing, a livable wage, lifelong learning, a sense of connection or a sense of belonging, a sense of community? These are the things that really we know through decades of research resulted either someone doing well in life or not doing well in life, either having access to prosperity, health and wellness, or ending in early disease, disability and death. Jerome Adams was the surgeon general a few years ago and he released a report called “Community Health & Economic Prosperity.” And they identified these social determinants of health as being powerful predictors of how well a community is going to do from a health standpoint, but also from an economic standpoint. That was a powerful report because it shows that in order for a community to have economic prosperity, it needs to have healthy individuals living within that community in the first place.
ME: For the last two years COVID-19 has been the predominant medical condition that everybody has been dealing with, and yet opioid overdose deaths hit a new record in 2021. Are people paying enough attention to the opioid epidemic now?
WC: I don't believe so. And when they do, it's often through the lens of character assassination, these are bad people doing bad things and they don't belong in our community. And we fail to recognize that oftentimes it's our neighbor, it's our, sons, daughters, aunts, uncles. It's people who we often know. I would imagine most people have had someone close to them from a family or a relation, an acquaintance somewhere, who has had a bad outcome related to substance use. And if it wasn't illicit, it would at least come from the alcohol-tobacco side of things. Alongside this all along has been the fact that more people die from alcohol-related deaths than all the other substances that we consider illicit combined. That's a startling realization. And I think it's important that we put those two together because I think we've gotten to a place where we're OK not blaming somebody who drinks but offering them help and we need to do the same thing for people with other substance use disorders. Somebody's substance use disorder might be from alcohol. And we say that individual needs help, then we're going to connect them to the resources that they need. We don't call them a bad person doing bad things and try to ostracize them. The same needs to be offered to someone with a substance use disorder that might be an opioid. That's still somebody that's struggling in life. Most kids grow up not hoping to become addicted to a substance. Something happened along the way that derailed that life. As physicians, our job is to try to figure out what those things are and help them reconnect to purpose and meaning, prosperity, health, and wellness in their lives. And so somebody with an opioid use disorder, it's the same opportunity to try to dig in there, figure out what needs are going unmet, what resources, choices that they don't have access to, and try to reconnect them to that. Now oftentimes, it's a community issue, their community that they are associating with happens to be one that isn't healthy, but if we can reconnect them with a community of peer support, upward mobility, connecting with job opportunities, they often do much better.
ME: In the public policy arena, what would you like to see happen next?
WC: If we’re really serious about making sure that everyone born in America has equal access to life, then we're going to have to recognize that our life expectancy in the United States is actually falling. And if you compare that to the rest of the developed world, and you graph that, you can see that we're falling off where the rest of the world is. And then you combine that with the amount of resources and money that we're putting towards health care in America, the difference is just really appalling. It's not even close. And it really speaks to the fact that as far as access to the amount of life someone has at birth, it's better to be born in another country than to be born in America. That's a hard statement to say, but it's true. If you're born in America today, you're going to have less access to life expectancy than if you're born in one of the other developed countries. So if we're serious about making sure that everyone that's born here has access to as much potential life as they possibly can, we're going to have to redefine what it is that we're doing. I often say that there's no place on earth better to be sick than America. We do a great job of keeping sick people alive. But we don't do a good job of growing healthy people to begin with. And as physicians, we study hard, we work hard. We invest a lot in our patients, and a lot of times that's responding to what's already happened to them. We do a good job here in America but wouldn't it be better if we move towards a model where public policy was addressed to health in such a way that, when they're coming to us, they're not already so sick, or disabled or, moving towards an early death? And we can do that by just making sure that every child born in America regardless of the circumstance that they were born into at birth, by their choice, had access to their basic human and safety needs, had access to transportation so they could get to school, so they get to a pharmacy or a clinic, to a job. Housing, a livable wage, outdoor and green spaces to thrive in, and just that sense of community. There's children born and raised in America that never feel like anyone ever cares for them. And it just shouldn't be the case.
ME: You mentioned a couple of times, that sense of community. What's the best part about being a small-town physician? What's your favorite part about your job?
WC: The favorite part about my job is just the relationships that I have the opportunity to form and watch evolve over time. I've been doing this long enough to see kids who I delivered, grow up and have families of their own, which is really a treat to be able to see. And then be able to work with the entire community. As a family physician, I've been trained to do just that, to work with families, work with communities, and respond to those needs. And I enjoy seeing how things have evolved over time and, in some ways maybe worsen, but then we can build some programming, work with the community, build coalitions, address those needs, and then see that those needs are starting to improve and maybe something else gets uncovered in the community and we can start digging into that. So I enjoy that part of being a physician.
ME: It sounds like there may be a few quirky characters that you encounter along the way among the people living in Austin. What was it like writing the book and recounting those experiences?
WC: I went into medicine because I really wanted to help people find their purpose and meaning in life and to gain access to prosperity, wellness, and health. And it's wonderful when you're able to connect with somebody on that level. It's also really tragic when you see somebody who has every potential in the world to do well, not do well and sometimes even die. And then when I recognize certain ways that I initially was interacting with patients in the community and choices that maybe have contributed to people not doing well, those were difficult lessons, but I felt like I needed to share those because one, they really happened, and two, I learned a lot from them. And three, there's other doctors out there that I think deserve to see what happens sometimes when we do what we think is the right thing to do, what we're trained to do, and then the consequences of those actions may not be what we ever intended them to be. So it was difficult to be that vulnerable, honestly. But I thought it was important to share those stories even when I failed and failed people and the lessons that I learned from those.
ME: Medical students and younger physicians have just come through the COVID-19 public health crisis and could get into another with the opioid crisis. What advice would you give to them?
WC: To always figure out what life looks like through the lens of our patients. With the COVID-19 pandemic, for example, a lot of people felt very disconnected. Not everyone has broadband data plans, technology, or the know-how to be able to stay connected. Imagine you live in an area that doesn't have broadband. You may not have a data plan on your phone. You may not have grown up in a home that embraced technology. And so then you go into the pandemic and we're isolating from one another. Many of us were able to stay well connected with others. A lot of my patients were easily able to transition to video calls to stay connected to caseworkers to peer support groups, to churches, to their therapist, that sort of thing. But there was a significant number of my patients not able to do that. And so trying to figure out ways to stay connected with people, decrease the barriers that people have to the care that they deserve to have and we want them to. We came up with a program to provide tablets that were data-enabled to those that may not have had data plans, smartphones, broadband, to stay connected to them. So I would encourage young doctors coming out or early doctors from any generation to always be looking for ways to minimize and decrease the barriers that our patients have to care.
Another suggestion – I think it's really important for doctors, whether they're young or been doing this for decades, to really do a lot of self-care. We’ve got to take good care of ourselves to be there to take care of other people. We've been given more and more demand. Insurance companies aren't helping with the amount of administrative burden that we have, and they're not helping offset that administrative burden by increasing our reimbursement. So we have to hire more staff, lower reimbursement, more work to do. It's really easy to feel overwhelmed. And alongside that, we want what's best for our patients, but oftentimes, insurance companies and the system at large isn't really thinking about what's best for their patients, but what's cheapest or what can save them money. And that dissonance between what we really feel is the right thing to do, and what we're able to do, that can cause some harm within us. Because we went into medicine to take really good care of our patients. We've been trained to do evidence-based care, and we're prevented from doing that. And that can hurt. I think that's why we're seeing a lot of people feel burned out. But being willing to stay connected to the patient, feeling that empathy and that compassion for the patient, and remembering the reason we went into this in the first place. And then doing that self-care and then getting the sleep that we need, taking some time off, doing some mental health breaks, eating right, some exercise, finding some things that we enjoy doing outside of medicine, those are so critically important. I think those are the antidotes to the burnout that we all are at risk of everyday we come into work.
ME: Our main audience is primary care physicians. Are there any messages you'd like to deliver to them, or anything you'd like them to know?
WC: I want all of the primary care providers out there just to know how grateful I am for the work that you do each and every day. I know how hard this is. I know how much it hurts sometimes, but you all are the front lines. You're not the gatekeepers, you are the ones who impact people's lives the most of any profession that's out there. Primary care providers have the potential to literally change the trajectory of a child's life, change how long a person has access to life. Prosperity – we just talked about how health and prosperity are linked. And so by helping someone live a healthier life, you're giving them access to prosperity, which is also health in our communities. Primary care providers are really uniquely positioned to respond to the needs of our communities. And those needs change and they're new to our individual communities. And being able to respond to those are what we're there for. So thank you for all the work that you do. And I'm honored to stand alongside you in this hard work.
“Canary in the Coal Mine: A Forgotten Rural Community, A Hidden Epidemic, and a Lone Doctor Battling for the Life, Health, and Soul of the People,” by William Cooke, MD, with Laura Ungar, was published by Tyndale House Publishers. The book’s website includes audio chapters one and two read by Cooke, a free discussion guide and opioid infographic, and a link to “In This Together,” an online video toolkit with additional resources about opioid use, published by Indiana University.