ROCHESTER, N.Y. (WROC) — Harriet Washington took notice of inequities within the American health care system while working in Rochester, first within a hospital and then as Health and Science editor for the Democrat and Chronicle.
It was an opportunity to study at Harvard’s School of Public Health, though, that crystallized her mission to do something about it.
The University of Rochester alum and current Columbia University professor has since been writing books on medical ethics and exploring stories little known even in the medical world.
This week Washington is releasing her latest book, Carte Blanche: The Erosion of Medical Consent, which reveals current laws that allow companies to conduct research on patients without their consent.
Here’s her interview with Adam Chodak:
Adam Chodak: Before we get into your current work, I wanted to take a step back and talk about Rochester where you grew up in a way, you went to U of R, you ended up being a Health and Science editor at the D&C. What was that experience like?
Harriet Washington: It was quite heady. I enjoyed the experience very much. Before I was editor of Health and Science I had a variety of positions there. And I really enjoyed it. It was a great foundation. I hadn’t gone to journalism school or taken journalism courses so the on-the-job training was great and there were lot of interesting issues to delve into. I remember being particularly enchanted by Parkinson’s research which was taking place at the U of R.
AC: How did you move from journalism to academia?
HW: It was actually a pretty smooth transition because I was at USA Today as a Page 1 editor. Gannett had a loaned editor program so editors would cycle through the USA Today for half a year or so and I was on Page 1 and my eye was caught by the fact that the Harvard School of Public Health had three slots open for journalists. The catch was you had to have the scientific criteria as well, but I did so I applied and I got one of the slots there and it was a wonderful year. I spent the whole year at the School of Public Health. They were kind enough to extend it for another year. And it was fantastic, but it was also a very good transition because at the School of Public Health I got the kind of background courses that were able to enhance my understanding of science to the point that it made me a much better editor. I wasn’t writing at that point when I went to the School of Public Health, I had been editing, but after that I had been writing vigorously so it was a great transition and it was catalyzed by Gannett’s openness in letting me take it so it was great.
AC: How did you focus form on disparities within the health care system when it comes to minorities?
HW: My interest in medical ethics in general predated my work in newspapers. I had worked in hospitals for a very long time in a variety of positions, mostly pretty low level, secretary, technician in the cancer ward, but then I snagged my dream job running the poison center which was fascinating in many ways, but as it turns out the most dramatic way for me was when radiology gave us space in the hospital to expand they left behind some old file folders and I looked in these file folders being the curious person I am, I won’t say nosy, I read every case file and I was really struck by what appeared to be divergent treatment and outcomes in the patients who are Black and white. Now, it’s a small sample so you can’t tell from handful of cases that it’s proof of disparity, but it certainly was a troubling pattern and it was a troubling pattern I was seeing echoing elsewhere in the hospital. The staff at that point in the early 80s, sharply divergent. Clerical staff, housekeeping staff, support staff were largely people of color and the administrative staff and intellectually powerful staff, department heads and nobody was talking about health care disparities at that point yet there they were, they were slapping me right in the face. And without knowing what I would eventually do with it I began to collect information, everything from journal articles to reading physicians memoirs in the medical library, collecting everything I could to bolster my understanding of whether there seemed to be a racial divide in medicine and certainly there was as has now been amply documented.
AC: And you documented a lot of that in one of your books, Medical Apartheid, in 2007. What was the main message, the main finding that you tried to get across to folks?
HW: My main goal was to correct the history of medicine almost completely ignored both as patients and subjects and also as researchers who have helped shape American medicine. I had already written papers and I was at a conference in Germany where there were a collection of experts in the field and I though, wow, great chance to talk to all over them about what I found and get their reaction and there was only one woman there, the rest were all men, they were all white and they all said the same thing, nothing happened to African-Americans but Tuskegee. I already knew that wasn’t true. I had already spent countless hours in the bowels of Harvard Medical School’s medical library and I had collected information from it and I knew that wasn’t true and yet the premier experts in the world were telling me that nothing had happened. I wrote Medical Apartheid because I never wanted anyone ever again to dismiss this history as being a myth. It needed to be documented, it should have been part of the canon of the history of medicine and it wasn’t so I wanted to correct that. On the way to correcting it, I found it was also very useful in terms of addressing ethical questions that have not been addressed very well in this country and to help understand and offer suggestions about African-Americans and how they might be better integrated into American health care. You know the health care system is deeply flawed and it treats people of color differently so documenting that and suggesting ways of ameliorating that is something that searching and writing that book allowed me to do.
AC: When you talk about different treatment for people of color, what does that look like?
HW: It looks like what we have today. Look at the Coronavirus pandemic. We know that people of color are more likely to be infected and more likely to have disastrous results and die and the reasons for that are really clear when you look at other infectious diseases. What happened with HIV? The same thing. What happened with Hepatitis C? The exact same thing. So people of color consistently fair worse. They don’t fair worse because they have different bodies, it’s not biological dimorphism, they fair worse because we have a health care system whose policies and practices separate them. If you look at Coronavirus, for example, our policy is to prioritize elderly people, that makes sense at first glance, they’re higher vulnerability, they’re more likely to die, but so are African-Americans and when you prioritize people who are 80 years old and older you end up working against people of color because people of color in this country, African-Americans, Hispanic-Americans, Native Americans, are younger populations, their life expectancy is shorter which means they are a younger populations, far less likely to reach that 80-year cutoff and therefore far less likely to benefit from being prioritized so even though prioritizing the elderly is something we should do, absolutely, we need a more nuanced approach to it to make sure we’re not simultaneously penalizing young populations. It’s only one example. The important thing now is with good data and excellent research we now have a numeric record of this. We have proof that we didn’t have 15 or 20 years ago.
AC: Are you finding that the conversations are a bit more open to these ideas partly because of the research that you’ve brought to the table?
HW: Yes, I think partly because of my work certainly now people are aware of a lot of these things, but I think there’s also something else happening. I think there’s also a willingness in this country to engage with our very painful past. A past that was much easier to ignore or sweep under the rug and I find that people of all ethnic groups in general seem less willing to do that. Certainly in the medical arena there’s a willingness to take head on deficiencies in the system, failures of the system and that change of heart I think it really important, it’s just as important as the data we’ve managed to collect because the data means nothing if we don’t have people who are willing to use it in order to improve the health care of all Americans not just some of them.
AC: What kind of solutions do you see that you think could help out the situation?
HW: I have a lot. One of the problems with our health care system is that we treat groups of people differently, we treat people of color differently than we treat whites and we have documented this very well now. Look at pain control. We know now just like the Victorian scientists who told the world that Black people don’t feel pain the way whites feel pain, we’ve consistently documented in 2016 through 2021 that doctors still believe this. A 2016 study from the University of Virginia documented that 50% of medical students surveyed believe that Black people don’t feel pain as whites do. 50% believe their skins are thick and they needed more radiation in treatment, all kinds of beliefs that are simply not factual. And my concern is that you won’t find a textbook that says that today, you won’t find a textbook giving that information, I hope that no lectures are telling students this. Students are learning this on the clinical floors. After a few years of medical school, you go on a clinical floor, you begin to actively practice under the tutelage of a resident or a senior physician and that’s where students begin to see that Black Americans in pain are routinely turned away as drug seeking so we have things like that, we’ve documented them, but putting them into practice, taking the information and saying, OK, we want to start treating every patient in pain the same, how do we do that? That’s going to take intention and so far we think about way we can improve teaching and reward people, but teaching is going to work well because it’s not a matter of being taught something in a textbook, it’s a matter of seeing practices and also rewards are important people have to have the right behavior reinforced, but we also need to consider now punishment. We need to start treating people of color like whites as a quality issue, a quality of care. It’s a skill that you have to learn, it’s like graduating from medical school and not knowing to treat every patient the same is like graduating from medical school and not having basic medical knowledge or skills, it’s not acceptable and we need to penalize people for it so you shouldn’t be able to graduate from medical school or finish your residency or, indeed, take home a full paycheck if you cannot meet these benchmarks. If you or your department or your institution is failing the patients that you see then there needs to be some consequences for that along with the education and support. I also think that a lot of policies that exist now operate against people of color. I’m not interested in discussion of whether it’s intentional or not or whether there’s explicit bias, implicit bias, what I find much more important is how to fix it. And one policy that comes to mind is that we’re constantly bewailing our belief that African-Americans won’t engage in clinical research as they should, but that belief is actually erroneous, that’s actually not the case, but it is true that African-Americans have been abused more by the search system so right now U.S. law dictates that you have to have a board that examines research proposals, decides which one actually gets put into practice and which ones don’t and right now you only have to have by law unaffiliated with institution and then the rest are scientists so you end up with like 15 scientists and one layperson, that one layperson can have absolutely no power and no clout in terms of swaying the opinions of the scientists there. They don’t have any leverage at all. I’ve proposed since 2007 IRBs, these boards that either approve or deny medical research, they should be half scientists and half people, laypeople drawn from the pool where you’re going to get your subjects. So if you want to research at Brand X medical school then you have half the board made up of scientists and doctors from the school and half the board made up people from the area from which they draw their research subjects. If you do that, then laypeople will have a real voice and that’s important and not only in terms of justice and ethics, but it’s also important in terms of scientific acumen because very often scientists are devising research protocols that look very good on paper but if you don’t understand certain cultural aspects of your community, it’s not going to work well or sometimes you’re developing protocols and there’s information they don’t have. If you have laypeople on the board, they can fill in some of the holes in the knowledge, not just cultural, but also sometimes medical knowledge can be improved. The example that comes to mind is one group that I’m not going to mention, but in that group they were talking about diabetes care and one research scientists said, well, a lot of Black people call diabetes sugar so be sure to use sugar in the online consent form and I thought, whoa, no, no. What he didn’t know is that for African-Americans in certain parts of the country sugar and diabetes are often two different diseases. People who have what they call sugar think they have a very mild form of diabetes and doesn’t need treatment. He didn’t know that, but if you did know that you could write a better protocol when it’s more appropriate. So it’s very important and I also think it’s very important to ban lobbyists. Lobbyists pay lawmakers essentially to pass laws that will benefit their companies, which means we’re voting in lawmakers to do our will, but they’re not doing our will, they’re doing the will of corporations who pay them. Lobbyists should be banned, they have no place in health care. I think they are distorting a great deal of health care. A lot of laws are being passed that I think are frankly hostile to the health of all Americans, Black and white, so they just don’t have a place there so those are two big things that I think need to happen to our health care system in order to improve it vastly.
AC: And what’s the focus of your latest work which is coming out now?
HW: It’s called Carte Blanche: The Erosion of Medical Consent. I’m focusing on the fact that very few people know, in fact many medical persons don’t know in 1996 two laws were passed very quietly, they became the code of federal regulations and they said if you’re an American with certain disorders or problems research can be conducted on you without your knowledge, without your permission. It’s a shocking concept. I mean, we think of the Nuremberg code, Americans tend to assume that we live in a country where no one can conduct research on us unless we give our permission, but that is no longer true. Very troublesome. We’ve already had tens of thousands of Americans enrolled in studies without their knowledge, without their permission. Some of the studies have tested modalities that have turned out to be frankly very harmful. Artificial blood was tested that way and when the results were tallied we found artificial blood was causing more heart attacks and deaths than the standard of care. Right now in this country there is a research team that is inducing hypothermia, exposure to cold that lowers your core body temperature, which is extremely dangerous, in fact, doctors call it part of the triad of death. You suffer hypothermia, your core temperature goes down, you can easily die and yet in Baltimore they’re intentionally inducing it in people and they’re doing it they say in order to see whether extreme cold might help them to survive. It doesn’t seem logical to me. If you have read about hypothermia at all, it seems quite illogical. I couldn’t understand it and I still don’t but when I read the protocol, the description, I had a eureka moment because I discovered that the principal investigator has financial interests in it. If the study is successful, he will make money because he had patented some of the devices that were being tested and I though, oh, perhaps the fact that he will make profit is distorting his own risk-benefit calculation. So, some troublesome trends in this country being exacerbated by war and exacerbated by the pandemic because urgency adds to the feeling among many experts and frankly all of us that we have scarce resources, we have dwindling manpower and time and it’s easier to cut corners, it easier and quicker and cheaper to take risk when you don’t have to ask peoples’ permission. That doesn’t make it right, it’s still wrong, but it’s now the law in this country so I’m deeply concerned that it’s happening and I’m even more deeply concerned that people seem not to know about it which is why I wrote the book.