MHP: A useful model for understanding the conflicts and intersection of race in medicine can be found in American folklore. It's a story told about the black men who worked as day laborers on the railroads that knit our nation together in the 19th Century. Their hero, John Henry was the strongest, most powerful steel driving man working on the railroad. One day, when a salesman showed up with a steam-powered drill, John Henry, facing a challenge to his strength and skill, agreed to a contest against the machine. When the dust cleared, John Henry had drilled 14 feet and the machine only nine. And the triumphant John Henry had only enough time to raise his hands in victory before he collapsed and crashed to the ground. John Henry, the strongest man on the railroad, had died from a heart attack. But he lives on in the field of cardiology where the term “John Henry-ism” is used to describe health disparities affecting black men. Men driven, like John Henry, to push their bodies to surmount circumstances that are beyond their control and ultimately succumbing to the forces working against them. Here with me now at the table, Anne Pollock, Assistant Professor of Science Tech and Culture at Georgia Tech and author of "Medicating Race." Dr. Harold Freeman, Founder of the Harold P. Freeman Patient Navigation Institute and Ralph Lauren Center for Cancer Care and Prevention. Alondra Nelson, Associate Professor of Sociology and Gender Studies at Columbia University and author of “Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination”, and you remember from yesterday, Dr. Jonathan Metzl, Professor of Psychiatry at Vanderbilt University and author of "The Protest Psychosis." So Anne, I want to start with you, since we’re talking about John Henry, here. What does race have to do with cardiovascular health?
AP: A lot. What my book looks at is the history of heart disease research in the United States since the founding of heart disease as a research as a field. What I found is that throughout heart disease, researchers have been really interested in asking questions about a disease that is understood to be related to the American way of life. Early on, heart disease researchers were really focused on elite, white men and the kind of stressful lives they were living that were sedentary. And obviously, that was not all Americans in the 1920’s and ‘30s. There were a lot of people that were left out of that story. And so, with kind of the progress and democracy that has happened through social justice movements, those notions about heart disease risk have also expanded. We saw in the post-war period, with the Framingham heart study, both white men and women, including new white immigrants, being studied. With the civil rights movement, there was a lot more interest and attention in the lived experience of African-Americans, which include lived experiences of heart disease.
MHP: Well let me just say, I can imagine there are people watching right now who think “Wait a minute, didn't she ask a question about heart disease and words like social movement and race and identity, you know, start emerging. Why are we talking about that when we are talking something so clearly biological? So medical?
AN: Right. Well, because health is politics by other means. Health is a terrain, a space in which we struggle over access to resources. Whether or not one is healthy has everything to do with access to resources. And so, what Ann's book shows so well, is it is about social justice and about how communities are trying to get access to the medical system, which has been historically segregated in American society. But I think it's also about the class issues. The part of the John Henry story that you didn't raise, that you could have, is that he was a former slave. So he's a former slave, and he’s working in the context of sharecropping. This is about a time and a societal context when black laborers were supposed to work themselves to death. And so, in a more contemporary moment, you think about John Henry-ism now and it’s like, people work because they have to work. You are driving yourself not only because of ideas of masculinity, about black masculinity, but because you don't have health insurance or because if you do not go to work you don’t get paid. And so the driving is not only about a personal disposition, about being hyper-masculine, but it’s also about a social context that forces people to work when they shouldn't.
MHP: So, bring that all the way down for me, Jonathan. Because we are still in a meadowland of access to resources... What does that look like on the ground if I am a, as many African-American women are, a small business owner and I do hair, right? I'm earning a decent income. But then I'm sick and can’t do hair that day. Or maybe I get very sick and I don't have health insurance. So, what does this inequality look like on the ground?
JM: In the quiz you asked the viewers before the break, you asked a trick question: Is this cultural, or is it biological? What I teach at Vanderbilt, I tell my students that if you vote, it's cultural or biological. If you say it's one or the other, you are not going to pass my class. It's both, in a way. What phenomena like John Henry-ism and Ann's book show is that social factors… social issues like oppression that are invisible, and also privilege, have profound biological implications. So if somebody is working against, you know, factors in society that make it hard that they can't afford to lose a day of work or something like that, that in a way, that will impact their biology. So what we look at is that it’s not just culture. That everything is socially constructed. It’s that biology is influenced by culture, which I think is a radical notion in the history of medicine.
MHP: Doctor, as I was reading about the decades of work that you have done in Harlem, this is exactly the insight that you initially had. It was, here I have been trained as a doctor to treat bodies, and then you came to Harlem and found that that was going to be insufficient.
HPF: Absolutely. And I think it comes to the fundamental question: What is race? I think we have to make a distinction between what we call race and what racism is. So, how do we get to be black in America, for example? Through the one drop rule. And what is that? It came out of slavery. So, when a person owned another person who was a black slave, they didn't want to lose that person through mixing of races. By the time of the Revolutionary War, for example, there were slaves on plantations who appeared to be white, but they were called black. What ultimately occurred was what we call the “one drop rule”, meaning you have one ancestor, no matter how far back in time, you are black. Well, in the Harlem renaissance in 1920, it was taken up by black Americans of all colors. And, they had resisted this false concept of one drop rule-ness, which is really ridiculous. They decided, okay, let's call ourselves all black because they are treating us all the same anyway. So there was a convergence of a false rule with an accepted rule. Now people who are black, by the rule, don't say I'm not black. But it’s not a biological issue.
MHP: Yet, it's real, right? So on the one hand we want to be able to say it's not a biological reality, but it has real biological implications for our health.
AN: Absolutely. I think this is one of the ways that it's really important, when talking about race and medicine, to move beyond talking race in genetics. Because, genetics can't change in a clinical encounter. They don't change over the course of an individual’s life. But biology can and does change. And so that's both what makes it a really urgent sight to pay attention to, because our lived experience is going to happen in our biology. But it also makes it a little less depressing than your statistics suggested, because that does mean that social change can --
MHP: When we come back, I want to ask about Patient Navigation and I want to ask “Can we cure race and or racism with a pill? We like to do everything with a pill. Stay there…
Doctor, so you are looking at this higher death rate among African-American women and the answer wasn't a kind of medication for them or even personal... It was Patient Navigation?
HPF: Yes. Here is the background: Some 40 years ago, I came to Harlem as a trained surgeon, a cancer surgeon. I faced women, particularly who were coming in with breast cancer where the mass was bleeding and ulcerated when they came in. Unacceptable. We started this, we found a 39% five-year survival rate of those women before intervention. I did two things. I found a way to screen those women for breast cancer, including mammography, by 1979. That helped, but it wasn't enough. I held hearings, as president of the American Cancer Society in 1989, on cancer in the poor. Out of those hearings, we found all American people who are poor face barriers when they’re trying to get into and through the health care system. So I invented something called Patient Navigation at Harlem Hospital. Essentially, we put people on the case. The patient comes in, sees a doctor, navigator takes them aside, “Did you understand what the doctor said?” Probably often not. Explain it then. “Is there any barrier to you getting the biopsy that’s recommended?” “I don't have insurance.” “We have to solve that.” Complexity of the health care system… for many people, they can’t get through. Fear and distrust. Babies at home alone. No matter what the barriers, Navigators solved the problem. The problem is broad. it starts with people living in a neighborhood. They have to be navigated to a place to get an examination. The examination must be done, such as a mammogram. When there's a finding, be sure the patient gets rapidly to diagnosis. People are lost in that interim.
MHP: And I'm thinking, that requires a way of understanding the patient as a full person, right? And not just as a diagnosis. Anne, and it feels different to me, the part you write about in the book [looking at Anne P.], looking at this cardiovascular difference, and then BiDil. Actually having a prescription that is for black bodies, and not sort of a prescription that is for poor lives.
AP: Well, yes and no. Actually, I think a lot of the way BiDil emerged actually is from the same kinds of practices. The organization that ran the clinical trial that led to BiDil was Association of Black Cardiologists, and their approach is very holistic. They see new medications that are found through clinical trials as absolutely being one component, alongside things like, for example, training church cooks in hypertension lowering diets, or ameliorating poverty in places that have real barriers to access. All of those things can go together. It's different when you look at it in the pharmaceutical market. And so, there's a real gap there. From the pharmaceutical company's perspective that was doing BiDil in its first release, they wanted a racially specific indication for the drug, so that that way their patent life would be extended and they can make more money.
MHP: And the pharmaceutical market piece really makes me nervous. John, in part because I know your work, but there are times when on the one hand you are looking at health disparity. You say OK, there's a pharmaceutical solution, maybe there’s a collective policy solution… But what if the thing that we are diagnosing with is, in fact, racialized?
JM: Well, I'm sure viewers of this show right now might be thinking, “How can we have it both ways? How can we say that race is social, but at the same time, doctors treat biological findings.” So when I talk to doctors, I tell them that studying the history of race in medicine is not telling us something about the particular genetic basis or serotonin. There’s a long history of showing how social factors influence the way we think about mental illness. And certainly in my book, I have some examples. During the 1960s is one example, in the protest psychosis, I talk about how the rhetoric of mental illness was mirrored -- the popular anxieties about black power. And so, advertisements in the 1960s for Haldol, all of a sudden, there's one there. That was an ad for in the American Journal of Psychiatry from 1968 right after the Detroit riots. In a way, history shows us that right after this incredibly politically charged moment, the rhetoric of what mental illness was mirrored a social reality. And this is not to say that doctors are racist. It’s to say that we need to be continually aware because we are surrounded in the present day with assumptions about race and health that we need to be aware of.
MHP: In fact, this month will mark the, sort of, diagnosis to drape to mania. This idea that, if you are an enslaved person who wants to be free, that’s a mental illness, right? Not that if you are an enslaver. So we don’t define racism as a mental illness. We define the desire to want to be out from under racism as potentially a mental illness.
AN: If I could loop the circle a bit, one of the interesting things, in the same period Jonathan is writing about with the black power period, where they are being, in some regard, overexposed to the bad things about medicine. It's also a period where a community of health activists in black communities are starting to mobilize around health care, in part because you have the advances of the legal changes of the voting rights act and the civil rights act, and it brings into relief to all that remains undone. So that health disparities and health inequality becomes more acute, or comes into view. Part of what the communities were doing was creating something that was a very preliminary effort at the wonderful, you know, Patient Navigation system that Dr. Freeman is doing. So that clinics would have what they called patient advocates and the person would be, you know, “Is there lead in your home?” “Do people not have access to food and these sorts of things. There's sort of a longer historical trajectory to the important work that Dr. Freeman does.
MHP: So, this Patient Navigation, we’re thinking of it as a policy because we’re framing it within the context of ACA. But it begins as a kind of social movement activity.
HPF: It does, indeed. Health disparities are driven by three major things, in my opinion. One of them is poverty and lack of insurance. A circle of poverty. Another one is how people behave, the culture. There are good cultures and bad cultures. They’re not really related to race directly. And then there’s social injustice. Those three things overlap and drive disparities from prevention all the way to the end of life. Navigation is an attempt to look at this total continuum and navigate people from where they live, through health care, through treatment – timely treatment, quality treatment – to the end of life. It seems to work. We changed the five-year survival rate at Harlem from breast cancer from 39% to 70%, by screening and navigating.
MHP: Wow! And that… for all of the depressing of what it means to think about these inequalities, that's the point I want us to leave on. That you changed that survival rate. And in changing survival rates, you change whole communities.
If you want to understand today, you have to search yesterday ~ Pearl Buck