Harms and Healing

Health Equity

To live is to be in relationship with one another. Those relationships may be as close and personal as family or as distant and impersonal as merely inhabiting the same planet.

To be in relationship is to have the capacity to harm or heal one another. In cases of harm, the consequences require taking responsibility.

The harms of racism — discrimination based on membership in a racial or ethnic group — run deep in America. Differences in income, lifespan, medical treatment, incarceration, educational attainment — even differences in hope — trace back to the institution of slavery, which the framers of the American Constitution accommodated in spite of their desire to create “a more perfect union.”

These harms are so rooted in our society that many white Americans perpetuate them without intent. They have never faced the self-doubt that comes from wondering if — or knowing that — they were treated differently because of the color of their skin. They have never had to train their kids to protect themselves in the face of authority.

However, recently more white Americans, and institutions, have been exposed to the entrenched nature of these harms and have had to confront their own participation in them.

This is the case for the Milbank Memorial Fund. A constellation of events — the murder of George Floyd, the Black Lives Matter movement, and staff organizational development work on diversity, equity, and inclusion — created a moment for us to carefully examine our history. What we found was deeply disturbing and counter to our mission and values. This experience has placed us on an important journey, the very first step of which is to acknowledge our role in the United States Public Health Service Syphilis Study at Tuskegee and Macon County Alabama.

A constellation of events…created a moment for us to carefully examine our history….This experience has placed us on an important journey, the very first step of which is to acknowledge our role in the United States Public Health Service Syphilis Study at Tuskegee and Macon County Alabama.

From 1935 until 1973, the Fund paid for services associated with the burials of men who died in the course of the study. The funds included burial stipends that were used to incentivize their families to consent to autopsies. The details of the Fund’s involvement can be found in a report we commissioned from historian Susan Reverby, PhD. Although the Fund’s role is publicly documented, we have never acknowledged it openly and publicly, until now.

The study was unethical and racist. Participants were not asked for consent, were told they had “bad blood,” and were deliberately deprived of curative treatment. The study remains a particularly corrosive example of the untrustworthiness of the US health care system for Black people and other people of color. The study was not aligned with our mission when our predecessors on the Board of Directors chose to be involved, and it is certainly not aligned with our mission now.

The Fund caused harm, and we are deeply sorry.

Unlike the families of the men in the study and other Black people in United States, the Fund could turn its back on the harms it participated in and consign them to an unfortunate past. And we did for 50 years. This is how systemic racism is perpetuated — by neglect, distance, and accommodation.

Only when the harm is acknowledged is healing even a possibility. The Fund has embarked on this path of confession and healing. In April 2021, after the Fund’s current board of directors was apprised of the Fund’s role in the study, a dedicated committee called for investigation, reflection, and apology. Our Racial Equity Statement of Purpose, published today, is the next step in this process and makes clear that addressing racism is essential to achieving health equity and to authentically achieving the Fund’s mission of improving population health.

The Fund’s Racial Equity Statement of Purpose commits us, in part, to documenting and understanding our past. One lesson from this is the importance of having a diverse Board of Directors whose members do not have vested interests in the Fund’s work. For example, the Fund’s long-term affiliation with Thomas Parran, a former US Surgeon General and past technical board member of the Fund, likely contributed to our involvement in the study. As a result, we are examining and reforming our organizational and governance practices to become more diverse, equitable, and inclusive. The Fund is centering the foundational role of health equity for population health improvement in our state leadership and population heath improvement programs and communications.

Hold us accountable to these commitments in one year, or five, or a generation.

But for harm to be acknowledged and healed after the passage of time, the relationship itself must be affirmed. To that end, the Fund has established a working partnership with Voices for Our Fathers Legacy Foundation (VFOFLF), an organization formed by descendants of men in the study. VFOFLF exists to honor the legacy of the men in the study and to create more trustworthy health systems by “building a bridge from mistrust to trust.”

The Fund has formally apologized to members of VFOFLF. We are making a material financial contribution to the organization to endow its work and developing a longer-term partnership to support our missions.

Ms. Lillie Head is the president of VFOFLF. Her father, Freddie Lee Tyson, was a participant in the study. When his role in the study was disclosed to him, Mr. Tyson said to his daughter, “I can’t do anything about what has happened to me and all of those other men, but it is up to you all to make sure nothing like this ever happens again.” Today, VFOFLF offers a scholarship fund for descendants entering the health care field and is planning a Memorial and Inspirational Garden to honor the legacies of the men in the study. Recently, members of VFOFLF recorded a powerful series of public service announcements encouraging people of color to be vaccinated against COVID-19.

I first called Ms. Head, appropriately, on Yom Kippur last September, the Jewish day of atonement, when, as described in the book of Leviticus, Moses came down from Mt. Sinai to pronounce a day of atonement for the people’s sins.

Subsequently, I introduced the Fund, explained my reason for calling, and voiced our sincere regret. At her request, the Milbank Memorial Fund apologized in writing and then in person with the VFOFLF Board of Directors. At that meeting, each member in attendance introduced themselves by describing their family’s connection to a man in the study — someone directly harmed by the Fund’s actions. At her request we also extended the apology to descendants attending the Foundation’s Annual Meeting in November.

After the November meeting, Ms. Head said members were receptive to the Fund’s apology. “Your actions are important,” she continued. “The Milbank Memorial Fund did something that was terribly wrong. You voluntarily contacted me to apologize and say that you are sorry that the organization had supported the United States Public Health Service syphilis study. I accept your apology. You will try to do better.”

And so we will.

VFOFLF’s acceptance will be forever humbling. It is not exoneration. There are concentric circles of people harmed by the syphilis study. We at the Fund owe it to them to follow through on our commitments to learn from our errors in perpetuating systemic racism, change the way the Milbank Memorial Fund is governed and organized, and transform the work it does.

There are wide swaths of our society harmed by systemic racism. All are deserving of a fair opportunity to live healthy lives.

Injustice harms not only the victim but also the perpetrator, who lives isolated from the wholeness of a full and inclusive community. The work of admitting harm and of pursuing healing, of building a more just society — where the fundamental dignity and relationality of every human being is affirmed and where love in all its forms can grow — calls us all.