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Paragon of African-American Medicine Cites Progress, and Concerns, on HIV Among Blacks

Q+A with Dr. Louis W. Sullivan, former Secretary of the U.S. Department of Health and Human Services

Dr. Louis W. Sullivan 

About Dr. Louis W. Sullivan

What is the most critical AIDS issue facing the African-American community? What is the best way to address it?

Even after all these years, I think there is still a denial, or ignorance, that HIV/AIDS is a serious health threat to most African Americans.

I am a firm believer that public education programs that are broadly available, accurate and accessible will get the message across. We need to keep getting out the facts about how HIV is -- and is not -- transmitted, and what it does to the body. And we need to keep communicating the message of testing, knowing your HIV status and protecting yourself and others.

For young people who are not yet sexually active, we can encourage them to delay the onset of sexual activity. But they still need to be informed of the basic facts of HIV/AIDS.

For people who are sexually active, we need to emphasize HIV testing, to assist them in learning how to disclose their status and negotiate safer sex, and to reinforce the importance of condom use.

But it remains a strong challenge to make people believe that the risk of HIV applies to them -- and then to motivate behavior change. It may even be harder now that the disease can be managed so much better with treatment.

What are the top myths about HIV you encounter in the African-American community?

It is very troubling that certain myths about HIV have persisted for so long in the African-American community. I think the most significant is not so much a myth but more a function of denial -- the idea that HIV is not a heterosexual disease, that it is restricted to gay men or to drug users.

As we know, rates of HIV are rising faster among African- American women than any other group, and the epidemic in the developing world is largely a heterosexual one. But many heterosexual African Americans do not seem to be making the connection. Again, public education is crucial in breaking through this denial.

I also am concerned about myths that derive from the community's historical mistrust of the medical system based in a well-documented discrimination and neglect. The myth that HIV is a disease created in the lab by whites to get rid of blacks still rears its ugly head. But more pernicious than that, I think, are the fears that some African Americans express about getting tested or getting treated.

It's a situation in which very realistic and appropriate anxieties about actually testing positive or experiencing side effects are exacerbated by this generalized mistrust that, "The testing centers give you AIDS," or, "The drugs make you sicker than the disease." It's a very unfortunate situation, but I do think as more and more African Americans have good experiences with testing and treatment, reality will put these fears to rest.

Where is the most progress being made in combating the epidemic in the black community? Where is the least progress?

Let me stick to what I know best, which is medicine. It is worth being mindful that we do not yet have a cure for this disease that has infected 40 million people around the globe. I, for one, believe that even with all of its tricks -- its capacity to mutate, for example -- this retrovirus will be solved, but a great deal of progress needs to be made in that direction. When I was secretary of the Department of Health and Human Services [HHS], there was talk that we would have a vaccine in five years. So I would not like to estimate a timetable for a cure, but remind all of us that we must aggressively pursue it.

Despite that, there's no question that great strides have been made in the medical management of the disease. When I was at HHS, there was really only one drug, AZT [zidovudine, Retrovir], and it was very expensive. We worked with Congress and advocates to create federal assistance programs so that most patients who needed it could get it. Now we have almost 30 drugs, and, for that, federal assistance is mostly still in place. Treatment has proved very effective in prolonging lives, restoring health and allowing people to return to work, have children, raise families and be productive members of society. And that's wonderful.

Do you think activism is an effective way to fight the epidemic?

Yes, activism can be a force for change. When I was the secretary of Health and Human Services, AIDS was a political maelstrom. There was a sense of panic, especially in the gay community, which led to vigorous demonstrations by groups like ACT UP. They expressed a feeling of mistrust in the government and the medical system -- a demand that much more should be done and could be done. These street protests definitely led to progress by heightening the sense of emergency in the media and the public.

However, I must say I'm pleased that we don't have those demonstrations anymore, because I think that's a sign that the mistrust has mostly vanished. The activists were heard and taken seriously by many of us in government and in the industry, and a much more collaborative, constructive relationship has developed.

Of course, as the head of HHS, I was on more than one occasion the focus of activists' mistrust and anger. I remember going to the International AIDS Conference in San Francisco on behalf of the Bush administration to deliver what I thought was a strong message of conciliation, and I was literally drowned out by shouts and yelling. I recognized that as the government official who represented the president, this came with the territory, but I thought it was very unfortunate that this message of conciliation could not be communicated.

What are your hopes and fears for the next generation of African Americans as they face the risks of HIV?

My main fears are focused on this denial that they are really at risk and the ignorance about how the virus is transmitted.

I also have some concern that the epidemic among African Americans is not getting the kind of attention that the epidemic in Africa gets. Granted, it is a raging inferno in sub-Saharan countries. In India and China we are also looking at a cataclysm. So, in a sense, no amount of attention is too much. And we do have a better health care system that provides treatment to most Americans with HIV who need it. But the statistics and trends are very troubling in the African-American community, and we need to get a grasp on what is happening right here in our own backyard. In addition, there are lots of people traveling back and forth between Africa and the African-American community, which presents more opportunities for transmission and increases the need for education and prevention.

Last but not least, I hope that, in terms of doing HIV prevention, we will move beyond all the political debates and treat it in a more realistic way. To put it bluntly, abstinence works, but it is not a cogent program. Monogamy, reducing partners and condoms are all effective and necessary to make prevention a comprehensive program. The politics comes from the forces that are saying it should be one thing or the other. But what may be appropriate for a 14-year-old is not for a 30-year-old. This is a virus spread by sex and drugs -- taboo subjects. So talking about HIV/AIDS is already caught up in enough shame and blame without turning it into a political debate.

And I hope to see much more progress in the science of prevention -- the development of microbicides and other technologies that will offer women an alternative to condoms. As with the cure, we must not stop until every avenue is explored.





 

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