Transcript
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The event opens with acknowledgments of the Tuskegee study commemoration and remarks from President Biden about racial equity, historical injustice, and restoring trust in medicine.
Speaker A
Okay, so, good afternoon, everyone.I love call and response.I'm glad you actually responded and said good afternoon.Thank you for doing that.I.Words cannot express how excited I am to be here.Recognizing the United States Public Health Service study of Untreated Syphilis in the Negro Male in Tuskegee and Macon County, Alabama, 1932-1972.Today will be a day of reflection, remembrance, hope and joy.Today, I hope we not only provide answers to your questions, but that we also pique your curiosity and your desire to learn more, specifically on ethics and equity.To begin our program, I would like to introduce President Joseph r. Biden, the 46th President of the United States.
Speaker B
Thank you to the CDC and all of you for recognizing the 50th anniversary of the end of a grave, grave injustice.Government doctors tricked hundreds of rural black farmers into joining the Tuskegee syphilis study, shattering trust in medicine in ways that still endure.It took a brave whistleblower to end the experiment 50 years ago, but it took another 25 years before our government apologized under President Clinton.When it did, one of the study's last survivors said, and I quote, it's never too late to work to restore faith and trust.End of quote.
That's the work of America.Our history has always been a tug of war between the ideal that we're all created equal and the harsh reality that racism has long torn us apart.At our best, the American ideal wins.But to heal, we can't forget the past.On my first day as president, I signed an executive order to advance racial equity across the board to ensure the promise of America for all Americans.
Over 90 federal agencies are taking over 300 actions to close the racial gap in wages, wealth, health, and so much more.And it matters.Restoring faith and trust is the work of our time.So thank you.Thank all of you for being partners in this work.
Secretary Becerra reflects on the importance of remembering Tuskegee while describing HHS efforts to reduce disparities in vaccination, maternal health, and access to care.
Speaker A
Thank you, President Biden, for those important remarks.I would now like to introduce the 25th Secretary of the United States, Health and Human Services, Mr. Javier Becerra.Secretary Becerra.
Speaker C
Okay.Well, I. I want to first say hello to everyone who's here.Dr. Smith, Director, and Dr. Walensky at CDC.Thank you all very much for letting me participate.I saw the President on screen.I couldn't hear what he was saying, but I saw him on screen, so it had to be good.And I would simply say this to each and every one who is participating today, that it is good to commemorate.
It is better to never get there.And so as much as this country has done phenomenal work in trying to redeem some of its past activity.And that's what great countries do and should do.And we still have work to do.And that's why at the Department of Health and Human Services, along with cdc, we are intent on making sure that as we commemorate 50 years of the study that was done and affected Americans in ways that no one would like, we want to make sure that we remember what happened in Tuskegee, at Macon county in Alabama back in the 1900s.
And here's what I will tell you.In our work at hhs, we know that we can undo much of what happened.We can't undo all of it.But that is why today I can tell you that when we found out, when we came into office that we saw that the number of Americans who were being vaccinated was too low, especially in our sometimes forgotten communities, in some of our communities of color, we didn't wait for folks to come to us to get the vaccine.We went to them.
And I'm proud to tell you that within a year, by the beginning of this year, we had erased the 10 to 15 point disparity in vaccine uptake by black Americans and Latino Americans compared to white Americans.We were very proud of that.That's why just in the last couple of weeks, we announced that we're investing another half a billion dollars in trying to reach people for the most recent and current version of the vaccine that needs to be administered to Americans.And we're going to use that money principally to go after folks who are often left behind again because we see the disparities growing.That is why at hhs, we are continuing the work of reaching out to Americans, female Americans who are in the process of giving birth or just given birth, because we know the maternity mortality morbidity rates in some parts of our communities, especially the black and Native American communities, are way too high.
And so that's why we've instituted a program to reach them now.We are now encouraging every state to move towards providing a woman with not just 60 days of postpartum care under Medicaid, but 365 days.And so far, more than half of the states in this country have taken us up on that challenge to do exactly that.We're going to continue to reach out, not because it's important to do it, but it's because it's the right thing to do and we owe it to people.And that's the way you do not forget what has happened in the past.
And so I want to thank each and Every one who has made it possible for us to continue to move forward.But it is important to never forget and never let something like this happen again.At hhs, we will continue to make progress to make sure that as we commemorate the 50th anniversary, it is clear that at HHS we intend to move forward the way we should with everyone.So I want to thank Director Walensky and everyone at the CDC team and everyone who is part of this commemoration for allowing me to participate.Let's move forward and let's never forget.
Thank you very much.
Dr. Walensky honors the 623 men and frames the commemoration around ethical public health practice, structural racism, and the need to remember the study's legacy.
Speaker A
Thank you so much for joining us.Secretary Vasetto, those are the perfect words for such a perfect moment, is this.
Speaker C
Thank you.
Speaker A
Now, please allow me to introduce our very own Dr. Rachelle wolinsky, the us cdc and agency for toxic substances and disease registry director.Dr. Wolinsky.
Speaker D
Thank you, Dr. Smith.And thank you, President Biden and Secretary Becerra for adding your voices to today's event.It is my honor to be in this auditorium with so many distinguished guests, indeed so many heroes.Thank you for joining us on this somber day as we reflect on the history of the moment while honoring the memory of 623 African American men who were subjects of the study and acknowledging their pain and that of their families.Mistakes have been made, grave injustices have been done.
And we cannot let our country's complicated history follow us into the future.There can be positive change.There can be healing, and.And there can be progress.Almost 50 years ago, the National Research act was signed into law requiring that research protocols meet certain ethical standards.
And in 1997, President Bill Clinton apologized on behalf of the nation.In just a few minutes, you will hear his words as he admonished the nation to end the silence, to stop turning our heads away.Indeed, we are not turning our heads away from all of the health threats that disproportionately impact people of color.Health threats driven by structural factors, by racism, discrimination and historical disenfranchisement.Factors that can have lifelong negative consequences on mental and physical health.
As the Secretary mentioned, shortly after becoming CDC director, I declared racism a serious public health threat that directly affects the well being of millions of Americans and as a result, affects the health of our entire nation.It was important to me to bring my passion and advocacy for health equity to my role as director of the agency charged with protecting the health of everyone who lives in this country.In this, I'm joined by public health partners across the nation and by all of you.I'm grateful for everyone here for your part in the important work of keeping the memory and the legacy of these 623African American men alive.Thank you for acting to be sure their suffering and their sacrifices, their families, their stories and their history are never forgotten.
To be sure that we remember every day the absolute requirement to support ethical public health research and practice.And with that, I will now turn the podium over to Dr. Smith, who will introduce our first panel.
Speaker A
Thank you very much.
The panel begins by centering the men and families affected by the study, clarifying the study's true name, and explaining why historical accuracy matters.
Speaker A
All right.Thank you so much, Dr. Walensky, for your gracious words of welcome.Now for the moment you have been waiting for, the discussion.The discussion is broken down into acts.Each act will build upon each other and dig deeper into not just the past, but will take us into the future.
So let us begin with Act 1.
Speaker E
Act 1.
Speaker A
Act 1 is history.This act will lay the foundation for today.Please welcome Mrs. Lilly Head, President, Voice for Our Father's Legacy Foundation.
Dr. Jim Jones, author of Bad Blood.Dr. Susan Reverby, author and professor, emerita in the history of ideas and Women's and Gender Studies at Wellesley College.Dr. Paul Lombardo, regents professor and professor of Law at Georgia State University's College of Law.And this act will be moderated by Dr. Paul Young, Commander of the US Public Health Service and Regional Associate Director for the Americas Region and Kenya.
Speaker F
Good afternoon.Thank you all for joining us here today.To our panel members, welcome.Now, you've seen the agenda.We have a very tight schedule, so we're going to do our best to stay on time.
Now, we had hoped to have seven acts with us today, but unfortunately, due to time constraints, we will only have four.Here in act one, we would like to discuss the history.Mrs. Head, I would like to start with you first.Can you tell us a little about those most impacted by the study?The men and their families.
Speaker G
Thank you.And I would also like to thank Dr. Walensky, Dr. Smith and everyone here at CBC who had a role in planning and preparing for this program.Thank you so very much.
The men, they were all human beings.They were sons, fathers, grandfathers, uncles, cousins, neighbors, pillars of their community, pastors of churches, church leaders.
They were our family providers.
They were the rocks of our families.
They were loved and they loved.They contributed to society and our country.
And they were denied, deceived, lied to, regarded as less than and treated inhumanely and used as lap guinea pigs.They were trusting, believing my father,
Speaker A
along
Speaker G
with 622 other loving men were in this study.And they were human beings and they were loved.
Speaker F
Thank you for that reflection.
Speaker H
Powerful words.
Speaker F
One more question for you before I let you go.Now, most of us refer to the study as.As the Tuskegee Study.What is the true name of the study?What does it mean?
Speaker G
Tuskegee Syphilis Study, as it is commonly known.And Tuskegee Experiment, as it is commonly
Speaker I
known,
Speaker G
is misceaving, treating the name of the study and of the men.When you place Tuskegee in front of the study, it gives Tuskegee the ownership.
It leaves a scar on the town of Tuskegee in a Macon County.Tuskegee we're not.Is not the owner of that study.It is the United States Public Health Service Study of Untreated Syphilis at Tuskegee and Macon County.That's very important, and we want to change that.
That's part of moving forward, and that's part of telling the whole story.You might see Tuskegee, your syphilis study, but it doesn't tell you what the study was all about.When you place untreated in front of that, it tells you the deception, the deceit, and the purpose of that study from the very beginning, untreated.So we need to be cognizant of that, and we need to tell it.There's nothing wrong, as Dr. Wielinski saying, and not allowing our past to lead us into the future or to be a part of our future.
But it's important for us to realize that we must revisit our past in order to move forward for the future so that we don't make the same mistakes and we can improve every day in what we're doing.
Dr. Jones explains how archival records revealed the study and how his research connected with legal efforts to expose and challenge the experiment.
Speaker F
Thank you, Ms. Head.Dr. Jones, now your question may sound a little strange to the audience, but can you tell us about the importance of record management and why it is integral to the work you did?And we all receive record management training every single year.And I think some people don't understand the importance of it.But can you help us understand, for this study and the work that you.
You conducted, why was record management so important?
Speaker J
In the fall of 1970, I was a graduate student at Indiana University getting a PhD in Social and intellectual history, and I went to the National Archives to do research on the Social Hygiene movement.Record Group 90 of the US Public Health Services Division of Venereal Diseases.Those records are in the National Archives.As I plowed through that record group, everything I saw in it spoke either to the prophylaxis of syphilis or the treatment of syphilis, except a number of letterboxes about an untreated syphilis program in Macon County, Alabama.
I looked at some of that stuff and I thought, you know, awful, terrible.But it wasn't my first rodeo.I'd done quite a a bit of archival research at that point and I'd seen other examples of non therapeutic human experimentation.What I didn't know was that the experiment was still going on.I was, after all, in an archive.
When I do archival research, I always carry note cards in my shirt pocket and I write down a topic if I think it might warrant further investigation.Fast forward to two years.I've just received my PhD.I'm on my way to Cambridge, Massachusetts to accept a postdoctoral fellowship at the Harvard Medical School to study medical ethics and more history of medicine.And in my ear, like a robo gnat, are Gene Heller's four hard hitting articles that broke that story.
When I got to Cambridge, I told the directors of the program, I know you gave me the fellowship to do this, but I want to do that.I want to write a book on the Tuskegee syphilis experiment.And what became clear instantly was that they didn't care what I did as long as I got out of their office.And I learned an important lesson.The relationship between a postdoc and chaired professors that between a dog and a fire hydrant, you know, just get out.
So anyway, at that point I called my friend Albert Liesinger Jr. Who was the deputy director of the National Archives.I called him because the papers said that the Justice Department had issued an order sequestering all material and that they would do their own investigation.This was Richard Milhouse Nixon's Justice Department.And in a word, I didn't trust it.So I called out and asked him if I could come and find the records.
He said, we can't find them.They've been moved out to Suitland, Maryland, to the Federal Records center, and we've got guys looking for them now.I said, well, can I come and help?He said, jim, the stuff is sequestered, so I do my best.Joan Rippers.Ow, ow.Can we talk?My hands are flying over the phone.He says, okay, okay, okay.He says, get your butt down here.
He says, I'll call the guys out to Suitland.He said, they're all my pups.I trained every one of them and we're going to get you into those records.So I drive down the next day, I'm in those archives at Suitland.It looks like the great room from Raiders of the Lost Ark.
You know, you can't imagine how large it is.But it took days because the records had gotten disorganized and after days, I finally figured out the pattern of the shipwreck and was able to pull four boxes of those records together.Al arranged for me to have his staff stamp every one of those with the stamp signed so that those documents would be admissible in a court of law.Now fast forward.Okay, I have those four boxes of documents.
I'm following the story in the paper, and I see that Fred Gray, the great civil rights attorney and icon of the civil rights movement, has that case and that he's having evidentiary problems.So this was, what, two years after I started to work on the book?So I called cold, called Fred out of the blue, told him what I had.The next day, he was in my house, and we shook hands at the door.He went right by me to the table where I had the boxes out.
There was a bowl of fruit.He grabbed a banana, started peeling, and said, well, come on, come on, Jeremy.So I knew then and there that Fred and I were going to be buds, that this was going to work.We were going to be friends.So Fred asked me then to help him going forward with additional research.
We went back to Frank Johnson.The judge got a court order for the CDC to open up its materials where there weren't supposed to be any.And long story short, we came out with several filing cabinets of documents on the Tuskegee syphilis study.So that's how my book started, and it's been my privilege to have worked on it and to have shared some time with Fred Gray.Thank you.
Dr. Reverby discusses intersectionality, the roles of Black professionals, and the complex ways race, class, and gender shaped the study's continuation.
Speaker F
Thank you, Dr. Jones.Dr. Reverie.Picking up where Dr. Jones left off at, as he mentioned, he brought us the book Bad Blood, and you two were very instrumental in telling the story behind how the study happened.Can you expound upon how race and class played a role in this study?
Speaker K
My books on this came out 20 and 30 years after Jim's initial book, and they focused a lot on what we in the academy call intersectionality.That is, the linking of class, race, gender, that all come together in this study.And one of the ways to think about this is When I interviewed Mr. Shah, he said, one of the men in the study who was quoted by President Biden today, Mr. Shah said, we did this to help our families.And I kept thinking, if we had ever had national health insurance before that, and if we had had decent public health in Alabama and across the country, none of these men would have gotten sick and they would have been able to pay for care.They wouldn't have been subjected to being tricked into accepting the study.
So that in part explains why the men were involved and to think about the public health service people.I find the quote from public health physician John Cutler the most useful, in which he said in a television interview, quote, we have no compunction about sending our youth away to war when it's in the national interest.So it was in the national interest to get the greatest information you could to provide for the entire community, black and white.So John Cutler and the people in the PHS thought they were generals in a war on syphilis in which they had the right to order people to die.I think that explains it.Now, I've been given the even harder task here to try to explain the role of the black professionals in the study.And I'll try to do this briefly.Dr. Eugene Dibble, who ran the study pretty much for the public health service in Tuskegee, he was their go between, died in 1968, four years before the study was widely known.
And so no one got to ask him these questions.I think of it as his dilemma for us in trying to understand how he did this in the face of the racism that left him with very little money.
A small hospital that was supposed to be for students but in fact served, because of segregation, the entire county area.Dibble, of course, knew what was going on.In a letter between Dibble and Robert Moten, who was the president of Tuskegee institute, Dibble explained that the public health service wants to study the effect of syphilis is having on people who have been untreated over a period of years.He said, our hospital and Tuskegee will get credit.Goes back to what you said for this piece of research, and the results of this study will be sought after the world over.
Personally, I think we ought to do it.So the question, of course, is why?
Speaker L
Right.
Speaker K
And I argue that Dibble was both what we would call a science man and a race man.That is, he cared about the science.
He did think the disease might be different in blacks and whites, leading, perhaps he might have thought for the need not to treat at the later stages of the disease if the science proved it was not necessary.He worked all his life to bring better clinical education to rural physicians and to the community he served.But he was also what we called in those days a race man.That is, he cared about what was happening.He lived in Alabama, where lynchings were still frequent and where efforts to humiliate or to him were constant, and the conditions so difficult that at one point, he told Moton, the floors were falling in at the hospital and they had to be fixed.
He understood the link between racism that caused the disparities and the need for more science on what was then called racial susceptibility to disease.He was part of an older generation who believed in careful triage in his search for equality.And we are left to speculate exactly how he continued to justify the study well into the post penicillin and civil rights era.More focus, of course, has been on nurse Eunice Berdell Rivers Laurie.She in fact, gets her own chapter in Jim's book, who served as the go between the men and their families and then the institute and the phs.
Jim, when he interviewed her before she passed, said she told him, quote, we should have told those men they had syphilis and God knows we should have treated them.But she was still alive then when the study ended.So many have focused on her, expecting somehow this lone black nurse to make it stop.She was friends with many of the men, saw herself as helping them, and clearly understood what the study was about.I have argued that her caring as a form, so that she saw her caring as a form of treatment, doing what she could for families who had so little.
In her various voices when she was interviewed, she both speaks about the power she had and other times she just retreats to talking about taking orders in this brief time.I want to make an argument that Jim and I will forever, I suspect, disagree about since he met her.I did not.I think she helped get some of the men out of the study.And here's the evidence briefly.
A nurse at Tuskegee who was the director of nursing at the institute and had been her student, told me she told some of the families to take the men to Birmingham, where the rapid treatment centers were set up in the 1940s to get treatment behind the back of the study.Another PHS doctor, writing to his superiors in 1970, said he was beginning to doubt nurse Laurie's conflicting loyalties and described a man who was one of Rivers friends who had received a full course of penicillin at the local health department.Careful examination of her language, hems and haws a bit about whether she had actually stopped the men from treatment.And in her last oral interview, she said, as I go through the records, I see where various ones got to Birmingham for rapid treatment, and they were still in the study.So I think in the context of the institute's culture, she made both racial accommodation and hidden resistance.
And we will never really know exactly what happened.But the Public Health Service admitted by the end of the Study that it was a study of undertreated for some of the men, not no treatment.The story really is one about the arrogance of science, the terrible consequences of racism that puts people in horrendous situations, the use of class power and the assumptions about gender all together that made the study possible.And when I spoke to the, to the families a number of years ago, I said, your families lived, lived and wandered in a medical desert for 40 years.And I promise you that we will never forget them and they will honor
Speaker L
their
Speaker K
sacrifice by going forward into trustworthiness.
Speaker A
Thank you.
Dr. Lombardo traces the study's roots in older racist medical ideas and eugenic theory that framed Black patients as biologically different and inferior.
Speaker F
Doctor Lombardo, as our final speaker for this act.In the past, you mentioned that 19th century racial medicine never really changed going into the 20th century.Can you briefly elaborate on your statement?
Speaker M
Yes.I think if you came here knowing nothing about what happened in the study, you would at least by now know that race looms over every conversation about it.
And that it's certainly true that race conscious ideology influenced the way the study itself was structured and organized.That ideology was not new.It consisted of racial attitudes that came from two centuries of slavery that were reanimated after the Civil War during the Reconstruction era.And it was commonplace among physicians both in the late 19th and the early 20th century to assume, as we've already heard, that infectious diseases like syphilis were endemic in blacks because of racial differences.The then prevailing belief in white supremacy among the general public was also openly embraced in the medical profession.And it was asserted that people who were formerly enslaved, as well as their descendants, could not succeed without the support of a white master class.The inevitable result of emancipation, these people said, must be continued degeneracy and eventual extinction of the entire race.It is very easy to document these sentiments in medical journals following the Civil War.
They continue to appear well into the 20th century, not just in the south, but in journals from as far away as Chicago or New York.Now, the doctors who eventually ran the study had learned this brand of what has been called racial medicine.
And it had evolved beyond a kind of medical folklore and really found scientific validation in the early 20th century in eugenic theory that legitimated long standing medical prejudices.So eugenics reinforced and updates the medical racial medicine of the 19th century.Doctors who had been taught eugenics included these so called racial distinctions as part of their diagnostic expectations that were passed on from generation to generation.And what they called the germplasm, what today we would probably call DNA.There exist certain inherited biological differences, they said the higher rate of syphilis and gonorrhea among quote, the Negro was caused by indiscriminate sexual indulgence, low regard for personal hygiene and an immoral tendency, all of which were part, as they said, of the greater problem of heredity.
So one goal of the Public Health Service work was to prove the biological basis of racial difference by documenting race linked pathology which was consistent with prevailing eugenic theory.This new quote science provided a vocabulary for casting long standing prejudices in a new scientific voice.And it reinforced a medical tradition in which the diseases of black patients were linked to racial differences.
The discussion shifts to the study's exposure, beginning with Jean Heller's reporting and the broader moral hypocrisy surrounding the government's actions.
Speaker F
So I invite Dr. Smith back up to introduce act two.
Speaker A
You gotta come this way.Act one.
All right, thank you.Act one discussions for that historical discourse.
Please allow me to introduce Act 2, Never Forget, which will frame the end of the study through the national apology.Please welcome Ms. Jean Heller, author and journalist Dr. Jim Curran, Dean Emeritus of Emory Rollins School of Public Health.Dr. Dixie Snyder, former Chief Science Officer in the CDC Office of the Director, Mr. Gray.Mr. Fred Gray, President of the Tuskegee Human and Civil Rights multicultural center, and Dr. Vanessa Northington Gamble, University professor of Medical Humanities and Medicine, Health policy and American Studies at George Washington University.Unfortunately, Mr. Ben Johnson will not be able to join us today.
This act will be moderated by Ms. Jo Valentine, Associate Director of Health Equity and CDC's Division of Sexually Transmitted Disease Prevention.
Speaker G
Let's see.
Speaker A
Jean, can you hear us?
Speaker N
Yes.Can you hear me?
Speaker A
We can hear you perfectly.
Speaker N
Oh, isn't technology wonderful?Except when it isn't.
Speaker O
Thank you, Tamika.
Speaker A
All right, I'm going to stay here for just a second.Just move on.
Speaker O
Good afternoon, everyone.And it's a great privilege and a great honor to be able to be the moderator for this session.I keep thinking, oh my God, I'm in the room with historical figures, knowing that I'm about to become a historical figure myself.But it is really an honor and a privilege and thank you all for your attendance.For the sake of time, I'm just going to jump right in to the questions and we're going to start with Ms. Jean Heller.
So, Ms. Jean Heller, you were the reporter who broke the story.Can you tell us about how you learned about the study and what were your thoughts when you first learned about the study?And tell us a bit about where the story ran.
Speaker N
Oh, I can answer the second question or the last question first because it is easy.It's one word everywhere.
There was no, I don't think there was a paper in the country that didn't run.
Started in San Francisco with a young man.He may have been A college student who had a summer job with the Public Health Service cataloging cases of HIV and AIDS in some neighborhoods in San Francisco.Somewhere along the line, he heard some reference made to the Tuskegee study.I'm sorry, the study of untreated syphilis that happened to be in Tuskegee.And he wrote a letter to his supervisor at the Public Health Service in Atlanta asking about it.And the Public Health Service, the Maddock Public Health Service, replied, don't worry about it.Do your job and basically, don't bug me again.
A reporter for the Associated Press in San Francisco, whose name is Edie Leterer, was visiting her.She met the young student, whose name is Peter Buxton, and he gave her these letters.He said, I don't know what to do with them.And she knew what to do with them.She said, I'm not an investigative reporter, but I know one.
And I was in Miami beach at the time helping cover the Democratic National Convention.And Edie was in Miami visiting her parents, I think, in preparation for transfer to the AP's London bureau.And she brought the.Let the two letters over to AP's works, to the Associated Press workspace in the convention center.And she gave them to me.And I glanced at them and just put them in my briefcase.I didn't have time to do.To deal with them then.But I.On the plane on the way back to Washington, I read them and I gave.I handed them to my editor, who happened to be sitting next to me, and I said, what do you make of this?And he said, they're taking cognizance of it.They're not denying it.They're just basically telling this kid it's none of his business.He said, when we get back to Washington, I want you to drop everything else you're doing and go after this.
And that is basically the way it started.
Would like to add one thing to some of the comments I've already heard, and I'm not taking issue with any of it, but one thing I never hear discussed very often is that within the first decade of the Tuskegee Study, when American.A segment of American medicine was allowing men to die who didn't need to die to determine and were not told what they had or what was being done to them.
In that decade, the United States and its allies were in Europe trying Nazi war criminals for abusing tens of and murdering tens of thousands of people.I am not equating the two on a scale alone.They're quite different.But I am saying that this was one of the heights of hypocrisy, that we were punishing Germans for crimes that were similar.And crimes is my word, that were similar to what was being done in Macon County, Alabama.
And I just don't hear that said ever.So I wanted to put it out there for whether you agree with me or not.
The to go back to the question
Speaker P
of
Speaker N
where did it appear?I was getting, as you can imagine, inundated with phone calls from all over the country the day after the story ran.And one of those phone calls was from JET magazine.I don't believe Jet publishes anymore, except someone told me they did have an online presence.But the JET reporter called me at, at work and he started asking me questions about the study.And about 15 minutes into the questions, he paused.And then he said, you don't sound black.
And I said, I'm not.I'm white.And he said, then why do you care?
And I can, I can actually feel myself still tearing 50 years later, still tearing up over that question because it's, it just said so much about racial attitudes at the time, both ways.
And I think that's pretty much what that's what I can tell you, unless later you have any questions.
Dr. Curran and Dr. Snyder describe how the apology campaign developed, including the legacy committee, workshop process, and the steps that led to President Clinton's apology.
Speaker N
Thank you very much for having me and for listening to me.
Speaker O
Thank you, Ms. Heller.So I'm going to turn now to Dr. Jim Curran, many of you, no, Dr. Jim Curran, thinking about the historical perspective, but also thinking about today's perspective.What can you say from a contemporary standpoint?How can we assure that communities that this kind of study will never happen again?
Speaker Q
Joe I want to start off by apologizing about my voice.
I have an improving vocal cord paralysis.Think of me as being on a fourth step of a 12 step program in rehabilitation.
But I'll do the best I can.First of all, I'm honored to be here with so many people.Fred Gray, Susan, Jim, and particularly my friend and late colleague Bill Jenkins from STDs, who led the CDC response and fought government from within to make this happen.
So congratulations to all of you.I want to spend my time, however, thinking about the 90th anniversary rather than the 50th anniversary.How did this get started and how did it get continued for so long?And what are the lessons for today?And I speak as somebody who was part of the problem, along with my colleagues from 25 years before 1971 who were CDC employees who just watched the band play on with Tuskegee study.
First of all, this happened in 1932 in the Jim Crow, Alabama and the fairly bad researchers who did a lousy study in Alabama were the progressive liberals of the day.These people were shunned by their medical colleagues for caring about syphilis, who cared about syphilis even though it killed as many people those days as AIDS did at its high point in the United States per capita.So they thought they were doing something for people in the rural South.They were acolytes of the hero Surgeon General Thomas Barron, who has also been disparaged lately, who wrote the book Shadow on the Land, the title of which would never make it in these days.But these people were the progressive liberals, like me, who thought we were doing something good.
So watch out for us.And then the question is, why did we keep on watching it go on?What is there?So who did the problem?Who is the problem, and who's the problem for the future?
And also, why do we just let it happen?So my experience was in 1971, I was a medical officer in the what is now called the STD Division, assigned to Memphis, Tennessee.And my boss sent me a packet and said, our medical officers do yearly exams on Tuskegee participants.He will be coming over to your house from Arkansas, where he now lives, and you'll do a physical exam and ask him questions and then send it to us.And he sent me all the articles been published in JAMA for the last two decades.
So I read these, did my job, sent it back in, didn't think much of it until a year or two later when I got to be a little more involved in the STD division and found out what really happened during this exam.Why did I let this go?Why did the CDC let this go for 25 years?These were actually the progressives of their day.So watch out for them now.Thanks to you guys, we've improved research a lot.The Belmont Report, many other things have been lessons that have been institutionalized, but watched out for institutional discrimination.Now, I then went on to CDC in 1981, was temporarily, for 90 days, put in charge of the AIDS epidemic.It lasted 15 years while I was here.But those first 90 days, I was in the middle of huge homophobia in the United States and institutional homophobia, which lasted in the army and the military until President Obama became president.
Who are we kidding with?Don't ask, don't tell, don't ask, don't tell.What if they applied that to women?I mean, give me a break, right?But we just thought that's the way it is, that's the way the military is.
Then what else has happened.Well, when I was at cdc, we were allowed even by our leadership at CDC to provide HIV as a barrier to enter the United States along with other communicable diseases.Clearly no justification for that.A black mark in the United States for a long time, but accepted and acceptable.Then we still have the misuse of public health laws and misuse of public health to do things which we justify.
That includes killing Osama bin Laden, but it also includes the use of COVID screening at our southern borders.This is acceptable.Why do we accept this?Why do the liberals make it happen?What happens?Go on.So I think now the problem is less research than it is policy, but be aware of the policies that are killing people, particularly in inequitable ways.Failure of Medicaid expansion.Damn it, that's racism.Dobbs ruling.
What does that mean?Well, in Georgia, 70% of the women who get abortions are women of color.Who's going to disproportionately be at risk because of the Dobbs ruling, which we all accept.We say, well, you know, that's the way it is.Let's let the band play on.
So I guess what I'm saying is watch out for us progressive liberals and watch out for those of us who just accept the unacceptable.If we want to really make change, we can thank the people in the past, but don't spend as much time applauding them as dealing with the institutional problems we have going forward.
Speaker G
Thank you.
Speaker O
So next we will have a clip from the Clinton national apology for the study.
Speaker I
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.
To the survivors, to the wives and family members, the children and the grandchildren, I say what you.
No power on earth can give you
Speaker M
back the lives lost, the pain suffered,
Speaker I
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.
Speaker O
So, Dr. Snyder, that was a very moving clip from the Clinton apology.Can you remember and recall and tell for us how we got to that Clinton apology?We know it took some.Some doing.
Speaker R
Yes.Thank you.The short answer to that question is that it took a group of dedicated, persistent people, many of whom are here working overtime at times to make it.To make it happen.
I first came in contact with this endeavor in 1994 when we were Given a letter.I was given a letter to respond to.The letter was from Dr. Don Detmer, a vice president and a provost at the University of Virginia.And he said he had been to an ethics seminar, which I think some of you attended, and had been surprised to learn that the United States federal government had not apologized for the Tuskegee study.And he made some proposals for what could be done to alleviate that error.
He suggested specifically that Dr. Phil Lee, the Assistant Secretary for Health, who is the recipient of that letter, be included, perhaps Dr. Sullivan, Dr. Satcher.And at that time, it wasn't clear to me how to respond to the letter, so I took it to a senior staff meeting, which is attended by the director of CDC and the heads of the various components of cdc, and presented it.And I must have been very doubtful that we could get a presidential apology.But there was a woman there, Helene Gayle, who most of you know, who I think is now president of Spelman College, who listened to me and said that, why not?Why can't we get the presidential apology?
I'm sure there are other people that had that idea in the past, but that struck me and made me want to move forward with trying to get an apology.And the whole senior staff agree that that's what we should do as an agency.We should work toward getting a presidential apology.
Subsequently, we put together several proposals for a presidential apology.None of them were accepted and passed on to the White House immediately.
But we did learn some things from that.We learned that they wanted to know that we had done a thorough examination of the literature and there hadn't been an apology.They wanted to know what the President should say, they wanted to know when this should happen, etc.And as we moved forward, we realized we were getting suggestions for these proposals from inside CDC and not outside.So we had the bright idea, bright in quotes, that if we held a workshop at Tuskegee University, we could get better input.
And that was a good move because we had a number of you attending that workshop, contributing to the subject of the apology.And from that workshop, the Tuskegee Study Legacy Committee was formed with Dr. Vanessa Northington Gamble a chair, and Dr. John Fletcher a co chair.
Reuben Warren was there, Bill Jenkins, Dr. Riverby, and I'm sure, others I'm plucking on right now.But that, I think, to me, was the key ingredient in getting movement.Because subsequent to that, there were three recommendations from that legacy committee.Three main recommendations.One was the presidential apology.
The second was a bioethics center at Tuskegee.And if you want to know more about that, you can talk to Dr. Reuben Warren, who's the head of that.Who's here.And the third was ways to transform the legacy and move toward a positive inclusion of minorities in research and more educated researchers in terms of how to deal with minority populations.So within a short period of time, we had Dr. Who was head of the Tuskegee at the time, why am I blocking on Dr. Walter Payton?
Cindy, A proposal to us about setting up a bioethics center.We had him visiting.And I'm sure Dr. Satcher, throughout this process, was talking to people about the importance of having this apology.So that I think summarizes what we didn't know what it would take to get a presidential apology.There was no form to fill out, and so we made it up as we went along, but it worked out great, and it was one of the most moving experiences of my life.
Fred Gray recounts how he came to represent the men, the lawsuit and settlement, and the men's insistence on being heard and honored on their own terms.
Speaker O
So, Mr. Gray, we're going to sort of go back now in history a little bit and when you became the representative for the families in the settlement in the study.So we're going to ask if you could tell us how you came to represent the families legally and how you were successful with the case.
Speaker I
Good afternoon.
Thank you very much for the invitation.
I'm here really in two capacities.The first and foremost is I represent the 623 men who were involved in the study, both living and dead.
I also represent the personal representatives of each of the estates that I had to set up.And there were 463 of those estates that we had to do.
Let me Skip forward to 25 years later, and there's been some discussion here about the apology that I'll talk about a little later.The men knew nothing at all about apologies and knew nothing at all about bioethics.
But when we found out about that, then we joined in it.So let me first talk a little bit about how I got involved in the study in the first place.On July 27, 1972, 50 years ago, Charlie Pollard, who lived in Noticeauga, 10 miles from Tuskegee, came into my office with a copy of the Montgomery Advertiser.And he says, lawyer, I understand I was involved in this study that the government had.I didn't know it was a study.I thought it was a health care, and it was treating us for what we had.And he said to me, he said, lawyer, do you think you can help us?I said, I think we can.That was 50 years ago.I had to file a lawsuit on behalf of this study that at that time was over 40 years old within one year from the time that Gene Heller had disclosed it to him.
So I had to immediately get to work.And when Mr.Upon left my office, we had to do several things.One, we had to try to get him to find out all of his colleagues who were there and get them in so we would know.But as a result of our investigation, we found that the United States government exploited the participants in violating their rights guaranteed under the the 9th, the 13th, the 14th Amendment to the United States Constitution and Article 1, Section 6 of the Alabama Constitution in 1901.
The plaintiff further alleged that we were.That they were injured physically and mentally, that they were affected with distress, pain, discomfort, they suffered.It was racially inspired because no whites were involved and some of them died as a result of it.
Our investigation further showed that the United States government violated the constitutional rights of the participants in the following ways.The government knew that the participants had syphilis and they failed to treat them even when penicillin became available.The Public Health Service failed to fully disclose to the participants that they had syphilis, that they were participating in a study and that the treatment was available.And even when penicillin became available, the Public Health Service, and I think this is a part of that organization, led the participants in believing that they were being treated for whatever disease they had when in fact they were not being meaningfully treated at all.The Public Health Service failed to obtain the participants written consent to be a part of the study.
The study was racially motivated and discriminated against African Americans and that no whites were included in it and there were no rules and regulations that they had.We thought those were basically the areas that the health department and the federal government and what the President of the United States said in his apology, a portion of which you've just heard.When Mr. Pollard left my office, we had many problems that had to be solved.First, I had to participate, had to identify the participants.Second, I had to have a nationwide search to try to find some lawyers who would be willing to help me and help me pay the expense of getting the lawsuit ready.
But guess what?I couldn't find it out.So what did I do?I went to the local bank, told the bank he knew about the problem, to borrow some money.He said, well, lawyer, we'll lend you some money.
We can't do it on a continuing fee basis.Whether you win or lose, you're going to have to pay the bank.I ended up signing notes for thousands of dollars, didn't ask any of the heirs or any of the participants for it.Couldn't get any lawyers across the country to do it.I obligated myself.
And if it had not been for Jim Jones, who called me and told me when we filed the lawsuit, and they made me open 400 and some estates, and they said, we don't know where the records are.Well, Jim Jones knew where they were.He called me, and that was the beginning.It had not been for Jim Jones, we probably never would have had it.And if that lawsuit had not been filed within one year, I don't think any of us would be be here today.
So then what did we do?We were finally, once we got Jim Jones and I got up to Washington, and a day or so after he called, they then wanted to talk about settlement.And we were glad to talk about settlement because we still had some problems.We reached a settlement with them.What did we do?They wanted some money.I got as much money as I could get from the federal government.And they only give you what they want you to have and tell you how you have to do it.And not only that, they wanted to wanted it stopped.And we were able to get it stopped.
You heard a few moments ago about the health care benefits and the death benefits.We wanted that to be included in it so that it was a part of the court order and wasn't just left up to the government to do it.Those were the things that they wanted, and that's what we were able to get for them.Years later, some 25 years later, I got a phone call.Nobody had said anything to these men about an opinion apology, and they didn't know anything about it.
Everybody knew who had anything to do with health care, knew that Fred Gray represented the men.Nobody said anything to Fred Gray about an apology.I learned about an apology from the news media who called me and thought I knew about it.And I act like I did know about it.And I then called my clients and Ms. Elvis boys had just come out and they had shown this movie across the nation where these men were in juke joints at night with Ms. Rivers, and they called them boys and they said, lawyer, we're not a boy.
We were men in our community.And they said, well, what can we do?I said, well, I have heard that some people are out here, and I didn't know who they were.I've learned more about that here today than I've known, because once we got the case settled, we weren't concerned about it.But when we found out about that, I called the men in and my first wife had just died.We were working on a funeral.And we concluded and I had a nephew and a niece who was in D.C. who knew about the media.We said, we have a press conference and have these men before the nation and let them tell their story.We may be able to help the people who trying to get the apology.And guess what?
On April 8, we had a conference with those men.And they showed it.It was the national news.And guess what?The next morning I got a call from Bob Johnson, who wanted to be here, but he couldn't get here because his grandchildren came to see him over the holiday weekend and he has the virus.
But he called me last night and I told him I would talk for him.And I said, Look, Mr. Johnson, you in the White House, you know about all of this, but don't make the mistake everybody else have made.They always trying to do something for these men, but they never asked the men what they wanted.And you know what he said?Well, Mr. Gray, you're going to be our contact person.
And I was his contact person.He contacted me.I was responsible for getting arranging with him and with the White House about getting the apologies there.And I just want to share with you and I realize I'm taking a little more than a few minutes, but you need to hear this.You've never heard the men's story and I may never get a chance to tell it again.
So I better tell you what we did.We ended up having that meeting.And let me share with you the second part of it, because that's where I represent these men.And these men tell for the first time what they wanted, not what somebody else wanted for it.So then I represent then these men when at the apology.
And that apology was made on May 16, 1997.And at that time we arranged for Mr. Shaw.Herman Shaw was the most literate of those men who were there.And I arranged it where he would introduce the President.And you heard the President, but you couldn't have heard the president until after Mr. Shaw said something.
Do you want to know what Mr. Shaw said?Let me tell you.
This is Mr. Shaw at the White House at the East Ring on 16th May, 1957.He says, on behalf of all the survivors who are here today and those who could not attend, and on behalf of the heirs of my fellow participants who have died, I wish to thank President Clinton for inviting us to the White House.It has been over 65 years since we entered the program.We are delighted today to close this very tragic and painful chapter in our lives.But he said more Mr. President, we want to thank our lawyer, Fred Gray, who represented us during these 25 years and who has helped to make this day possible.
I appreciate Mr. Shull saying that on behalf of his contention, But Mr. Shaw said more as I said and this is what I tell you, as I said at the press conference at Shiloh Missionary Baptist Church in notta saga on April 8, 1997, in addition to an apology, this is what these men went and I'm going to ask you all to help them keep it.We want to construct in Tuskegee a permanent memorial, a place where our children and grandchildren will be able to see the contributions that we and others made to this country.I am glad that I have helped form the Tuskegee Human and Civil Rights Multicultural center, which will be for the purpose of creating such a lasting memory.Now that's what he said.Then he said.
I have copied and in my book, the Tuskegee Syphilis Study.You'll have all of his all of these things.But I have copies of his speech.So you will have it here for those of you who want to see it.Then the President came in.
Let's listen to you heard a part of the President, President Clinton stated in part in his acknowledging of all those persons at the White House.And he even thought about Fred Gray and he says and the role of I played.This is what the President said.If you looked at the rest of a great friend of freedom, Fred Gray, thank you for fighting this long battle all these years.
This information and more concerning the men can be found in the book.Now I'm about through now.There has been.It has been a long 50 year struggle and there isn't almost, there isn't almost a day that I don't get a call for somebody on Tuskegee Sicily study and I receive all of my calls.It's been a long 50 year struggle for me as their attorneys.From 1972 to date.From then until now is about 90 years since they entered study.I have cooperated with Tuskegee University on everything it had from the beginning of Mrs. Gamble's stance up until Dr. Warren.I have cooperated with the heirs of the heirs of Mrs. Lewis, who is here today, everybody who has wanted to do anything about these men.I have helped.
My most difficult battle and representing the men is to get individuals and corporations like some of you to contact the participants or their legal representatives to ask them what they wanted.Many individuals and corporations have obtained grants and other benefits as A result of the disclosure of the Tuskegee syphilis study.Today, as we celebrate the 50th anniversary of the end of the study, don't forget what the men want, a permanent memorial in Tuskegee so people can see the contributions they've made.Let me show you a copy of it.Not only did that bank lend me the money, and thankfully, I was able to get a good settlement, and I was able to pay them back, and I didn't have to pay it, but that same bank later on bought the other company.And I know you're going to stop me.I know you're going to stop me, but right, right here.
Here is the bank.This is the building.It's there.
It's for you.She telling me to stop.I must stop.I must tell you that I've got everything I wanted.All I want you all to do is to keep the doors open and keep the center open.
Thank you very much.
Dr. Gamble argues that Tuskegee should be understood through trustworthiness rather than simple distrust, and that the study is only one part of a broader history of Black medical harm.
Speaker O
Well, Dr. Northington Gamble might be a little bit of a long act or hard act to follow.Okay, so when we talk about Tuskegee, it has almost become synonymous with the concept of distrust or mistrust.And we know that you were going to talk to us a little bit about what trustworthiness is and moving towards trustworthiness.So can you make a comment about that, please?
Speaker S
I want to pick up on something that Dixie Snyder mentioned, and that was.You know, we talked.There's been a lot of talk about getting to.To the apology.As a historian, one of the things I teach my students, there's different interpretations of events, and that the important part for this is that there was a presidential apology.When I saw David Satcher today, I had my mask on.He says, I heard.I know the voice.And I was probably thinking, when he was CDC director, he got many calls from me complaining about something or another.And.
But one of the things is that I think that we have to make sure that we don't think about this as theoretical as an apology.As theoretical.It was experiential.And Dixie said it was one of the most moving events of his life.And so that when President Clinton said, and I am sorry, I was sitting next to my friend Ruben Warren, and we were in tears.
There were sobs around the room.And it wasn't sobs just about the syphilis study, but it was sobs about how black people have been treated in this country.And so before Joe, before I go on to talk about that, I just wanted to let people know what it felt like that day.
In your question About Tuskegee being used as for distrust or mistrust.First of all, using the term Tuskegee to represent mistrust.The syphilis study.People forget the good things that have happened at Tuskegee Institute.
When Vladimir doctors couldn't get training, when black patients in Macon county couldn't get treatment, they went to Tuskegee Institute.So I think that part of this is that, you know, when Mrs. Head talked about, you know, the harm it did to Tuskegee Institute, that's part of the erasure.Erasure of the history of what happened at Tuskegee.And then, you know, some people think that it was the airmen involved in this study.And then there was the film with.
With.On the syphilis study with Laurence Fishburne.He was in the movie, also in the movie about the airmen.So people get the two confused.And so, you know, you think that, oh, it was the airman who was involved.No, it was Laurence Fishburne.Someone once told me.Anyway, but I think, too, that what's important is for us, one of the things that we.Those of us who push for the apology was, as a beginning, beginning to talk about issues around trust.And one of the things I have been doing a lot lately is talking about trust and trustworthiness, especially with regard to COVID 19.
And I take a stance that many people don't take.First of all, and not to use the term distrust, because it became.And, you know, it was because.Became shorthand for, like, this inherent trait of black people, that black people are somehow biologically distrustful.And so that it was the scholar over 20 years ago, Levira Crawley, who started questioning the use of the word distrust and asking us to think about trustworthiness.
What have you done to gain my trust?Don't assume you have my trust.Just because you're my doctor does not necessarily mean I trust you.And so to get into that conversation, and one of the things I've talked a lot about recently is how Tuskegee is the reason why black people have.Have attitudes they do towards public health in the medical profession.
And I think that that is simplistic.And not only do I think it's simplistic, I think it's wrong.And the reason why I think it's wrong.As a historian, I have looked at some of the attitudes of African Americans towards medicine and public health before the syphilis study and before the syphilis study was revealed.And you see that they were at, you know, that be careful when you go to the doctor.
And there was John Kenney, who was Booker T. Washington's physician before the Klan ran him out of Tuskegee, said that he wrote something on contributions of African of the Negro since it was 1941 in surgery.And he talked about all these different surgeons who had done things.But then he said there needed to.This is 1941.There needed to be a monument to the multitude of African Americans who gave to surgery via the guinea pig route.
So that it was.It's not just the syphilis study.So I think people, public health, should need to be very careful saying it's the syphilis study.There are many times I will give a talk on trustworthiness.And the first question that to me was like, well, what should I.What should we do to get our communities to trust us?I'm like, I don't know.I just got off the plane.And so there's a need to have this conversation.And the other thing I think, as I close here is that we think that.
I think the importance of not to think about one particular event having such a deep impact on the African American communities and that the word Tuskegee has been used more in terms of the.The attitudes, the actions, the, you know, the negative attitude actions towards African Americans.So it might be what happened at the corner that day.It might be in a certain community where the police were, the university police were there with the city police, where tear gas was shot.And so I think we have to be very, very, very careful to see what this.
The lack of trust, a lack of trustworthiness is about and not be so facile to say it's because of the syphilis.
The panel turns to bioethics, public health ethics, and the role of institutions in repairing harm, including the Millbank Fund's involvement and its later reckoning.
Speaker O
Thank you all very much.And even to you, Mr. Gray.Thank you very much.
Speaker A
Thank you so much.Act two, please arise.
Speaker G
Oh, gosh.
Speaker A
Those are some very powerful behind the scenes moments.And thank you so much for paving the way.Act two on what we're gonna be doing in act three, please allow me to introduce act three.
Act three, please stand.You've got Dr. Reuben Warren, professor and director of the national center for Bioethics and Research in Health Care at Tuskegee University.Mr. Chris Kohler, President of the Milbank Memorial Fund.Dr. David Satcher, Founding director and senior advisor at the Satcher Health Leadership Institute and former CDC director, Assistant Secretary for health and Surgeon General.Could you do any more?
Mr. Daniel Dawes, Executive director of the Satcher Health Leadership Institute in Morehouse School of Medicine, and Dr. Mary Linehouse, current team lead for the Public Health Ethics and Strategy Unit of the CDC Office of Scientific Integrity, Our moderator.
There she is.It's Dr. Susan Laid.I was looking for you.Coming this way.
Speaker T
Thank you so much, Dr. Smith.All right, I'm excited about this panel.
We're going to start with Dr. Warren.We know that one of your personal and professional goals is to promote the understanding of bioethics, what it is, how it relates to everyday life.That includes taking the lessons learned from our difficult past, asking the hard questions, and looking at current issues related to racial disparities in disease and treatment.How did the syphilis study at Tuskegee in Macon county lead to this work?
Speaker U
First and most importantly, the US Public Health Service Cifida study at Tuskegee has to be contextualized in a broader framework.And you heard my dear friend, Dr. Vanessa Northington Gamble attempt to contextualize it.And so my comment starts with people of African descent in 1619 as a starting point.That's contextualized so you don't get caught up in this incident and think that is the whole story.It also goes on to talk about the Trail of Tears, 1830, 1850.
Contextualize what's going on in this country.And don't stop there.
The U.S. Mexican War, 55% of Mexican land was discovered by the United States.
1942, 1848, I'm sorry.And then 1942, 1945, internment camps, California, Arizona, Wyoming, Colorado, Utah and Arkansas.Asian American, Japanese in specific.So the context is what is really going on?
Ethics, bioethics, public health, ethics.The framework of spheres of ethics is what we should talk about.Are we talking about your ethics or my ethics or our ethics?It's easy to determine that your ethics are the right ones.I think you heard earlier that Dr. Cutler said the men didn't have nothing, so we didn't do nothing.
So if I had to do it again, I would do it again.
His ethics when the study, so called study began, there was no appropriate treatment for syphilis.But what happened when penicillin was discovered?Was it okay then or was it still a study?Bioethics, the focus on the doctor patient relationship and how changes in the healthcare system affected the one on one or the collective.The public health, the population base.
The Affordable Care act is a prime example.
And then when we talk about the social context, we talk about public health ethics, which is a framework that I know all of you either know or should know about.
As you well know in this forum, public health strives to improve the quality, functioning and longevity of populations.Because public health is viewed by some Very broadly, public health ethics assumes an equally broad conceptual base.Public health ethics places the emphasis on the ethical problematic, the relationship of interests and health of groups, the social justice and distribution of social resources, and the positive and social rights of individuals.That's public health ethics.And I won't go into what social justice is because from my perspective, public health and social justice are synonymous.
So when you do in public health appropriately, appropriately, you're also doing public health.And if you're not doing public health ethics, you're probably not doing public health appropriately.
Bioethics, Autonomy, benevolence and justice.
Public health ethics.Community engagement, in addition to autonomy.Beneficence, in addition to benevolence.Not just the intention to do good, but the doing of good, measurably and most importantly, most importantly, social justice.What is good for you is good for me.
Morality, ethics, are they the same?No, they're not.
Health equity, the new buzzword.But how do you do health equity without doing health disparities first?
So let's not change our language and think our behavior has changed.Let me leave you with a framework that I've heard many, many times.
If they come for you.
No, no, no.If they come from me and you do nothing, who will be around when they come for you?Thank you.
Speaker T
Mr. Kohler, I understand the Millbank Memorial Fund started in 1905.Can you tell us more about the fund and its connection to this study?
Speaker V
Yeah.Thank you, Ruben.So 1935, we're a public health foundation.We are approached by the US Surgeon General to say, we have this study that's going on in Alabama.We're having a hard time keeping men in the study.
We have this idea that burial fees might help them stay in.And would you be able to contribute to that?The fund in New York City saw a chance to help poor black people.In Alabama, they saw a chance to advance public health research and maybe slip a solid to the feds along the way.So they said, sure.
What they didn't necessarily acknowledge, but they knew, was that those funds would be made available to the families only if they consented to autopsies for the men who had died in the course of the study.This continued for the remainder of the study until 1972, when the study had ended.The fund would get in.The Millbank Memorial Fund would get invoices that someone had died.We would pay, and that was the extent of what we knew.It was like getting a periodic bill.We would get updates from the US Public Health Service.They would ask, are you still in, we would say, yes, we would.After 1972, when the study concluded, we were part of Mr. Gray's lawsuit.Thanks to Mr. Jones, we got ourselves removed.
Then we set about forgetting our role in the study.Those of us who would be learned of it could turn away from our involvement in the study, which is a definition of injustice and privilege that changed in 2020 during the period that US was going through at the time and continues to go through around.You can call it a racial reckoning or an awareness of the toll of systemic racism.And for ourselves, it made us start to confront more directly our legacy.We, with the help of Susan Riverby, conducted a history to find out exactly what our involvement was at what time, so that we could document that.We made it public.We did a governance review that resulted in a change of our admission and turn over a significant portion of our board.We are finishing an audit of all our other activities to find out if there's anything else of import that we should be concerned about.
Probably most importantly, we embarked on our own process of apology.We reached out to Ms. Head and the folks at Voices for Our Father's Legacy Foundation.We apologized to them in private.We apologized in public.Then we were fortunate enough to do our own version of an apology ceremony at Tuskegee University in June.And I would speak to the power of that event in 1997 and what it was like just this past June.It's a privilege to be a part of that.
I want to just.You can wrap up and move along here.What I want to reflect on what Ruben was saying with health equity and this notion of trustworthiness.I think the work of health equity, or call it what you will, social justice, public health ethics, is the work of building trustworthiness.Where I would leave you with, Ms. Head and I were fortunate enough to write an article that was just in Health affairs, the blog yesterday, so you can look it up.
There really are three parts to this.There's acknowledgement, there's accountability, and there's repair.We have to go through all of those.We have to acknowledge the harms, the acts of injustice.We have to hear those stories.We have to document in data with the disparities, what's going on.We have to take accountability, whether we are perpetrators of that harm or participants in that harm in those systems.And then we have to go through the act of repair, which by definition is mutual.And so it is the work together to address these past harms after we've taken accountability for them.So it's really been Our privilege.We were.We relate to this.We continue to deeply regret and apologize, but it's been our chance to participate, to learn from this, and it's our privilege to work to try to address these and to build a more just system that can serve everybody.
Thanks.
A special message from Surgeon General Murthy introduces Dr. Satcher's reflections on dignity, the apology, and how Tuskegee fits into his life and career.
Speaker T
Before we talk to Dr. Satcher, we have a special message from Surgeon General Dr. Vivek Murthy.
Speaker W
Good afternoon.I'm Dr. Vivek Murthy, Surgeon General of the United States.I'm honored to be able to speak with all of you at this special event, and I'm humbled to have the opportunity to join you in remembering and reflecting on the 50th anniversary of the end of the Tuskegee Study.It is only when we choose not to look away, not to forget our history, and instead choose to remember and reflect on our history.
Only then can we undertake the difficult, necessary work of building a healthier present and a more resilient future.That's something that one of my mentors and predecessors, Dr. David Satcher, taught me.Dr. Satcher's advocacy when he was CDC director was instrumental in bringing President Clinton to issue a long overdue formal apology 25 years ago on behalf of the American people and the U.S. public Health Service to the hundreds of men used in research without their knowledge or consent, as well as to their families.But one of the most remarkable aspects of Dr. Satcher's extraordinary story is that despite his intimate knowledge of that history, of that betrayal by the US Public Health Service, of our medical ethics and our civic ideals, Dr. Satcher nevertheless accepted.The following year when President Clinton offered him the position of Surgeon General to oversee the Public Health Service Commission Corps.
Dr. Satcher was a black man, born in Alabama, educated at an hbcu, and an organizer in the Civil Rights Movement.He was overseeing the very service that had so irreparably harmed his community.And he was now tasked with continuing the work of rebuilding it as an institution of trust, integrity, and expertise.Instead of turning away or towards bitterness and resentment, Dr. Satcher chose progress.He chose to help the Public Health Service look at its history and at those it had harmed.
He chose to get the Public Health Service to reckon with what it had done, to learn from its mistakes, and to grow so that nothing like the Tuskegee Study could ever be orchestrated in our country ever again.He chose to focus on ensuring that the Public Health Service could once again be trusted to fulfill its mission of keeping the country healthy and safe.It's an example that we should all strive for.Of course, there's still progress to be made, as we've seen clearly throughout the COVID 19 pandemic and vaccination efforts.But I'm mindful of Dr. Satcher's legacy every day as I sit in this seat that he once held and lead the Public Health Service myself.
I'm also mindful of the responsibility the Public Health Service and I still have to work, learn and grow to ensure a healthy, equitable present where everyone has access to the benefits of medicine and protection in medical research, especially those who have been disproportionately impacted in the past.I'm mindful of our responsibility to lay the foundation for more resilient, more just and more secure future for all.We will continue that work, just as I hope all of you will continue to help us remember our history and remind us of its importance.So thank you all for being here today and thank you for allowing me the honor of speaking with you.
Speaker T
So, Dr. Satcher, I know you weren't expecting that, and I'm going to go back to our original question for you.Do you remember when you first learned the true impact of the study?What was your response to efforts to make sure this would never happen again?
Speaker H
Let me say, while I greatly appreciate the statement from our current surgeon general, whom I admire greatly, I didn't put him up to that.
We are friends.In fact, I think our friendship developed here in Atlanta when he was Surgeon general first time I made some travel here.But I'm going to be brief.
Will you ask your question again?
Well, I was believe it, President Meharry, when I first heard about the study.In fact, it was it was Fred Grace and Jim Jones was work that Trish told me Jim Jones had written an article about the Tuskegee study, and I read it while I was a fellow with Al Haines at Drew.So that was the beginning of my learning about the Tuskegee study.And then later on I heard about Jim Jones, whom I admired tremendously even today after he took up all of the time and stuff.He's such a person of great quality and integrity.
We're just fortunate to have him on our side.
Since I don't have a lot of time and Jim Jones is studying something I read while I was working with Al Haines, and you probably remember Al Haynes down a few years ago.But anyway, I want to talk about three things briefly.One, dignity, two, caring and three, leadership.When it comes to dignity, one of the things that came out on that day in the East Room of the White House when President Clinton issued the apology.And I think I really got to know President Clinton, and he got to know me in deliberations around the apology.
I came out of that experience really admiring him.And even this voice of caring that he has and that he used to communicate the seriousness of this situation.There was no question about it.
So President Clinton and my relationship started to develop.We disagreed later on some things.We didn't disagree on this one, but there were areas where we disagreed.But it was kind of knowing what we both stood for.And once you know what the other person stands for, it makes it much easier to deal with agreements and disagreements.And that was the case here.
The issue of dignity is a very important issue.And regardless of what else happens, nobody will ever be able to take dignity away from the men who had it, despite their experience.These men, as you heard from Dr. Gamble and others, were men of great dignity.I will never forget.I didn't.
And maybe this is a shortcoming on my part.I did not expect to meet men.And there were only six, by the way, only six of them who came to the White House.Two of them were ill and could not come.And if you look at pictures of the dinner the night before, you will say, well, there are only five.
Well, the problem with that, of course, is that the photographer missed the fact that one had gone to the restroom while we were taking the picture.So we did our best.But it was great to meet them.It was great especially to meet Mr. Shaw.I will never forget the interaction that I had with him.
And I mean, like attorney Jones, he was just a great man, even though he didn't have the kind of education.But he brought a lot of dignity to the table, and I will always appreciate that.I sent him my, I think, introductory paper that it reminded me of was Whitney Houston, you can't take away my dignity.That was what I think of when I think of those men.Despite all that they had been through, nobody could take away their dignity.
Now, I want to close by relating briefly my own experience in Alabama and growing up in Alabama, with what happened there.And I can't say.I'm not saying cause and effect, but I'm saying that there were many people, black people, especially in Alabama, who suffered discrimination.Whenever my parents talked about my going into medicine, they always start with the story of when he was a baby.The doctor said he was not going to live, and yet he could not admit him to the hospital.
That was the way they introduced me and my career in medicine.
I was four years old, I believe, when I had this Great idea that I was going to buy an ice cream cone, so I saved my pennies.We live way out on the farm, and so apologize.
Speaker V
So.
Speaker H
Thank you.But anyway, we lived way out on the farm, and there were nine children.My mother came from a family of 17, my father from a family of 11.And they worked in the fields and they went to church.It was sort of their lives.
My dad also worked at the foundry.And I'm only saying this to say it was in that environment that a lot of this happened.Environment where people had trouble getting jobs, trouble getting access to health care, even when you thought a child was going to die, that was part of it.And so I'm not going to argue about the motivation of people.I'm just going to say it was that kind of environment.
I'll just close with one story at the end of the year when time to get together and talk about what the man owed us.
My grandfather would go with his figures.He was pretty smart for somebody who never had any education.My father had one year of education, and my mother dropped out in the fifth grade.But they were smart.And so my granddaddy came to settle up with the man, and he argued with the figures of the man.
And the man, the owner of this land, got very upset, and he pulled together a group of people and they put together a lynching mob.They said they were going to lynch him because he was talking back to the mayor.So it was that night that my grandfather, with his family, large family, left Alabama, hitchhike to Birmingham and then to Cleveland, Ohio, without knowing that many years later, I would graduate from Case Western Reserve in Cleveland.
There's something about this history that sort of comes together.You know, it's amazing.
So I don't see the Tuskegee study, the study that took place in Tuskegee, as isolated from the plight of black people.And we can't forget that there is a consistency that we have to deal with as we try to raise our children and to overcome all of the things that we have had to deal with and still deal with.Thank you.
Dr. Dawes explains how voting, policy, and government structures shaped health inequities and helped create the conditions surrounding Tuskegee.
Speaker T
Thank you, Dr. Dawes.The satcher Health Institute is affiliated with Morehouse School of Medicine, and we know the institute is committed to innovative research and programming for mental and behavioral health and health system transformation.You've written a book about political determinants of health.Can you help us understand what you mean by that?
Speaker X
So it's a transdisciplinary framework that encapsulate what it has taken in this country to concretize health inequities, structurally and institutionally, and what it's taken to overcome those structural and institutional inequities.And it looks at it from three buckets, voting, government and policy.It breaks it down.Looking at the systematic process over our country's history in terms of structuring relationships, structuring social, economic, political relationships, distribution of resources and the administration of power and how they've mutually operated over time to either advance or hinder health equity.And Dr. Warren started at 1619, which I think is a fair starting point.I start at 1640, because that's the time when the abolitionists, as they were gaining headway or steam in their movement, actually found the commercial interests and the political determinants combining forces to create our first law, the body of liberties law that legalized slavery.And then, as if that weren't enough, they amended it over time so to include the offspring of these enslaved folks.
What I find very interesting from a poetry, political determinants of health standpoint is that every single time abolitionists or health equity champions and leaders have struggled to pass more inclusive health policies, more equitable policies, they have always found themselves confronting this regressive devolution or this retrenchment period and backlash.So one of the themes that I found very interesting, as we've looked at, you know, why is it that these men were approached right?Why did they come to Alabama to conduct a study, as I've heard Dr. Satcher mention, his upbringing and his struggle to access healthcare services, to address the social determinants of health needs in his community there in Alabama.
It's very interesting.And I've heard this common theme, I think, from the other two panels, that this wasn't an accident.This an organic.It's not an organic outcome.It was intentional and it was politically driven.
And so when you look at Alabama, it's also fascinating to me that this week Alabama actually ratified its seventh constitution.Isn't that interesting?Just this week, seventh constitution, to address the racist language in the Constitution.And so that law in 1901 which precedes this study, actually ensured that these individuals, these men and their families, were not allowed to go out and vote.Before that constitution passed, 200,000 African Americans, almost 200,000, were allowed to vote.
We know from political science research that voting can mean the difference between life and death, between health and sickness for these communities.So it's been fascinating to look at the research since that's standpoint.Since that time, Nancy Krieger and others have looked at 1964 with the civil rights movement.Interestingly enough, when African Americans and other minoritized groups are able, they have, they're enfranchised and allowed to vote.Usually we see more egalitarian policies that have led to better health outcomes over the decades.
Well, this one in 1901, of course, with the Constitution did not allow for such.And we know then that in addition to that, and I find this also interesting that today I'm seated next to the 16th Surgeon General of the United States who spent the last 60 plus years of his career fighting to repair the past, to address the political determinants of health inequities.And yet 10 surgeons general before him, Thomas Perrin, you had a Surgeon General who actually was instrumental, an architect, they say, in developing this study and who was also an architect in developing the Social Security Act.And they intentionally neglected agricultural and domestic workers who In Alabama, 80 plus percent of the African American community fit into one of those two buckets.So is it surprising then, right, how the lingering effects of this study of our laws continue to have an impact?
So I will stop there because I know we are short on time, but that's just a little taste of pdoh.
Dr. Linehouse outlines CDC's current ethical safeguards, health equity initiatives, and the agency's ongoing responsibility to build public trust.
Speaker T
Thank you.And Dr. Linehouse, CDC has made great strides to ensure something like this can never happen again.Are we there yet?Where are we now?And what do we still need to do?
Speaker L
Thank you, Susan.It's important to bring humility in reflecting on how far we've come and where we need to go.Our charge goes beyond preventing unethical science.We are also committed to attending to health disparities suffered by groups of people who have unfairly accepted experience.These obstacles to health based on their racial or ethnic group, social, physical or other status.
So where are we now?Cdc, other federal agencies and federal institutions follow a set of federal regulations known as the Common Rule established to protect human study participants.The Common Rule requires scientists to obtain and document informed communication consent from study participants and directs organizations like CDC to create and use review boards to evaluate and approve research studies both before they begin and while they are in progress.The Common Rule also provides additional protections for pregnant women, fetuses, children and prisoners.Other federal laws hold CDC and other entities responsible for protecting individuals privacy and the confidentiality of their data that we collect during public health activities.
CDC's Office of Scientific Integrity oversees and supports CDC scientists in abiding by the Common Rule and federal law to protect the rights, welfare, privacy and confidentiality of people who participate in CDC's studies.CDC has gone beyond legal requirements to foster ethical science.We have created a Public Health Ethics and Strategy Unit, which has publicly fostered ethics competency worldwide by creating and sharing widely open access downloadable ethics books and training materials.Inside cdc, our unit coordinates an agency wide ethics committee and provides consultation services and ethics training to all of our staff.Now, with these safeguards in place, we still have work to do beyond ensuring ethical science.
CDC is in the process of implementing new initiatives to integrate health equity, addressing health disparities into the fabric of all that we do and to better serve a more diverse population in the United States.Health equity means that everyone has the opportunity to be as healthy as possible.The unfair obstacles that are faced overwhelmingly impact communities that are underserved, including communities of color as well as people with disabilities and other groups that have been marginalized in our society.These inequities don't just affect these groups that are hardest hit, they affect all of us.Health disparities weaken our society, diminishing the human potential of millions of people around the country.
CDC is improving its public health activities to shift from simply listing indicators of health disparities to identifying and addressing sources of those disparities.CDC is also focusing internally to increase the diversity, equity, inclusion and accessibility within our workforce to better reflect the diversity of the people that we serve.And we can do more in response to the call of nothing about us without us.CDC needs to better engage with communities we serve throughout the entire process of our public health activities, from deciding together what questions to ask and finding out how best to broadly share findings so the community members can use those results themselves.This work is not easy in the face of the historical and institutional injustices that we have heard about today and are well aware of.
Ensuring the CDC studies meet the highest ethical standards and that our programs carefully address health disparities are not destinations, they're processes.They require humility and a constant focus on ethics and equity.Our trustworthiness in the eyes of the public is the true measure of our efforts and of our progress.
CDC recognizes Bill Jenkins for his courage and recounts his role in exposing the study, supporting the men, and helping secure the apology.
Speaker T
Thank you so much.
Speaker A
All right, thank you.Act three discussants.
Speaker L
Awesome.
Speaker A
You were able to highlight how public health professionals and the public at large can build on equity and ethics principles.It's all about building bridges to trustworthiness.I would now like to introduce Act 4 acknowledgement.This is CDC's opportunity to thank former CDC staff who worked internally to shed light on and to end the study.
Your host for this act is Dr. Leandris Labird, Director of CDC's Office of Minority Health and Health Equity.
Take your time, Dr. Laverde.
Speaker E
Thank you, Dr. Smith and good Afternoon, everyone.During this occasion of remembering 50 years since the termination of the syphilis study at Tuskegee, as director of CDC's Office of Minority Health and Health Equity, and on behalf of our Chief of Operating Officer, Mr. Robin Bailey, and all employees across the agency, I want to acknowledge, recognize and thank Dr. Bill Jenkins for his service.
I want to thank him for his service to the agency and most importantly, his contributions to promoting, improving and protecting the public's health.It would be disingenuous to suggest that I possess a true understanding of the challenges he faced in speaking out against a study that at the time was supported at the highest levels of multiple federal agencies.Yet he spoke up.I can only imagine the price, professionally and personally, that he paid to oppose the general consensus upon persons of the highest pedigree and degree.Yet he paid it.
We have heard there were many others who felt and thought as he did, but at that time in our nation's history, it would have been prohibitive to do so.Yet Dr. Jenkins proved consistent with the words of Dr. Martin Luther King, Jr.It's never the wrong time to do the right thing.
We all agree that Dr. Jenkins was a man of marked greatness.Yet history teaches that great men and women aren't always great.They're just great when they have to be.At a time when Dr. Jenkins had to be great, he rose to the occasion.And on behalf of the Centers for Disease Control and Prevention, I and we thank him.
And in his stead today, as well as public health, shero of her own distinction, I'd like to welcome Dr. Diane Riley to the podium.
Speaker I
Dr. Riley,
Speaker P
Thank you.
Speaker I
I have some remarks.
Speaker S
So that was to me,
Speaker P
my family is deeply grateful for the acknowledgment.
It was a long time, lifelong commitment to this study.
He even produced a 20 minute documentary entitled Voices of Tuskegee that's available on YouTube.Of course, knowing Bill, he never really got it approved by cdc, but that was beside the point.
The documentary provides a rare opportunity for you to hear from some of the other men and some of the family members, and so I encourage you to look for it.Bill began working as a trainee at the national center for Health statistics in Washington, D.C. in the fall of 1967, after graduating from Morehouse College.During his first few years, he applied his radicalism to organizing the other young black federal employees and what was then the Department of Health, Education and Welfare.They met informally and wrote an underground newsletter known as the Drum.Within two years of working there, a white colleague went into his office with Publications about the syphilis study and asked Bill to read them.
Now I'm going to read you some of his own words that he spoke during an interview for a miniseries entitled Choice the Backstory, Episode four, Tuskegee, was the tip of the iceberg.So here are Bill's words.I had been in my second year in the commission corps.Coming into my office, there was a physician who wanted to talk to me about a study down in Alabama.This was hugely significant because I was somewhat black, radical 60s type person.
And this person was somebody who tended to avoid me at any cost.I had heard his comments.I wasn't sure what it all meant.I only knew that he was deeply concerned or who would never come into my office to talk about it.I went to my advisor.
She told me that people misunderstood the study and that it was an important study and said, don't worry about it.Over the next few weeks, I decided to try to read something about the study myself that was published.That's when I found out that my advisor was actually a statistician on the study.I decided to talk to some of my friends, read more articles, and try to make a decision.It took us weeks to realize, oh my God, there's something wrong.
It always amazes to me that when you say they knew it was unethical, that wasn't the way it was.In the beginning, we had to struggle with understanding.Once we understood, we decided that we would write an article about it in our newsletter.Then we decided to put all of the articles that we'd read and send them to newspapers like the Washington Post and wait for this big article to come out.We didn't understand how news articles were written.
We should have written a news release for the journalists, and then the journalist rewrites it and puts their name on it.We weren't sophisticated enough to understand that.We didn't get very far with that approach.
So that was Bill's initial description of his attempt to be a whistleblower in 1995, almost 25 years after he learned of the, he became the manager for the Tuskegee Participants Health Benefits Program office here at cdc.So here's a quote from that work.My job was to help the men live as best life as they could with the support that we could provide them.When I took over the program, I wanted it to be far more proactive with their health.We wanted to take a broader look at what we had a problem one year when it was very hot, that apparently you couldn't prove it, but there was at least one death from heath stroke.
We wanted to solve those kinds of environmental problems.And every April, we went out and visited with the men to find out how they were doing, whether their healthcare workers were taking care of them, and so on.
Bill also worked diligently behind the scenes to bring about the presidential apology.He was always in the background convening committee meetings and working on the details of how to get it done.And this last quote is what he has to say about that.That made a difference in the lives of men, because people then understood that the men weren't victims, they were heroes.They knew that much that by participating they were trying to do some good for their community.
People did not see that.People wanted to write articles about how they were ignorant and victims.When we were coming back with the men from visiting the White House, the pilot on the plane told the people on the plane that these men were with them.The people stood up and clapped.
That was the thing that became so important to me, the most important thing for me and my work.
Bill has always said to everybody he meets that he wanted them to know that these were men of grace and dignity and they were his greatest heroes.Thank you.
Ted Pistorius tells Peter Buxton's story, showing how his Holocaust background shaped his moral response and why his persistence mattered.
Speaker E
Thank you, Dr. Rowley.And I would now hand the podium over to Ted Pastorius.
Speaker Y
Thank you.
I'm here to speak today about Peter Buxton.So Peter Buxton is a whistleblower who's credited with bringing about the termination of the syphilis study.But why was it him?And why the study, which actually was never a secret?So Peter was a self described child of the Holocaust.
He was born in Czechoslovakia, his father is Jewish, his mother was Christian, and they fled the Holocaust in the coming age.And he began his migration to America at the age of 11 months in 1938.He grew up speaking German, and he studied German history, Nazi medicine, and the Nuremberg trials.And it was with this background that Peter joined CDC as a VD investigator in 1965 in San Francisco.Now, I had the benefit of working with Bill Jenkins, and he had told me about Peter, the Tuskegee study, and I wanted to learn more.
So Bill gave me his phone number.So I called.I did.I called Peter.Peter's never met a stranger.And within minutes he was telling me about his history.So he told me that he was in the lunchroom and he overheard a physician talking about the study to two nurses.And he was intrigued by what he was hearing.And when the nurses left, he asked the physician about the study, and the physician eagerly told him about what was going on and shared materials with him.He was proud of what they had done.
So Peter told me that then he took those studies, and when he wrote his next quarterly narrative, he compared the study to the medical crimes of Nazi Germany and stated that the men should be treated.Peter said that when he submitted it to his boss, his boss said, when they fire you, please forget my name.I have a family.He told me how he then sent a letter to Dr. William Brown, who was the STD director at the time, and he questioned the volunteer status of the participants and again urged that these men be brought to treatment.He then told me about how he was subsequently summoned here to Atlanta and told me that he was lambasted for his temerity.
Now, in 1967, Peter left CDC.He left of his own free will and volition and he went to law school.But In November of 68, he again wrote to Dr. Brown and he again urged him to end the study and treat the participants.Now, this time, Dr. Brown shared the letter with Dr. Sencer, the director of the agency at the time, and together they convened a blue ribbon panel.When the panel's work was completed, Dr. Brown wrote to Peter, and this is a quote.
After an examination of the data and a very lengthy discussion regarding treatment, our committee of highly competent professionals did not agree nor recommend that the study group be treated.Peter wrote back, but he never heard back, nor did he expect to.And he told me that he kind of put it aside and he regretted it, but he was busy with law school and he just couldn't do this.But I kept eating at him, kept gnawing at him, kept coming back.And he began having discussions with his colleagues and with his professors.
And then in 1972, as you heard, he went to the Associated Press and ultimately Gene Heller.So I started by saying that the study was never a secret.I think this is really important because it wasn't.Over the course of the study, 13 papers were published.And I know we've got a lot of phaps in the room here.There's a portfolio right next door in the library.You can check these papers out.They're all there.The first paper was published in 1936, before the advent of penicillin.But the other 12 were published between 1946 and 1971.
And every single paper states explicitly what was going on.These men were being studied and treatment was being withheld, period.And through that entire period, CDC received one letter from one physician questioning our ethics and morality.So it wasn't hidden.It was hidden in plain sight.
And this Study was completely accepted by the American medical community.But Peter's life experiences led him to immediately identify the story.The study is morally indefensible and to seek justice in the form of treatment for the men.Ultimately he could not relent.And to me for this Peter deserves our respect, our acknowledgement and our celebration.
So age has caught up with Peter.He can't be with us today.Representing him is his very good friend John Seitz.I also have a letter from CDC that I'll ask John to take back.Computer, I got the seating order out
Speaker J
of but John, please.
Speaker Z
Thank you.Dr. Wolinsky, thank you.On behalf of Peter Buxton, I accept this recognition of a single handed efforts to end the CIP study.I'm going to call it the CIPLE study from here forward.Lily, thank you.
It's difficult and bittersweet for me to be here today.Peter's a friend of almost three decades and I'm sad that he cannot be here to accept this well deserved recognition in person.My duty as a friend.I'm here in his place to receive the notice and to try and speak some words which I think he would approve.Heavy weight.
A lot of this is directed to the 71 new public health associates.This will bear with you.Almost over 50 years ago, Peter was flown here to the CDC.He sat somewhere nearby in a room full of physicians and investigators who had much more education and medical experience than he did.Peter was trying to convince them to end the study in the simple knowledge that he had as an army medic and a psychiatric social worker.
He knew that a few doses of penicillin would end the study successful for these people and improve their lives.And he was rebuffed by the room full of luminaries.Eugenics, arrogance, racism, institutional inertia, mistakes, misapprehensions and professional standing trumped the simple knowledge of treating a man for syphilis.Had Peter been successful in convincing that room, he would have probably been a footnote or not even a footnote in history and gone on with his life.But as a few days ago.
Speaker U
All right.
Speaker Z
To this day I hear from his caregivers that even in late stage Alzheimer's disease when the syphilis study is mentioned, Peter will say people got hurt in this.This was something bad.It affected him that deeply, directly to his soul and essence as it should for every person in this room.
But Peter would encourage any health practitioner to do the deep dive into their own thoughts and soul.Even with the knowledge of how poorly man can treat his fellow man, Peter still believed in the ultimate capabilities of man.It was not his style to forcefully expound on that belief, but he would calmly state, if you knew him, you knew his calm voice.Every person deserves to be treated with the utmost respect by medical practitioners in every case, as well as is practicable.It is with this legacy in mind that I became a registered nurse.
And it is with this thought of my friend Peter in mind when I say to you gently, with the utmost
Speaker I
respect,
Speaker Z
that we must all endeavor to listen carefully to those we are entrusted to care for, to consider dissenting voices, to treat as many as we can, as well as we can, as well as we are able.That is the legacy of the study that I take, and I hope that many of us can breathe that life into our practices of medicine.Thank you for recognizing my friend Peter Buxton and for this wonderful opportunity to talk about him.
The Q&A opens with questions about trust, national health insurance, and how institutions can become worthy of confidence in communities harmed by discrimination.
Speaker A
Thank you so much.You all can rise and depart.Thank you so much.Now for the Fun part.Act 5, Q and A.
Please allow me to introduce your Q and a host, Dr. Susan Laird.
Speaker T
Thank you so much.
Some ground rules for the Q and A.Let me remind you, if you weren't in the room when we first opened, that all the questions are to.They're not for CDC staff.You can talk to us anytime.Okay.
We're going to direct our questions to our wonderful visitors.So that's rule number one.Rule number two, microphones are in the back.Microphones are in front.And we'll alternate.
It's important that you don't be the usual polite people that you are, where you always say, thank you so much for this wonderful presentation.Please don't take the Q and A time to do that.We're going to thank everybody at the end.And the second thing, don't go through identifying yourself and where you work.Again, we appreciate that, but we're interested in focusing the time on real questions.
And that last point, this is time for questions, not commentary.So that said, I would invite people to go to the microphones, or if I have a question up front, raise your hand and we'll get started.
Now, I know there are people in this room that really want to ask these folks some questions, and we are ready for that.
All right, I'm going to pose a question myself.There you have it.So any of our visitors or guests can respond to this.Thinking about your experience, what are the thoughts about how the government and national organizations can be viewed as trustworthy by communities that have experienced centuries of discrimination and disenfranchisement?Anybody jump in.
Go for it, Jim.Oh, you want me to repeat the question?Okay.Thinking about your experiences, what are your thoughts about how the government and national organizations can be viewed as trustworthy by communities that have experienced centuries of discrimination and disenfranchisement?So the short version is, given what we've all talked about today and given what you have personally experienced, what do you think we need to do next?
Speaker J
I'd like to change the question.
Speaker T
Go for it.
Speaker J
Okay.So do I speak into this?
Speaker T
Yes.
Speaker J
Okay.Yeah.
The direction I'd like to take it is what can we do as a country to decrease the odds sharply that anything like Tuskegee could happen again?And in addition to all that's been said, the simple point I would make is national health insurance.
If there's a lesson of Tuskegee that rings loud and true, it's that poor people are for sale cheap.They can be so easily.I'm sorry, I'll use the term victimized.And the best wall against that, the best security, is that we can have a national health insurance country policy that gives everyone access to health care, makes it a birthright, and treats them fair.
Questions focus on language, anti-racist work, and CDC's current efforts to advance health equity through community engagement, data modernization, and upstream determinants.
Speaker T
Thank you very much.We have a question in the back.
Speaker U
Hello, Good afternoon.I was just curious and wondering,
Speaker H
are
Speaker U
next steps to changing the name of office of Minority Health going to require the presence of entities in this room?Since we're thinking about equity, why are we continuing to use minority in our institutions?
Speaker T
Anyone want to take that question, Dr. Warren?
Speaker U
Saying folks who are suffering, you can't bypass health.You can't bypass health disparities and go to equity.There are populations historically that have disproportionately suffered from morbidity and mortality unnecessarily.So when we change the language, we change our focus.
Speaker C
I think we still should focus on
Speaker U
what the data tell us.And that data says that black populations particularly disproportionately suffered.
Speaker T
Thank you.
We have a question on this side.
Speaker N
Thank you.My question is.My comment first is racism is at the heart of what we've talked about.Much of today the CDC is engaged
Speaker L
in anti racist work.
Speaker N
And so my question to our visitors is, what are some recommendations that you
Speaker I
can give CDC that could advance our
Speaker L
anti racist work in any area that you think is important?
Speaker T
Anybody?
Doctor Dawes, I think you have a response.Thank you.
Speaker X
I was trying to figure out how to turn this on.So, great question.As you know, Dr. Walensky made a national declaration that racism is a public health threat.
And this, I think, followed the President's executive order.His first executive order was on advancing racial health equity.And so in light of that, Dr. Wielinski had charged the advisory committee to the director to think about how we could, or how they could advance health equity, how they could address racism both internally and externally.And we convened a working group, our health equity working group, that was composed of members of the acd, those who are external champions.It was really a diverse group of backgrounds, educational levels, geographic representation, multiple statuses, if you can, and the three main areas that have come out of our working group thus far.
One centered on how we can bolster community engagement, especially engagement in communities that have disproportionately been impacted by these isms.The second one looked at data modernization.How do we address the gaps in the design of our data platforms
Speaker D
in
Speaker X
terms of how we collect, report out standardized data?
And then the third piece looked at the upstream determinants of health.So there we're focused on what really has collectively instigated the health outcomes and the inequities downstream.So those are three areas.We're still working on them.Happy to share that once we get the approval of the cdc.But that's basically our focus on how to pass or push the agenda for the cdc.
Mrs. Head explains how descendants are organizing to transform the legacy of Tuskegee into honor, triumph, and trustworthiness for future generations.
Speaker T
Thank you very much.
Speaker A
Question here.Good afternoon.
Speaker D
In conjunction with Dr. Gray's remarks stressing the importance of ensuring the men involved in the studies.
Speaker A
Requests are honored.
Speaker D
What are the current efforts taking place to ensure the request of the descendants are being honored?How is our integrity to the men
Speaker E
being passed down to their generations at this time?
Speaker T
Ah, maybe.
Mrs. Head, that sounds like a question for you.
Speaker G
Thank you for your question.
Can you still hear me with my back turned to the mic.I have the mic, but I would have you do I understand.
Speaker A
Yes, ma'.
Speaker U
Am.
Speaker E
Can you hear me now?Yes, ma'.
Speaker A
Am.
Speaker G
Okay, first of all, thank you for your question.The descendants are now organized as a collective group in solidarity with all those who would like to support us, to honor the men.
And as we honor the men, we are transforming that legacy from shame and trauma to honor and triumph.And we are not leaving the men in that space that they were in with the state as being full, un uneducated cadavers.But we're honoring their legacies and their contributions to the health field.So in doing that, in honoring them, we're honoring ourselves and we are recognizing, we are also using that platform to help to build the trustworthiness that's so needed in our health care system and also to be able to look at the possibilities of changing the way Things have done.And we're hoping that this event will be the lightning bolt that will change the landscape of past racial and discriminatory health practices.
The final question asks how to change the political agenda, and Dr. Curran argues that real reform requires outside pressure, voting, and public action.
Speaker G
Thank you.
Speaker T
This is our last question.
Speaker S
Over here, Cheryl Herron, Emory University School of Medicine Chief Diversity Officer.My question really comes down to courage and commitment as we stand in the middle of an election and political time where changing policies, practices and laws are important.So my question is, as I'm sure people in here are ones who know the story, how do we encourage, engage and pull people into the story to change the political agenda to make health equity what it needs to be?
Speaker T
What a great last question.And who would like to tackle that one?
Jim Curran, how about you?
Speaker Q
That was a setup for my friend Dr.
Speaker J
Herring.
Speaker Q
I'd say one thing this fits also with a lot of the other issues about Tuskegee and other things is you can't trust the government.And when I say that, it doesn't mean that the government isn't a wonderful thing and that there aren't the best 14,000 or 15,000 employees at CEC we've ever had.It just means you cannot change within government.
The change usually has to come from outside government.There has to be.There has to be a Peter Buxton.There has to be people like Fred Gray.Have to be people like ACT up.
There have to be people who want to reform our horrible health financing system in the United States.Our health financing system is so utterly discriminatory and racist and poverty disinclined, as you know, from working at Grady, that almost everything else is in the way of it.So who's going to change that?The CMS won't.HHS won't.
It has to be done by people outside those agencies to force change, and then you can trust the agencies to implement the change.So it means that you gotta vote and you gotta change things, and every vote counts.Anybody who hasn't voted here today should run to the polls when you leave, because change is gonna come outside government, and then the people in government and the agencies will implement that change.
The event closes with thanks to organizers, work groups, universities, and staff who made the commemoration possible, ending on a note of gratitude and continuation.
Speaker T
Thank you so much.
Before I turn the mic back over to Dr. Smith, on behalf of our very small work group, thank you to Dr. Smith for her leadership.This has been a labor of love.
Our small work group has worked very hard for.I've been engaged since July, so you can imagine before they even brought me into the fold how long this group has labored to try to make this happen.So thank you.I have no flowers for you.I wish I did.
Thank you so much.
Speaker A
Thank you.We are done with questions.However, if you want to go on and share it, what we can do is make sure we get a response to your question separately.
Speaker J
Sure.
Speaker I
Hi.So folks up front have spoken about
Speaker W
a notion among pHs in the study
Speaker I
of a war against syphilis of officers
Speaker W
and generals, masculine conceptions of government action more generally.
Speaker X
So I'm man, but many of my
Speaker I
colleagues here are not.So I was wondering how to be
Speaker W
what was the impact of gender in
Speaker I
shaping the course of the study in Tuskegee and how to be mindful of
Speaker W
this in public health work going forward.
Speaker A
That is a perfect question.I actually know who could answer it.However, I have to respect the time.And we will get a response to your question.You're a phapper, correct?All right, we'll definitely get a response to your question.
Speaker W
Thank you.
Speaker A
Thank you.
Thank you so much, Dr. Laird, for being the hostess with the mostest for the Q A.And thank you so much to our discussants and to those who asked questions.And I don't know why I'm getting low now, but I'll speak up.So again, thank you all so much.Dr. Deborah Oury was going to provide us a charge out the door, but she also had to charge out the door herself to catch a flight, so she was unable to be with us to provide that charge.But what I will say is this.We have a lot of young minds in the room, a lot of seasoned minds in the room.And what I will say is I hope that those young minds took those seasoned minds and those thoughts and have planted seeds in you and that you're able to grow those and continue to do what they're saying in terms of creating truth, equity and the work that we do as public health professionals.
Speaker K
You all are the future.
Speaker A
And we are so happy that you're here with us today.
I also want to acknowledge there are two other universities who took the time to put this particular program on their schedules, too, so their students are also watching online.So that's Duke University and as well as Ole Miss.So thank you all out there, too, for doing that.
So I want to again thank the discussants.Let me show a quick list of all of our wonderful discussants.I must also take the time and say thank you to some very special people, for without them, this event would not have been possible.First, the 50th Recognition Work Group.Karen Bouillier.Katina Connor.Paula Erickson.Ann Renee Hennenberg.Susan Laird.Mary Linehouse.
Leonard Ortman.Christopher Parker.Ted Pistorius.Hillary Polk.Tony Richardson, Joe Valentine and Paul Young and to their family members.And I'll call out two specifically who had to listen to our mouths a lot, and that is David Laird and Ola Smith.Ola Smith being my mom, David Laird, Susan's husband.So thank you all so much.I would also like to especially say a big thanks to our advisory group, especially Mr. Robin Bailey, who was truly the wind beneath this program's wings.Thank you, Robin, for your vision and your leadership and I'm so sorry that you're unable to be here with us today.
Thank you to all of oku.Let me tell you, OKU stood up for this program and they were here for us.So thank you so much to oku, Michelle Lynch Sujada out in Blinman and Deidre Tutman, who helped actually get our travelers here, here in the office of the Deputy Chief of Staff as well as also the chief of staff as well as NCHSP's Office of the Associate Director for Communications, who is housing our website.So please do check that out if you have not already.Generally speaking, everyone who played a role, big or small, thank you so much.
Please keep an eye on our webpage because we're going to be continuing updates, including making sure that this particular event is posted as soon as possible.We hope that this will not be the last event that we do like this because we really, really enjoyed having you all here and the amount of information that we were able to retrieve.This is wonderful.This is the only way that we're able to kind of keep this going.So lastly, could everyone please give a round of applause for this wonderful event, our wonderful director, and just thank you all for being here.I really appreciate you.Have a wonderful day.