Straight black voices missing in conversation about HIV

The theme of this year’s annual National Black HIV/AIDS Awareness Day (the 11th anniversary was Feb. 7) is “It takes a village to fight HIV/AIDS.”

You got that right.

Since the earliest days of the epidemic, people from all walks of life and HIV statuses have come together to tend to the sick, demand policy changes, fight for easier access to life-saving medicines, and educate the public about how HIV is transmitted.

But today, 30 years into an epidemic that has taken the lives of 12,492 people in the Commonwealth alone, the villagers are tired. The same populations most vulnerable to HIV infection in 1981 are those most vulnerable today: gay and bisexual men, black Americans, and injection drug users.

And Boston remains the second hardest-hit community in Massachusetts (after Provincetown), according to the latest data available from the state Department of Public Health. Factor in a widespread belief that HIV is an easily managed chronic condition coupled with sex education that ranges from negligent to non-existent, and you have the recipe for an unending epidemic that robs our families, our communities, and our health economies of energy and resources.

We have put in 25 years fighting the spread of HIV. We’ve seen some successes in Massachusetts; the most dramatic would be the near elimination of perinatal HIV transmission. But the most intractable characteristic of HIV today is that it is a black disease.

Last week the Centers for Disease Control (CDC) released data highlighting the racial disparities of HIV in America. In 2008, black men and women were diagnosed with HIV infection at eight and 19 times the rates seen in white men and women, respectively. The HIV diagnosis rates for black men and women were two and four times the rates for Latino men and women, respectively. Among adolescent and adult men, for the period 2005-2008, blacks accounted for 45 percent of all HIV diagnoses in U.S. men. Among women, blacks accounted for 66 percent of all the HIV diagnoses in U.S. women.

Clearly, something is missing from the public conversation and HIV policy decision-making process when a single group is so hard hit. And we think we know what that missing ingredient is: the black voice.

When it comes to changing policy, it’s the people who make the most noise, and their ability to be visible and articulate, who have the ear of decision makers. But perception plays almost an equally important role. In Massachusetts we have created a service delivery system, often looked upon as the national standard, comprised of services that are not only supposed to address HIV, but the root causes of HIV.

In the prevention arena, we’ve spent the past 30 years developing programs that focus on injection drug users, gay and bisexual men, women of color, and other groups of people who’ve been placed in the “high risk” category. Some of these interventions have been extremely successful—needle exchange for example—others have experienced marginal success. All have received a lot of attention from policymakers based on what research says works and doesn’t work, and where we should be investing our resources.

But curiously, there’s a group of people missing from the dialogue, and it’s a group that we’re growing more and more concerned about: heterosexually-identified men. In our opinion, we just don’t know, and have never really known, what to do with sexually active men who don’t identify as gay or bi, especially those who are black. We have not created enough spaces for straight black men to come together to talk about their sexuality and we certainly don’t have a whole contingency of people advocating for black men on Beacon Hill.

So where do we go from here? The onus for making a change in the community lies in the hands and soul of that community. If it truly does take a village to end HIV, let’s help make that happen.

Monique Tula is the vice president of the HIV Health and Policy Institute at the AIDS Action Committee. Larry Day is Manager of HIV Health Promotion at AIDS Action Committee.