Health in All Matters podcast
Series 2: If Not Now, When? | Racism: A 400-year public health emergency
Episode 4: Racism & Public Health: Tuskegee to COVID-19
Airdate: December 3, 2020
Duration: 24:00

[Clinton from White House, 1997]

The United States government did something that was wrong — deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens.

Michael Joyce: This is President Bill Clinton in the Spring of 1997 making a formal apology for the Tuskegee Syphilis Experiment that ran from 1932 to 1972. The U.S. Public Health Service study of roughly 400 black men with syphilis enticed enrollment with the offer of free medical exams, free hot meals, and free burials. A few years into the study, penicillin – an incredibly safe and effective treatment for syphilis – became available. But it was deliberately withheld from the men of the Tuskegee Study, in order to study the natural history – the progression — of the ravages of syphilis. While other syphilis sufferers around the country, including Al Capone, the ruthless mobster responsible for dozens of murders, got penicillin and were cured, the public health researchers in charge of “The Tuskegee Study of Untreated Syphilis in the Negro Male” — as it was formally known — provided only aspirin and vitamins and watched men die.

[Clinton continues]

To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry. (Applause)

Thomas LaVeist: I think what President Clinton does here is appropriate, and the words are appropriate. What I would describe as a full-throated apology.

Michael Joyce: This being audio Thomas, our listeners don’t know who you are and what you do. So why don’t you introduce yourself.

Thomas LaVeist: My name is Thomas LaVeist and I’m Dean of the School of Public Health and Tropical Medicine at Tulane University.

Michael Joyce: And I’ll follow suit: I’m Michael Joyce and I’m the host of this podcast — Health in All Matters — from the University of Minnesota School of Public Health.

Thomas LaVeist: I’m just not convinced that the President — or perhaps any President really — has the ability to speak on behalf of the entire nation in this way; unfortunately because the history of this country really has been a battle between two visions: one vision is to expand rights and freedoms to every person living in the country. The other vision is to make those rights and freedoms only available to a smaller segment of the population, and to maintain a hierarchy.

Michael Joyce: There are many carefully chosen and powerful words in that apology like: “equality, integrity, and anguish, silence, shamefulness.” Is it one of those words or another word that comes to mind when you reflect on the legacy of the Tuskegee Syphilis Experiment?

Thomas LaVeist: I think it was shameful that that experiment happened. Especially when the scientific knowledge that would be gained from it was so insignificant. We already had therapeutics to treat syphilis. There was no valid scientific reason to believe that African-Americans would respond differently to syphilis or any other disease. But I think the Tuskegee Syphilis Experiment was shameful.

Michael Joyce: So Thomas: In this podcast we want to move from Tuskegee to the present — this accelerating pandemic — and explore how racism has impacted public health, and how public health has impacted racism. Certainly the Tuskegee Experiment is a devastating example of the latter.  So I think we need to clarify two things. First, what you see as the mission of public health … and second …. Look at what historically has been the relationship between public health and Black, Indigenous, and other people of color. Let’s go to that first question; as you see it what is the mission or intent of public health?

Thomas LaVeist: In its most fundamental form I think public health is about health equity. It’s about preventing disease. It’s about understanding causes of disease. Understanding risk. And educating people how to best mitigate those risks. And it’s about ensuring that the benefits that we gain from the science that we do in public health are benefits that apply to all people in the population, and therefore equitable in that it should be benefitting everyone.

Michael Joyce: So other than the horrific example of Tuskegee, historically what’s been the relationship between public health and Black, Indigenous, and other people of color?

Thomas LaVeist: Yeah, I think that is a really important question. But I do think that the Tuskegee Syphilis Study is over-burdened in terms of being viewed as the reason for the mistrust that pervades among African-Americans and other groups as well. Tuskegee is clearly an example of  an outrageous abuse that occurred but it’s just one example.

What I think is more common and fueling this mistrust is contemporary, untrustworthy behavior. People go into the healthcare system, they’re treated discourteously, they have a bad experience, and that happens disproportionately to people that are from marginalized populations.

And I think if we place too much burden on Tuskegee as a singular example, we create a narrative that, “Well everything was fine, and then we did this Tuskegee thing, and now everyone mistrusts us.” But that really isn’t an accurate narrative. The accurate narrative is there’s been a lot of untrustworthy behavior over many years, in fact centuries, and Tuskegee is yet another example of that, and that’s why the mistrust exists.

Michael Joyce: One of my colleagues, Kumi Smith, an epidemiologist here at our School of Public Health, brought up an interesting point. She said: “The United States has chronically underserved communities of color, and then turned around and over-scrutinized their health. Especially African-Americans. What do you think about that quote?

Thomas LaVeist: I think that’s exactly right. And when you look at where we are now in the COVID-19 pandemic, we’re about 8 to10 months in. But as the pandemic began to really rage in this country, there were delays in access to testing. Right? And those delays were particularly acute in the Black communities of this country.

And now as we’re working towards development of a vaccine, and surveys are showing tremendous mistrust of this vaccine, there’s a lot of talk about how we will prioritize who gets the vaccine first. And there’s a lot of talk about African Americans and other communities that have been disproportionately impacted, getting the vaccine first. Which is a logical way to think about this, but it also feeds into a narrative that generates enormous distrust.

Because then the perspective is: When we were trying to find out who had the disease, and we needed testing, they didn’t come into our communities and test us. But now when you have a new vaccine that you want to deploy and still don’t know how safe and effective it’s going to be, you want us to be first in line to get it.

Michael Joyce: So what HAS changed and what has NOT changed when it comes to public health as seen through the lens of race and racism?

Thomas LaVeist: So what hasn’t changed is that when these sorts of events occur — like this pandemic — that African Americans are disproportionately impacted. Right?

What has changed, however — especially amongst health professionals — is there is more of an awareness that race plays an important role in the health care that we provide. We are expecting and looking for disparities. We are attuned to it and understand they exist.

I do think that increasingly people are moving away from the narrative that racial differences in health are about biological and genetic differences. I do still hear it now and then, but I’m hearing that less. And I think we are moving toward a more sophisticated and nuanced understanding of why the disparities exist.

[Music Interlude #1]

LaMar Hasbrouck: I really firmly believe in the quote: “A problem well framed, is a problem half solved.

Michael Joyce: This is Dr. Lamar Hasbrouck. He’s a Chicago-based physician who’s worked in public health at the local, state, federal and international levels – in both the private and public sectors.

LaMar Hasbrouck: So we’ve framed it from the easy part in documenting ‘yes, we’ve studied the health gaps in everything from mortality to morbidity to hospitalization, etc…. We’ve done a great job on that for perhaps 3 or 5 decades. Check that box.

Now I think public health as a field has shifted to looking at social determinants of health and we’re trying to look at some of the drivers, some of the roots of some of those health inequities.

But I think this is not rocket science. I think what we need to do is consult the real experts. And when I say ‘real experts’ I really mean the community members. At some point you have to go to the communities and get them involved in a real equitable way so there’s involvement, there’s partnership, there’s shared decision-making, shared ownership, and really the uncovering of the real next wave of knowledge which is: Why is it that — assuming you have access, assuming you have understanding, assuming you have awareness of these health differentials — what is the hangup? What is the secret sauce for getting you to move from this behavior to that behavior?

Michael Joyce:  I’m guessing we don’t know the secret sauce, but what are some of those hangups?

LaMar Hasbrouck: I’ll give you just a brief example. I was at the AMA and got a chance to be a senior strategist looking at hypertension among African American men …

Michael Joyce:  AMA being the American Medical Association and ‘hypertension’ being high blood pressure.

LaMar Hasbrouck: … and what we learned is that in terms of the awareness level (“I do have this diagnosis”) when you compare them to white men it’s the same. It’s very high. About 80-90% of those with hypertension, know they have it. In terms of being on medicine, it’s very high. About 80-85%.

But when it comes to adherence — taking it as regularly as you should — that’s where it drops off.

Michael Joyce: That is to say the adherence — or compliance, as it’s sometimes called — was lower for the African-American men.

LaMar Hasbrouck: So the question is: Why would a population that knows about their disease, has access to healthcare, has been prescribed medication …what is the problem or the conundrum with the adherence part?

So that’s where you have to get those patients really involved and ask them: What is it? Is it money? Is it side effects? Is it something cultural? So that’s an example of how we need to get down to the next level of really understanding “the roots of the roots” as I call it.

Michael Joyce: In the case of high blood pressure in African-American men did you find an answer to that question?

LaMar Hasbrouck: We found some differences in understanding. So this brings in the question of health literacy. Yes, you diagnosed me. Yes, you gave me a prescription. Yes, you talked to me about it. But did I really get all of my questions answered? And getting back to Tuskegee: Do I really trust you that you have my best interests involved?

So those are the types of things where you get those deeper, more nuanced answers that can really help you to solve some of these problems.

Michael Joyce:  Let’s take another problem, an ongoing challenge: COVID-19 and vaccination. I realize vaccination on its own won’t solve the pandemic. And I realize the effectiveness of the vaccine is a big unknown. But let’s say we do get one next year: I’m very interested in the barriers to reaching people of color when it comes to the vaccine question.

LaMar Hasbrouck: I am as well, and I’ve actually written an Op-Ed piece that said  a vaccine won’t save us for a couple of reasons. One, folks don’t like vaccines. Only 4 in 10 Americans even avail themselves of vaccines. When we had the last pandemic, H1N1, only 3 out of 10 availed themselves, and they were in the high risk group. So we don’t like vaccines!

The other reason is the trust issue. And this harkens all the way back to Tuskegee. There is a healthy measure of distrust. And when you talk about developing a vaccine at warp speed, I think that if you were to get your car serviced, and your mechanic told you I’m going to fix your brakes at warp speed — you might be a little bit hesitant.

Michael Joyce:  Time is one thing. And money is another. The National Institute on Minority Health & Health Disparities — NIMDH — is just 1 of 27 centers under the umbrella of the National Institutes of Health, or NIH. And I guess the budget for the NIMDH was around $335 million this year. That’s just 0.8-percent of the total NIH budget. Which this year was around $42 billion. Is that an adequate investment?

LaMar Hasbrouck: I like the way you frame the question as an investment. Because I would say that public health champions and public health professionals around the world would say there should be an ethical imperative. There should be a social contract with the community that says: We value health and the health of everyone.

So I would say when you’re looking at the cost conundrum, what we’ve learned over the years and many decades is that better more equitable health leads to stable, healthy, more vibrant communities. And economically thriving communities. So at the end of the day when you look at the ROI, typically when you’re investing in public health there is a huge ROI.

Michael Joyce:   … “ROI” being return on investment …

LaMar Hasbrouck: Yes … but you disinvest or underfund it, what we see is there’s a huge cost. Because all the preventable things upstream could have been dealt with, and now we have to deal with them in the health sector. And public health and health care are different — they overlap — but it can be looked at as part of a continuum.

We’d rather spend 18-20% of the GDP on healthcare now, rather than invest more wisely in the upstream preventive and public and population health measures. So it really can be looked at as an investment. And my strong opinion is that it’s a huge under-investment at this point.

[Music Interlude #2]

Michael Joyce: Upstream prevention or focusing on the root causes of our health problems — not treating them once they’ve developed — is one of the key distinctions between public health (which is NOT well-funded in this country) and our rescue-oriented medical industrial complex (which is funded to the extreme). If you think about it, two things jump out. First, the funding priorities seem backward. Second, many folks don’t have a clear sense of what public health is or does.

Ngozi Ezeki: There’s different ways that people can look at it. Some people are just, “Yeah, OK, ‘outbreaks,’ I get that part.”

Michael Joyce: Dr. Ngozi Ezeki is the Director of the Illinois Department of Health.

Ngozi Ezeki: But I think there’s so much more outside of that, that people don’t appreciate. And the role of public health is expanding as we think about how to have people achieve their optimal health. It’s not just preventing outbreaks. And it’s not just making sure there is access to traditional medical or mental health care.

But it’s actually being able to ensure that the barriers to care are worked on. And so trying to break the foundations of racism that make it more difficult for people to achieve their optimal health. That’s actually the very hard, foundational work that public health is trying to delve into.

So I think we are moving in the right direction. Public health is always going to be right alongside that movement. We’re happy to lead. We’re happy to partner. We’re great collaborators. So I think we’re going to see some exciting changes in the coming years.

Michael Joyce:  And as we’ve reported before, COVID-19 is not only disproportionately impacting communities of color, it’s also exposing both vulnerabilities and opportunities in our public health approach.

Ngozi Ezeki: Right now it’s COVID, COVID, COVID! So funds are being allocated for new things. And you realize in the heat of the moment: Wow! There are many things that the public health department is missing. We really don’t have enough epidemiologists. We don’t have enough statisticians. Even the ability to mine all of our data to put it out for the public.

Right now the money is there to do all of these things. But as we’ve seen in other situations, other emergencies, as we get a little bit away from it, you put COVID in the rear view mirror, and then they start pulling away the money that you would be using to rebuild the foundation, to restore or create a public health department that would be ready in advance, instead of trying to struggle and get things together in response.

Michael Joyce: And this brings up the topic of solutions. As with every episode, we turn to the people you just heard from and ask them what steps need to be taken now. In this case, how can public health be part of the solution when it comes to racism, not part of the problem as it was with Tuskegee?  What is doable and will have measurable impact?  Here’s Dr. Thomas LaVeist who opened this episode.

Thomas LaVeist: We haven’t resolved the problem yet. We certainly do still have the disparities. I think for those of us in academic public health, there’s more for us to do as well. At this point it is a fundamental core competency of being a public health professional to have an understanding of health equity and why we have these inequities.

I don’t think you are competent to work in public health if you haven’t been trained to understand health equity. And I think it’s unacceptable that any school of public health even be accredited if they’re not ensuring that everyone that goes through that training understands it.

And I think in the 21st century if we haven’t moved the health equity course at our schools from the rank of the elective courses and into our core curriculum, I think we’re doing our students a disservice, because they are not going to be prepared to work in public health in the 21st century.

Ngozi Ezeki: I think I would start at the elementary or high school level implementing programs that build a pipeline for the public health workforce. Where we are creating internships and externships, and  spend the day at the public health department with our middle schoolers to expose them to all the myriad paths and routes that encompass public health. To build that interest in it so that people 10 years down the line are thinking: ‘I want to go into public health. I want to be a public health leader.’

You know public health often works in the shadows. I think we’ve been put in front now, so we need to leverage that to build up that pipeline and build that diverse workforce that is so key to making sure that policies and practices and grants that we put out are going to improve the situation of all people in our state.

LaMar Hasbrouck: There’s a lot of things we can do better. It starts, I think, with partnering with the communities that are affected. I think it starts with better advocacy. Elected officials and administrators need to address the compensation issue for public health practitioners. They need to address the resource allocation issues.

And I think another thing we’re not doing well is looking in the mirror. We’re not smartly partnering with our sister sector, which I would call healthcare and healthcare delivery.

So I think if we can partner with them and understand that there is a continuum from what happens in the neighborhood, in the home, and in the community to what ultimately shows up in the physician’s office — if we can partner better there so it’s a continuum, not two independently acting sectors — I think we could do better there as well.

In other words, public health has to have a renaissance moment.

[Closing music]


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