New York Fund Apologizes for Role in Tuskegee Syphilis Study

BIRMINGHAM, Alabama. – For nearly 40 years, beginning in the 1930s, when government researchers deliberately allowed hundreds of black men in Alabama to die of syphilis so they could study the disease, a foundation in New York paid for the funeral expenses of the deceased. The payments were vital to the victims’ survivors at a time and place ravaged by poverty and racism.

As altruistic as they sound, the checks — no more than $100 — were not a simple act of charity: they were part of an almost unimaginable plan. To get the money, widows or other loved ones had to agree to doctors cutting up the bodies of the dead for autopsies that would describe the ravages of a disease said to be “bad blood.”

Fifty years after the infamous Tuskegee Syphilis Study was released to the public and halted, the organization that made those funeral payments, the Milbank Memorial Fund, publicly apologizes to descendants for their role. The move is rooted in America’s racial bill following the police killing of George Floyd in 2020.

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The apology and an accompanying monetary donation to a descendant group who Voices of our Fathers Legacy Foundationwill be presented Saturday in Tuskegee during a gathering of children and other relatives of men who were part of the study.

Founded in 1905 by Elizabeth Milbank Anderson, part of a wealthy and well-connected New York family, the fund was one of the first private endowments in the country. The nonprofit philanthropy had approximately $90 million in assets and an office on Madison Avenue in Manhattan, according to tax records as of 2019. With an early focus on child welfare and public health, it now focuses on state-level health policy.

The fund’s current president, Christopher F. Koller, said there was no easy way to explain how its leaders decided to make the payments in the 1930s, or to justify what happened. Generations later, some black people in the United States still fear government health care because of the so-called “Tuskegee Effect.”

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“The result of that was real damage,” Koller said in an interview with The Associated Press. “It was another example of men being deceived in the study. And we act as individuals, as a region, as a country, with the effect of that deception.”

Lillie Tyson Head’s late father, Freddie Lee Tyson, was part of the study. She is now president of the group Voices of our Fathers. She called the apology “a wonderful gesture and a wonderful thing,” even though it comes 25 years after the US government he apologized for the study to the last survivors who have since all died.

“It’s really something that could serve as an example of how powerful apologies can be in making redress and restorative justice real,” Head said.

Despite her leadership of the descendant group, Head said she wasn’t even aware of Milbank’s role in the study until Koller called her one day last fall. The payments have been discussed in academic studies and some books, but descendants were unaware, she said.

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“It was really something that surprised me,” she said. Head’s father, after becoming suspicious of the research, left the study years before it ended and received no money from Milbank, she said, but hundreds of others did.

Other prominent organizations including universities Harvard and george town and the State of California have acknowledged their links to racism and slavery. Historian Susan M. Reverby, who has written a book about the study, researched the Milbank Fund’s involvement at the Fund’s request. She said her apology could set an example for other groups with ties to systemic racism.

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“It’s really important because at a time when the nation is so divided it’s so complicated how we deal with our racism,” she said. “It’s difficult to deal with and they didn’t have to do this. I think it’s a really good example of history as restorative justice.”

Beginning in 1932, government medical workers in rural Alabama refused treatment to unsuspecting black men infected with syphilis so doctors could track the disease and subsequently dissect their bodies. About 620 men were examined and about 430 of them had syphilis. According to Reverby’s study, Milbank spent a total of $20,150 on about 234 autopsies.

Revealed by The Associated Press in 1972the study ended and the men sued, resulting in a $9 million settlement descendants of whom still seek the remaining funds, which court filings describe as “relatively small”.

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The Milbank Memorial Fund got involved in 1935 after then-US Surgeon General Hugh Cumming sought the money crucial to persuading families to consent to autopsies, Reverby found. The decision to approve the funding was made by a group of white men who had close ties to federal health officials but had little understanding of conditions in Alabama or the cultural norms of black Southerners who valued dignified burials, Koller said.

“One lesson for us is that you make bad decisions if … you don’t have particularly diverse perspectives and don’t consider conflicts of interest,” says Koller.

Payments became less important when the Depression ended and more black families could afford funeral insurance, Reverby said. Originally named as a defendant, Milbank was dismissed as the target of the men’s lawsuit and the organization moved on from the episode.

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Years later, books such as Reverby’s Examining Tuskegee, The Infamous Syphilis Study and Its Legacy, published in 2009, detailed the Fund’s involvement. But it wasn’t until after Floyd’s death at the hands of Minneapolis police that discussions among Milbank employees — who are now much more diverse — prompted the fund’s leaders to reconsider its role, Koller said.

“Both employees and the Board felt we had to face this in a way we’ve never done before,” he said.

Alongside a public apology at a gathering of descendants, the fund decided to donate an undisclosed amount to the Voices of our Fathers Legacy Foundation, Koller said.

The money will provide scholarships for descendants, Head said. The group also plans a memorial at Tuskegee University that served as a conduit for the payments and was the site of a hospital where medical workers saw the men.

While times have changed since funeral payments were first approved nearly 100 years ago, Reverby also said there is no way to justify what happened.

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“The records say very clearly, untreated syphilis,” she said. “You don’t need a Ph.D. to find out, and they just did it year after year.”

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Reeves is a member of AP’s Race and Ethnicity Team.

Copyright 2022 The Associated Press. All rights reserved. This material may not be published, broadcast, transcribed or redistributed without permission.

https://www.local10.com/health/2022/06/11/new-york-fund-apologizes-for-role-in-tuskegee-syphilis-study/ New York Fund Apologizes for Role in Tuskegee Syphilis Study

Sarah Y. Kim

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