The Politics of HIV

Prevention and politics

by Keith R. Green

Motivated more by the idea of being in regular contact with women than the actual work that he was applying for, Eagle took a job as a clerk inside the hospital at the Henry Hill Correctional Center in Galesburg, Illinois. It was there that he received a crash course on the havoc that HIV is wreaking on the lives of people just like him and the politics that allow it to happen.

“I saw so many people die,” says Eagle of the years he spent caring for fellow inmates suffering from the end stage effects of AIDS. “These were people who had been on the streets just like I had, doing the same things I had done. It really opened my eyes to the truth about this disease—which is that everybody is at risk and, more importantly, nobody gives a damn.”

Having become the last friend to many dying men, Eagle made a lot of promises to a lot of people that he was determined to make good on upon his release. One such promise was to go back to the streets and let people know about the severity of the impact of HIV. Another was a promise that he made to his aunt to attend her church whenever he was, once again, a free man.

It was during his attempt to fulfill that second promise that Eagle was introduced to Clifford Armstead, executive director of Working for Togetherness (WFT, an HIV/AIDS service organization serving both the South and West sides of Chicago). Though he was initially told that the agency wasn’t hiring, Eagle’s persistence and determination landed him the position of Prevention Specialist at WFT, just a month shy of his release from the penal system.

But getting the position was the first of many obstacles that Eagle would face on his journey to fulfill his promises. The next, and arguably the greatest, would be navigating the politics of the system that funds, or under-funds as some would say, the programs and tools that he needs to fulfill them.

“The same things that I experienced in the joint around trying to make people aware about this issue are the same things that I am seeing out here on the streets,” Eagle says of the challenges he faces in his work.

“The people that are in positions to do something about it simply do not, because they simply don’t understand. They are looking at it only from the perspective of a bunch of numbers that come across their desk and the burden that it has on their pockets. But they don’t have a clue about what’s going on out here. If they knew, or if they cared to know for that matter, money would never be an issue.”

Julie Davids, Executive Director of the New York City-based CHAMP (Community HIV/AIDS Mobilizations Project) Network, couldn’t agree more. CHAMP is committed to identifying the barriers that exist to successful HIV prevention and then mobilizing the community around an effective strategy to create change—a mission that, in so many ways, is rooted in politics.

“There are three key things that we have to consider when we speak in terms of HIV prevention in the U.S.,” says Davids. “We have to look at what our political leaders at the national level think about both prevention and HIV itself. Then we have to look at healthcare in general, because we realize that many people only access prevention services through the healthcare system. And then we have to look at what’s going on in terms of research. And if we honestly take all of those things into consideration, we will see that there is not a whole lot going on in terms of HIV prevention in our country right now.”

Davids goes on to suggest that our federal government’s attitude towards HIV itself sets the tone for everything that we do in regards to prevention. “The current administration looks at HIV in terms of morality. They want us to focus specifically on abstinence-based prevention programs when, quite frankly, we have no proof that these types of interventions actually work. And they won’t provide funding for research to be conducted on more comprehensive interventions because anything other than abstinence, when it comes to prevention, is considered immoral and ‘we can’t fund anything that promotes immorality,’ can we?”

“Yet and still,” she continues, “we have such extensive monitoring mechanisms in place to attempt to track the effectiveness of federally funded, non-abstinence based prevention programs, that it makes achieving results virtually impossible.”

Davids is speaking specifically of the recently introduced PEMS (Program Evaluation and Monitoring System), which has completely changed the way that organizations funded for HIV prevention through the Centers for Disease Control (CDC) do business. “PEMS will require prevention specialists to ask more in-depth, invasive questions about their clients’ risk behaviors and then report back to the CDC on their findings.”

“There are several problems with this,” she says with concern. “First of all, these agencies aren’t receiving any extra money to perform any of the extra duties that they are being assigned. In fact, they are receiving less. And, secondly, this system is designed to determine the effectiveness of the prevention programs that we are currently using (which, she notes, are programs that the CDC mandates that their grantees utilize). This type of tool draws a fine line between evaluation and research.”

And while Davids and others with interest in HIV prevention agree that research is necessary to determine whether or not we are headed in the right direction, they also feel that it is equally important to have trained research professionals conducting the research. “Trying to get data that we can rely on about these programs is not going to happen using a research tool dressed up as an ‘evaluation and monitoring’ system,” says Davids. “And let’s not even begin to talk about ethics. There are no safety mechanisms in place to guarantee the confidentiality of the answers that clients will give us. They are not asked to give their consent to participate in a research project and we really have no idea what the CDC is going to use this information for.”

The thing that Davids fears most is that the findings could be used to criminalize people with HIV, which would further perpetuate the stigma associated with the disease. It is her belief that the ideology behind PEMS is merely a reflection of our government’s views about people who are living with and who are most at-risk for HIV—people within minority communities. And there are others who would agree.

“Whether we speak in terms of race, sexual orientation, gender or economic status, minority populations across the board are those with the most at stake here,” says Illinois State Representative Connie Howard, who was largely responsible for the newly implemented African American HIV/AIDS Response Act in her state (see News Briefs, Nov/Dec, 2005). “But we don’t seem to be willing, as a community, to do what we need to do to get what we need,” she continues. “We don’t have enough people on the battlefield willing to fight for our issues. But I wear ‘em down!”

Currently hard at work to secure appropriations for the Response Act, Howard has no problem speaking candidly about how politics at the local level make progress in HIV prevention a challenge. “It’s not a party line issue much of the time, although I have much more support from people on my side of the aisle [Democrats] than from the other,” she says. “It’s all about compromise. Everyone has issues that are important to them. So we have to be willing to compromise. ‘You do this for me and I’ll do that for you.’ ”

Chris Brown, Assistant Commissioner of the STD/HIV/AIDS Division at the Chicago Department of Public Health, understands this type of compromise all too well. “There are so many different concerns with so few resources available to address them,” says Brown. “What ends up happening is that we begin pitting ourselves against one another. We have national versus international, national versus local, care versus prevention, abstinence versus condoms, gay versus straight, Black versus White and so on. It becomes political just deciding upon how to appropriately distribute resources.”

To remove some of that pressure from the shoulders of Brown and his staff, his division seeks the advice of community advocates and activists who represent the populations most at-risk for HIV. With membership determined by both experience and demographics, the Chicago HIV Prevention Planning Group (HPPG—of which I am a currently elected member) and other committees around the country of its kind, utilize the data collected by epidemiologists to make recommendations to the Department of Health about where government prevention dollars should be spent.

“Transparency [making your actions clear] is key,” says Reginald Jackson, community co-chair of HPPG and a member of the TPAN Board of Directors. “We come to the table with all kinds of deeply-rooted trust issues. But when people understand the process from the inside out, they are better equipped to work towards a plan that everybody can be happy with.”

Yaa Simpson, who works as an epidemiologist for the Chicago Department of Public Health, has no doubt that monies allocated for HIV prevention are following the trends of the epidemic. Her concern, however, is the lack of money currently available to fight it.

“The late Dr. Bobby Wright (an African American psychologist who founded the first mental health center in Chicago for African Americans) said that ‘behavior is changed with consistent application over time,’ ” says Simpson. “What does that say to us? That says that we need to continually invest time in helping people to achieve the behavior changes necessary to decrease the number of new infections that we see year after year. It’s a process and it takes adequate funding to support it. Anything less is despicable. Flat funding is despicable!”

Simpson also stresses the importance of community involvement from advocates such as Eddie Eagle and the members of HPPG, as well as from “celebrity” figures whose voices and economic status have influence. “This is America! In this county, money talks and the people that have money have the loudest voice. Achieving effective prevention is about money first, and then policy. You have got to have money wherever your mouth is if you are going to make a difference.”