Beyond Treatment

If someone told you that if Black America were a free-standing country it would rank 16th in HIV infection rates, would you be shocked? What if I told you that in some states, rates of new infections and prevalence among African Americans parallel those observed in sub-Saharan Africa? The AIDS Foundation reports that while African Americans are 36.8% of the city’s population, they represent 55.6% of Chicagoans with HIV. Currently, Chicago’s prevalence and new infection rate is more than double the nation’s, with African-American men, women, and youth representing a disproportionate percentage of those newly infected and living with the virus. What is keeping African Americans in Chicago on the global peripheries of the fight against HIV/AIDS?

Dr. Mildred Williamson is the HIV/AIDS section chief for the Illinois Department of Public Health. She has been working in HIV care and prevention, research, and policy since 1988 and is a lifelong Chicagoan. In our interview, she gives her perspective on why an African-American minority continues to carry the majority of the AIDS burden.

Could you give a brief history of the epidemic in the African-American community?

People may be familiar with the original article that the Center for Disease Control put out in the Morbidity and Mortality Weekly Report (MMWR), May of 1981. It was the first article that described cases of what was then AIDS-Defining Illness in men in California, all white and gay. That marked the beginning of the AIDS epidemic in the United States. There’s been subsequent research, analysis, and speculation that there were cases before 1981, but they were not recognized at the time.

There’s a group in New York, The Baron Edmond de Rothschild Chemical Dependency Institute, with Don Des Jarlais, whose research has mainly been around Injection Drug Users (IDUs) and HIV/AIDS. Historically, IDUs have been a marginalized and therefore underserved, under-recognized population. According to the groups findings, there were people among the IDU population that were dying as early as 1979 or earlier but because of who they were and where they stand in society, they went unrecognized.

There were also cases of infants who died from AIDS that were recognized later. The two main pediatricians involved were at first disbelieved by colleagues because by the time they came forward with their analyses, it had already become crystallized as a disease of white gay men.

Now, we know scientifically that it is rare that a viral infection will only strike at one portion of the human population, but nevertheless it got characterized that way by scientists, journalists, and all kinds of people.

Meanwhile, you have some other things going on. In the late 70s, early 80s, we were experiencing the de-industrialization of America, the decline of manufacturing in the U.S., which had a disproportional effect on people of color and urban dwellers, particularly in the Midwest and North East.

What’s that got to do with the AIDS epidemic in Black communities?

These were the industries that brought millions of Blacks from the South. These were industries in which Black people found their way into steady employment, and for some, movement into middle-class status.

With deindustrialization came the escalation of the drug trade. Not just heroin, but crack, cocaine, and other kinds of drugs. These drugs saturated the Black and Latino communities. [The] people dying from AIDS whose infections were through injection drug use and sharing of needles were people of color. A lot of people felt desperate enough to get involved in trafficking or to use drugs as self-medication for depression.

Lingering on top of this is the notion that this disease basically affects somebody else. So no particular attention was paid to the black community. As a result, we were late getting accurate information about HIV.

Additionally, we had a president at the time, Ronald Reagan, who did not even mention the word AIDS until 1987. The Ryan White Care Act, the basic lifeline for people who don’t otherwise qualify for Medicaid and Medicare did not come about until 1990.

You had economic, political, social circumstances, and historical factors around segregation, inequality in education, employment, and housing. All of these things factored in to create a perfect storm. So while early statistics showed AIDS predominantly affecting white men, it did not remain that way for long.

In the city of Chicago, the last year that Whites outnumbered Blacks or Latinos or any other group for HIV/AIDS cases was 1987. It’s been a majority African-American disease in Chicago since then. Nationally every year there has been an alarming increase in HIV/AIDS cases among African Americans compared to other groups. In the state, 51% of those living with HIV are African-American.

I would think that before we may have not been very good at tracking or paying attention to African-American populations, but now we have a lot of people who are aware. So why are the numbers still going up? What are some of the issues that continue to push African Americans to the margins?

The elephant in the room is the disparities and inequities. If we break down the African-American community, the two biggest groups that are affected by this epidemic are men who have sex with men, and women. 75% of the total epidemic in this state is men and of that 75%, a disproportionate number, are African-American. Same thing with the women, where an even higher proportion is African-American.

I think that this community has had to deal with an extraordinary number of issues at the same time. All of which have potentially devastating consequences. We’ve talked about education, employment, housing discrimination. You also have some things that have had an impact on all, but through the years have had special consequences for Blacks. You have individual, personal beliefs and traditions coming up against decades of unequal access to quality health care and information. African Americans are also reeling from lingering historical issues about what it means to be a man, what it means to be a woman. Issues around inclusiveness and homophobia have some special features in this community. For Black men there is a much shorter life expectancy, much higher probability of incarceration, unemployment, including at earlier ages. Even the structure of schools is not particularly welcoming and nurturing for Black boys.

Also, in our community there is a disproportional amount of families not headed by two parents. What does that mean when in certain circumstances, two-thirds or more are only raised by one parent? To me that also has an impact on a family’s and community’s stability.

We are in an age where there has been progress in terms of people with different sexual orientations. There was no such thing as gay/straight alliances 30 years ago in high schools, but there are now. I think those kinds of social formations that can be so affirming for people’s lives are not equally formed in our communities. The history of the black struggle for equality in this country has been predominantly around social and economic rights, which is absolutely understandable. The issue of all inclusive rights around women’s needs, people of various sexual orientations, who happen to be African-American, is a more recent phenomenon. I think there is some tension in terms of these traditional civil rights organizations, and in some of those there is homophobia. Then you have newer organizations, whose infrastructure is not as strong, and these groups need to be supported.

What can be done to change the trend?

In Chicago, organizations of, by, and for Black gay men are not that many. These groups need to be nurtured and befriended by the traditional civil rights organizations, befriended by the black church, and by these other major institutions in the community. These are some of the tools that are needed in order to make a dent.

Insofar as women are concerned, there are some things that affect Black women that are applicable to all women. There is a whole world of reproductive health services that has had a disconnect from the HIV world. Not as much as in the early years of the epidemic, but there is great need to put these two together. A stronger relationship between the HIV prevention services, medical, and research world with the reproductive health world will move the agenda forward in health and wellness of women, and for Black women in particular.

We need more people to be spokespersons. It’s got to be a combination of those living with and affected by the disease, and those who are knowledgeable, trained and work in this disease. We need more African-American professionals, including those who are HIV-positive or directly affected by HIV, to champion this issue. We need for young African Americans who are students, or in the beginnings of their careers, to consider going into this kind of work and service. ◊