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Reclaiming HIV as a 'gay' disease
VIEWPOINT by John-Manuel Andriote
2012-12-05

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Even in the first decade of the now three-decade-long HIV/AIDS plague, there was already talk about "the changing face" of the epidemic. We were told that face was getting darker as more people of color were affected, and more feminine as women also were being diagnosed in greater numbers. This generalization is still made today, and even makes headlines.

While it's true that the proportion of minorities with HIV has risen over the years, the fact is that, since AIDS was first reported among a group of gay men in 1981, gay and bisexual men of all colors continue to account for by far the largest number of those infected with HIV, those at risk for infection, and those living with untreated HIV. Like it or not, HIV/AIDS in the United States is still a profoundly "gay" disease.

But you wouldn't know it if you looked at the agendas and priorities of the nation's top LGBT political groups. Beginning in the late 1980s, they effectively handed off HIV/AIDS to organizations that focus exclusively on this issue. The problem with this strategy is that, without advocacy from our most influential organizations—advocacy focused specifically on the needs of gay and bisexual men—the issues affecting those most in need are pushed to the margins of the LGBT legislative and political agenda.

The Obama administration's "2010 National HIV/AIDS Strategy," the nation's first attempt in three decades to develop a cohesive strategy to address the epidemic, calls for a much more targeted focus on gay/bi men—and much more involvement by our community organizations in advocating for us. Like millions of other unemployed, underemployed, and uninsured Americans caught in the grips of the Great Recession, these men—and I count myself among them—rely on public programs such as Medicaid and the federal Ryan White Program, which provides assistance with insurance premiums, medications, and support services aimed at keeping them connected to the medical care they need to stay well and reduce the risk of infecting others. They tend not to have the disposable income needed to have clout with the national LGBT political organizations.

With their attention and resources aimed instead at marriage equality—a priority for their educated, affluent (mostly white) supporters—it's not clear whether these groups will rise again to the challenge of HIV/AIDS in gay America as they once did so brilliantly in the early, terrifying years. A movement about marriage and family may seem to be an easier sell to the American public, but at what cost?

The national movement bows out

The world has changed since Ginny Apuzzo demanded $100 million for AIDS at a Congressional hearing on Aug. 1, 1983. Two years after the first reported cases, total federal spending for the deadly new disease was only $14.5 million. In 2012, the U.S. government spent a total of $27.7 billion to combat HIV.

Washington lobbying was a new experience for gay advocates in the early '80s. Apuzzo, who became director of the National Gay Task Force in 1982 (the "L word" was added later to make it the NGLTF), told me: "What you have to understand is that the gay and lesbian community in 1980 to '81 had only one experience with lobbying—that was how to get the gay rights bill through. Every session you'd go in and add two or three sponsors, get people to write from home. That's where this community's experience was, and it had to turn around on a dime."

Millions of dollars were raised for AIDS in the '80s, expanding the budgets, staffs and visibility of AIDS-focused organizations as well as the national gay and lesbian political groups, particularly the Human Rights Campaign (HRC) and the NGLTF. John D'Emilio, a noted historian of the LGBT movement and history professor at the University of Illinois, told me: "AIDS built the gay movement. It shook loose the resources to transform a movement that was small and based almost entirely on volunteer labor into a movement of full-time people who were devoting themselves to this work and getting paid for it."

But if HRC and NGLTF began to look away from HIV/AIDS issues in the late '80s, this trend accelerated once the HIV-fighting drugs hit the market beginning in 1996. The highly active antiretroviral therapy (HAART) made it possible to talk about living with HIV rather than dying from AIDS. Perhaps this shift in priorities was understandable, but it raised the question whether these organizations were serious in their claim that they represented the entire LGBT community.

John D'Emilio, who was the first director of NGLTF's Policy Institute in the mid-'90s, admitted that over the past decade, "AIDS has dropped off the face of the gay map. It's not that national and state organizations do nothing about it, but it's not a priority. It gets a lot less attention than 'Don't Ask, Don't Tell' and ENDA [the Employment Non-Discrimination Act], and, in the last few years, marriage."

Commenting on the rise of marriage equality as the paramount issue on the agenda, D'Emilio added, "The lack of access to marriage is not exactly a crisis. But think of the mobilization and energy that has gone into that in the last five to ten years as opposed to an issue in which thousands of people are dying each year. AIDS is much more of a crisis than marriage. Marriage appeals to people who have social and economic status. AIDS hits more strongly people who don't have economic status."

I asked HRC's chief counsel, Brian Moulton, to respond to critics who say that the HRC isn't advocating strongly enough for the HIV community. He pointed to the group's ongoing monitoring of the federal appropriations process, "advocating for appropriate funding and opposing restrictions on syringe exchange and other ideologically driven policy decisions."

He said HRC also is working with various organizations to support a new anti-criminalization bill, to remove the organ transplant ban between HIV-positive individuals, and to push the Food and Drug Administration to adopt a blood-donation policy that doesn't categorically exclude gay/bi men. Moulton also shared an issue brief HRC published this year—the only thing on its website specifically mentioning gay/bi men.

To put Moulton's comments in perspective, he mentioned nothing about advocating for a proportionate share of federal HIV prevention dollars, or about efforts to repeal the pernicious 1987 "Helms Amendment"—named for the late, rabidly anti-gay North Carolina Senator Jesse Helms—that continues to restrict federal support for the kind of targeted, explicit prevention messages public health experts have called for since 1986.

As for the NGLTF, as of July 2012, three slender paragraphs about HIV/AIDS on their website were still quoting the group's statement for World AIDS Day 2009. (To be sure, HIV/AIDS wasn't the only issue featuring outdated information on their website.) NGLTF's communications director Inge Sarda-Sorensen said in an e-mail that the Task Force (as it now prefers to be called) is working to implement the Affordable Care Act; to get the federal government to eliminate its policy of no condoms in prison; to advocate for increased data collection efforts to understand the spread of HIV in the transgender and people of color communities; and to continue to address HIV/AIDS in its annual "Creating Change" training conference in "an array of workshops, sessions and keynotes."

However, of the hundreds of workshops offered at the Jan. 21-29, 2012, conference in Baltimore, a grand total of only three workshops focused on HIV/AIDS—which can hardly be called an "array." In fact, the three workshops—"HIV and Aging: Why HIV and Aging Policy Matters (or Should Matter) to the LGBT Community," "Meeting the HIV Prevention Needs of Young Black MSM [men who have sex with men] in Baltimore City: A Reflection" and "Best Practices for Engaging MSM Communities during Black Gay Pride Events"—barely scratch the surface. That Creating Change is considered the premier boot camp for future activists bodes ill for HIV/AIDS advocacy on behalf of gay/bisexual men—and for LGBT people in general. By not drawing deeply from the "heroic legacy" of gay America's victories and defeats in the AIDS epidemic, activists who aren't well grounded in the community's very recent past lack the depth needed to anchor their efforts to create a just and equal future.

Still a gay disease

In communities across the United States, organizations created to serve middle-class gay men with AIDS now struggle to raise funds to serve the lower-income gay/bi men, particularly African-American and Latino men, who today rely on their services. Their traditional donors—middle-class and affluent white gay men—have "moved on" since they can now get their HIV-related medical care from their private physicians.

Rick Siclari, director of Care Resource, the largest HIV service provider in South Florida, told me in a 2010 interview it's "a whole new world" for middle-class white gay men—even in his city of Miami, with the highest rate of AIDS cases in the country. "White gay men are not giving as much today," he said. Now the agency is hoping its new clients, many of them black and Latino, will participate in fundraising by giving them the chance to make smaller donations in the five to ten dollar range.

The old ACT UP slogan of "Silence = Death" still holds, if by "silence" we mean withholding of support. This failure of the gay community to help those in need is based on and justified by the (false) belief that HIV is no longer primarily a "gay" problem—simply because of the experience of a non-representative segment of the gay/bisexual male population. And yet, consider the following statistics:

—In Miami-Dade County, white gay and bisexual men accounted for only seventeen percent of the 32,710 AIDS cases reported between 1981 and July 2010, and only 25 percent of the cases just among gay and bisexual men there. Hispanics and black men are almost exactly equal, each at around 41 percent of the city and county's AIDS cases. All these men together account for 74 percent of the city's MSM—comprising 54 percent Hispanics and 20 percent African-Americans.

—Gay men are 60 times more likely than heterosexual men, and 54 times more likely than all women, to be diagnosed with HIV. Gay men account for 48 percent of the more than one million people living with HIV in the United States—an estimated 532,000 men (according to the Centers for Disease Control and Prevention, or CDC).

—MSM, including those who inject drugs, constituted 58 percent (24,977) of the estimated 42,959 Americans (31,872 of them males) newly diagnosed in 2009 with HIV infection.

—In 21 major U.S. cities, one in five gay men is HIV-positive. Of 8,153 gay and bisexual men tested in the cities, 1,562 were positive. In Baltimore, 38 percent were positive; 29 percent in New York City; 26 percent each in Dallas and Houston; 23 percent in both Miami and San Francisco; and 21 percent in New Orleans.

—Nearly half of all infected gay/bi men don't know they are HIV-positive. More than two-thirds of infected black men, and nearly eighty percent of HIV-positive young men aged eighteen to 24, are unaware they have the virus.

—As of 2008, AIDS had killed an estimated 617,025 Americans—48 percent (296,222) of them gay and bisexual men, most in the prime of life.

The CDC reported a strong link between men's socioeconomic status and HIV. The lower a man's income, the higher his risk for HIV. The higher his education and income, the more likely he was to know his HIV status. There was no surprise in this confirmation that low income correlates to lack of insurance and late diagnosis of HIV-positive status.

What is to be done?

So, what does HIV, as a "gay" disease in the United States, look like today? It looks a lot like other chronic, potentially fatal illnesses affecting people who need specialized medical care and costly treatments to keep them well. As with type 2 diabetes, high blood pressure or treatable cancer, access to medical care and treatment is the key difference between living well with HIV or dying from AIDS.

The Obama administration's signature health-care reform—the Affordable Care Act (ACA), which was upheld by the Supreme Court on June 28, 2012—has tremendous implications for people living with HIV/AIDS, particularly the law's requirement (starting in 2014) that insurance companies can no longer deny coverage to the estimated 112 million Americans who have a pre-existing condition, including the estimated 1.1 million who are living with HIV.

Since the court's 5-4 ruling to uphold the law, the advocates are breathing a bit easier. However, according to Ronald Johnson, vice president for policy and advocacy with AIDS United, "it will be a brief sigh of relief. Now that we have the base of the ACA, and health care reform is in place, we have a huge agenda to make it work."

Carl Schmid, deputy director of the AIDS Institute, observed that HIV advocates are now concerned about the implementation of the ACA, the expansion of Medicaid, and the need for the federal government to provide tools to the states and to service providers that rely on federal Ryan White Program funding. Schmid is concerned about what a Mitt Romney presidency would mean for the progress that has been achieved under President Obama. "The choices are really clear," he said. "The Republicans are on record that they want to repeal this [ACA], and Romney as well. The Democrats and Obama are very clear they want to maintain the reform."

As for HIV/AIDS and the LGBT equality movement, Schmid argued that the lack of visible involvement from the HRC and the Task Force has consequences beyond merely fueling the perception that HIV/AIDS isn't a priority for them. It contributes to the dearth of public awareness about how hard-hit the gay male community continues to be.

Increasing that awareness, publicizing the fact that gay and bisexual men of all colors continue to bear the disproportionate burden of HIV/AIDS in the U.S., isn't going to come about through three workshops at the Task Force's "Creating Change" conference. It's not likely that HRC's issue brief will reach many members of the gay public, let alone the general public. What's needed is for every LGBT organization in America to reclaim HIV/AIDS as a distinctly "gay" problem, one that affects the lives of hundreds of thousands of gay and bisexual men nationwide.

Johnson sees responsibility for this project on both sides—the full-time HIV advocates and the national LGBT organizations: "Those of us in the HIV community, particularly those of us who straddle the communities, need to push and engage our brothers and sisters who are in the LGBT movement to get re-engaged. Those of us, gay men and lesbians of color, need to take on this challenge because gay and bisexual men continue to be the most impacted community in the United States. HIV is still a critical public health and individual health issue for the LGBT community."

John-Manuel Andriote is the author of Victory Deferred: How AIDS Changed Gay Life in America (1999 and 2011 editions). This article originally appeared in the Gay & Lesbian Review Worldwide (September-October 2012).


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