Child and adult immunization.
There are things that ought to be there and aren't, like violence, but the fact that HIV made the cut is extremely important. If you look at the other items on the list, that have been there for a long time, they will not generate the kind of momentum necessary to break down the walls that are coming between far too many African-Americans and high-quality healthcare. HIV will do that. HIV is our door to quality healthcare in this country. HIV will be the new battle line. That's where the civil rights movement will progress.
There have been victories in the fight against AIDS, and we should celebrate them. But recent CDC figures show both the victories and the challenge. From 1985 through 1997, HIV infection among white, non-Hispanic individuals decreased. That's evidence of success. That community did what was necessary to change the trend. We know what to do to slow down this disease, and the gay community has demonstrated it. What black people need to understand is that the core of the playbook used by the gay community was borrowed from the black civil rights movement. And I'm including ACT UP, which I think of as the Black Panther Party of AIDS.
But while HIV infection was falling among white non-Hispanics, it was on the rise among black non-Hispanics. In 1997, more African-Americans were reported with AIDS than any other racial or ethnic group. Of the total AIDS cases reported that year, 45 percent were among African-Americans, compared with 33 percent among whites and 21 percent among Hispanics. Approximately one in fifty African-American men and one in 160 African-American women are believed to be infected with HIV.
Therein lies our challenge. The epidemiologists have done their job. They have documented the trends. If all it was was numbers, the resources would have been dedicated to the African-American community long ago. But it's about giving voice to our suffering, and giving advocacy to what we know can make the difference.
I believe we need a global perspective. We have all heard about the devastation this virus has caused on the African continent. Of the 33.4 million adults and children estimated to be living with HIV/AIDS worldwide as of the end of 1998, sub-Saharan Africa accounts for an incredible 22.5 million.
I think that we black people here in America are the hope for Africa. We survived the Middle Passage that brought us into slavery in a new world. We are here now. We are in the richest, most scientifically advanced nation in the history of civilization. We need to take what we know that works, and take it back along the same channels that brought us here. It's time to reach back along the Middle Passage.
The Legacy of Tuskegee
According to Dr. Eric Goosby, Director of the Office of HIV/AIDS Policy, "Conquering the HIV/AIDS epidemic in the African-American community will demand creation of improved programs which will focus on prevention, HIV testing, counseling, and treatment."
Closing the gap, conquering this epidemic in the African-American community, is all about healthcare. It's time we made our presence felt in the biomedical research community, demanding access to the best medical science has to offer. That's how the gay community made a difference. They broke down the doors of the pharmaceutical companies. They called them names. They demonstrated. They sat in. They literally changed the way new drugs are approved. It is absolutely unbelievable what they accomplished.
And now African-Americans need to realize that those paths have been made, and we need to avail ourselves of what medical science has to offer.
Part of the challenge is overcoming the legitimate mistrust of a healthcare delivery system that has used and abused black people. In any medical ethics course, there are minimum examples of research abuse that have taken place over time:
- Nazi experimentation. During World War II, the Nazis conducted horrific experiments on concentration camp prisoners.
- Willowbrook State School. Mentally retarded children were purposely exposed to hepatitis.
- Jewish Chronic Disease Hospital. Elderly patients were injected with live cancer cells without their consent.
- Milgram studies of obedience. Stanley Milgram's studies of obedience in the 1960s were called unethical because of the potential for psychological damage caused by research subjects being told to deliver "bogus" dangerous electrical shocks to other participants as punishments for wrong answers to a set of questions.
- Human radiation experiments. In the 1950s and early 1960s, the United States government conducted almost 100 atmospheric nuclear tests at the Nevada Test Site. These tests released radioactive iodine-131 and a variety of other radioactive substances into the environment. The people downwind of the tests and others across the country were exposed to these cancer-causing agents in the air, water, and milk.
- Tuskegee Study.
I suggest that Tuskegee is uniquely African-American. And I suggest that the pain and suffering that puts Tuskegee on this list also gives black people some moral authority in the area of ethics.
The legacy of the Tuskegee Study is not only a shadow on our efforts to prevent the spread of HIV, but also a source of strength for demonstrating exactly what works to stem the tide of this disease.
I suggest that the participation of African-Americans in AIDS research is critical. More black people must be involved in clinical trials. That's the front line of new therapies. The cure for AIDS will come from the next wave of research, and the participants in that next wave need to be people who have not been exposed to a pharmacopia of medications. And who are these people?
Black folks who have been waiting on the sidelines all this time may well have waited long enough to gain access to the best science can offer. But we have to be part of the solution. The cure will come from populations who have not been exposed to AZT and other drugs. And those populations, in many cases, are black.
But the skepticism and distrust is there. In 1991, my colleague Sandra Quinn and I conducted a study among African-Americans in five cities. We found almost a third of the people we interviewed at least wondered whether the epidemic was a genocidal plot to eliminate the black race.
I do not believe that advocates going into vulnerable populations should try to disarm them of their skepticism and their reluctance to participate. These are, historically, matters of survival. So black folks have been late getting onto the triple therapies, or even the AZT bandwagon. Now is the time for the AIDS advocates, the civil rights activists, the churches holding the line on trust and ethics, to encourage and recruit black people into clinical trials.
"Tuskegee" has become a code word for treating black people as objects in medical experimentation, a means to an end, less than human. The Tuskegee Study today transcends its historical time and geographical context to emerge as a metaphor for racism in the context of research. Some AIDS clinical trials that were going on in Africa were stopped, in large part because advocates said they were "like Tuskegee."
Tuskegee is a red flag for bioethics. It must be raised whenever researchers are dealing with vulnerable populations, when issues of trust, justice, and especially race are important.
And black people in this country, no matter how much money they may have, are vulnerable. We've seen it with the history of sickle-cell disease. Even middle-class black folks feared losing their jobs if they were stigmatized as having the trait. We have to get over this separation, this attitude that "we're black middle-class, and they're injection drug users," or whatever ways we use to distance ourselves from each other. Regardless of who we are or what we have, the black people suffering from AIDS are our sons and daughters.
So where do we go from here?
We must seize the opportunity to set an agenda we then implement and hold ourselves accountable to. We cannot sit back and wait passively.
According to the National Institutes of Health, "The behavior placing the public health at greatest risk may be occurring in legislative and other decision-making bodies." It is unconscionable that needle exchange remains an area where by law we are prohibited from using government funds. By law! Even though we know needle exchange helps prevent the spread of AIDS. Even though we know it does not contribute to drug abuse. Even though the nation's leading scientific bodies have said so.
Science has done its job. We must move beyond science. We must recognize that stigma is a major problem, and work to eliminate it. At last September's "Break the Silence" health expo in Harlem, for example, the Rev. Dr. Calvin O. Butts III, senior pastor of the Abyssinian Baptist Church, and actor Dennis Haysbert of CBS's Now and Again were publicly tested for HIV.
Distrust of the research establishment is legitimate, but it doesn't mean that we should not engage the system to gain access to the care we deserve. We must recognize that racism and poverty are real, and that they have a very real effect on the attitudes of providers.
We must deal with an often painfully slow response on the part of traditional institutions. I have seen ministers finally see the light, and stand in their pulpits asking forgiveness from the mothers and sisters and brothers of the people they have refused to bury. Just the word "church" is not a guarantee of compassion. Hold the churches accountable. Support organizations such as Balm in Gilead, whose example of an indigenous AIDS support program has swept the nation.
Support the things that work, and scrap the things that don't.
The Lessons of Tuskegee
What have we learned from Tuskegee? How can we use it to prevent new Tuskegees, and to arm ourselves in the fight against AIDS.
Interviews that I have seen with survivors of the Tuskegee Study took place in the same church where these men were recruited in 1932. Black people still own the churches. What else do we own? We own the barber shops and the beauty shops. We own gospel music. One of the leaders in gospel music who has fallen to this disease is James Cleveland. But we have no tribute. Where is the gospel CD for AIDS prevention? People in gospel music know that their leaders have fallen to this disease, and yet they're afraid that if they say "James Cleveland" and "AIDS" in the same breath people will stop buying this music. We must make that a lie.
And there were methods used in Tuskegee that we can and should borrow:
- Effective collaboration across all levels of government and the private sector,
- Outreach to faith communities and workplaces. The men of Tuskegee were recruited in their churches, and their blood was drawn in the plantation cotton fields. That's the kind of cooperation that went on.
- Sensitivity to local culture and customs. They said "bad blood." If they had said "syphilis," no one would have come out to participate in the study.
- Use of indigenous healthcare workers. Eunice Rivers, the PHS nurse, kept these men together for forty years. She was the glue. And when the story broke, she was called a traitor. And many black people fear that, just maybe, the knowledge they have about their communities could be used to abuse the communities, that they too could become traitors. So we need to acknowledge that fear and that concern.
- Use of incentives. It's legitimate, if used legitimately. But we must recognize the power of incentives to coerce.
- Commitment of resources to sustain the effort over the long term. Tuskegee lasted forty years. We're still faced with grants that have two- and three-year cycles.
In another context, former Archbishop Desmond Tutu of South Africa has said, "It is not what is done to us that matters, but how we take what is done to us."
The anger that we feel -- what do we do with that? What do the people in our communities do with that? Do they follow public health guidelines and use sterile needles and not share? Do they get tested and find out their status and go for care? Or do they say that it's all a big hoax? And die.
"It is not what is done to us that matters, but how we take what is done to us." This is our opportunity to demonstrate to America that black people are survivors.
"What was done cannot be undone, but we can end the silence. What the United States government did was shameful, and I am sorry."
On May 16, 1997, a quarter century after the story became widely known, President Bill Clinton issued a formal apology for the Tuskegee Study of Untreated Syphilis in the Negro Male.
During the ceremony in the East Room of the White House, the President directed his words to Carter Howard, Frederick Moss, Charlie Pollard, Herman Shaw, Fred Simmons, Sam Doner, Ernest Hendon and George Key, the study's sole survivors. All of these men were by then over 90 years old, and five of them were present for the occasion.
Clinton and the others present experienced forgiveness from men who had suffered at the hands of Public Health Service doctors. The President placed responsibility for the abuse on the medical research establishment, stating, "The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair." Clinton announced that the government was providing a $200,000 grant to help establish a center for bioethics in research and health care at Tuskegee University as part of a "memorial" to the victims. Herman Shaw expressed gratitude to Clinton "for doing [his] best to right this wrong tragedy and to resolve that Americans should never again allow such an event to occur."
Parts of Macon County still look like they did in 1932. The route to Tuskegee Square pushes past shaky mobile homes and a decrepit motel, between eroding embankments of red clay that look like gashes of flesh. The eight survivors of the study have lived long enough to see what we hope is the final chapter in the history of race and medicine in America. Today, however, they remain economically poor, living in the same town and attending the same churches where they were recruited in 1932.
For many black people, the Tuskegee legacy generates anger that hangs in the air like smoke. People are not laboratory animals. No one should suffer when a proven treatment is available, as penicillin was for syphilis by the early 1940s. Using people in medical research without their informed consent, and engaging in subterfuge to do so, is ethically unconscionable, particularly when the people are vulnerable and lack access to any other medical care.
Remarkably, some people still say the Tuskegee Study was a valid and well-intentioned effort to learn more about a disease that was rampant among black men in Macon County. They say the men were not harmed and probably were helped by taking part in the study. The government doctors were viewed as progressive, compared to local physicians. The Rosenwald Fund, which financed the study, was dedicated to increasing the number of "Negro" health professionals in the South. It is ironic that during the study the men had regular visits from government doctors, while today Tuskegee has no 24-hour healthcare. The men in the study trusted their doctors; today, syphilis remains an epidemic in areas where many black people do not trust the treatment.
For many African-Americans, the Tuskegee legacy casts a shadow over biomedical research, medicine, and public health practice. It is used as a reason not to take advantage of early treatment for preventable diseases, not to participate in clinical research. The underrepresentation of blacks as blood donors, their reluctance to sign organ donor cards, their fear of being tested for AIDS, and their hesitancy to have their children immunized threatens the health and well-being of us all. Trust, once given unconditionally, now must be earned. How can black people trust what their doctors tell them, what public health agencies tell them, when they know the men in the Tuskegee Study had syphilis and were not treated?
Regaining Trust -- The First Step
Rebuilding trust begins with an apology from a president who was not even alive in 1932. Over the years, the Tuskegee legacy has undergone transformation from science to conspiracy to metaphor. It is an American tragedy made of a volatile confluence of race and medicine. It is part of the collective memory of many African-Americans, fueling suspicion and fear toward medical and public health research. It is still being deeply woven into the tapestry of American life. An indelible pattern is evolving as each of us responds to the contingencies and values exposed by Tuskegee. In a way, the legacy connects us to all people who have suffered or continue to suffer under oppression -- from Africans on the Middle Passage, to Native American tribes forced to extinction, to Holocaust victims, to survivors of apartheid.
An apology is an expression of our humanity, a balm on the sores of resentment and retaliation. It will not heal all wounds, but it is an essential gesture in the healing process and a cue to action for the rest of us to move toward atonement and racial reconciliation. It may be the first step in addressing the fear and mistrust that shape the behavior and attitudes of many African-Americans, not only toward participating in medical research but also toward receiving the healthcare they need and deserve.
-- Stephen B. Thomas
Stephen B. Thomas is Associate Professor of Community Health at the Rollins School of Public Health at Emory University. He has written extensively on AIDS in the African-American community. In 1997, he represented Emory University at the Presidential Apology to survivors of the Syphilis Study at Tuskegee Institute. This is his first contribution to Body Positive.
The author wishes to acknowledge the contribution of Dr. Sandra Crouse Quinn, Associate Professor in the School of Public Health at the University of North Carolina, to the research that has informed his work on AIDS in the African-American community. Portions of this article were presented in another form at the 1999 National Conference on African-Americans and AIDS.
Back to the January/February 2000 Issue of Body Positive Magazine