The LGBT community united to demand action and address the reality that although HIV did not discriminate, the power structures that could help save lives sure did.
Today, however, HIV does appear to discriminate. More than six in 10 new infections in the United States are among men who have sex with men, known in this field as MSM. Within that group, the hardest-hit are African American men ages 13 to 29. From 2006 to 2009,CDC data show, HIV infections rose by an appalling 48 percent among these young men — one of the largest increases of any demographic. New HIV cases among black MSM are nearly equal to those for their white counterparts, despite the former’s far smaller percentage of the population.
This alarming disparity is one that the 19th International AIDS Conference, which begins Sunday in Washington, will address.
Even while this crisis has grown, help in combatting it has been shrinking. HIV no longer seems to be a priority for some in the gay community. Foundations focused on lesbian, gay, bisexual and transgender people, which have historically provided millions of dollars in crucial funding for HIV service organizations, are shifting their resources elsewhere. The fight is different now. There is a lack of urgency among some well-off, white gay men, a segment of the LGBT community that was crucial in battling HIV and turning the tide in the 1980s and ’90s.
I have worked in health and HIV services since virtually the start of the epidemic, and I know how hard it is to raise money to support desperately needed services. But in the past few years, it has become more difficult than ever, even as infection rates, particularly among gay and bisexual men of color, have spiked.
According to Funders Concerned About AIDS, a nonprofit that tracks all AIDS and HIV philanthropy, funding for the cause from U.S.-based philanthropies totaled $459 million in 2010, down more than $30 millionfrom 2009. The number of organizations giving $300,000 or more was down 30 percent in 2010 over the past three years, as longtime HIV/AIDS funders focused on different areas.
The Arcus Foundation once gave millions to HIV organizations as part of its mission to advance LGBT equality. In 2010, the group published a report that made a powerful case for funding to fight the spread of the disease in LGBT populations around the world. But today, according to its Web site, the only domestic HIV grant Arcus still makes is to Gay Men’s Health Crisis.
Other funders have changed their approach to battling HIV, attempting to address larger challenges to the health and well-being of LGBT people, such as poverty and access to health care. However, the result for those delivering vital HIV services is the same: fewer grants, fewer dollars.
The Gill Foundation, for instance, has given approximately $118 million in grants over its 17-year history to aid its mission of furthering LGBT equality. This includes more than $6 million between 1999 and 2007 for fighting HIV across the United States. Since 2007, however, the group’s grants for HIV services have been limited to organizations in Colorado, where it is based. Foundation officials emphasize that Gill is still funding national organizations that work to improve the health and services environment for gay people, including those with and at risk for HIV. But that is much different than directly funding those services.
Why is this happening? Overwhelmingly, these foundations’ giving is decided by rich, white gay men. And these funders are among the Americans who have access to high-quality health care. If they need them, they have access to life-extending antiretroviral drugs, which have made HIV a manageable chronic illness for many.
Gay donors are still giving generously to causes they believe in. While we have seen millions of dollars well spent on issues such as marriage equality and repealing “don’t ask, don’t tell,” somehow AIDS has fallen off, or at least moved well down, the list of priorities.
From the beginning of the epidemic, progress has always come when the community has banded together. We disseminated information about HIV through gay newspapers such as the Washington Blade. We created community health organizations; here in D.C., the Whitman-Walker Clinic was a crucial early center for treatment, testing and prevention of the disease (and remains important today). And we raised our voices, forming groups such as Act Up that proclaimed the truth — that silence about AIDS would mean our deaths.
Many of today’s successes, including antiretroviral drugs, flow from that generation of activists. We are now working on many other important causes, but it was the fight against HIV, and governmental complacency and indifference to it, that ignited our activism. Because we won our battles, life-saving medications became available to more people — at prices most could afford (provided they had insurance) or via vital government initiatives such as the AIDS Drug Assistance Program (ADAP). We forced the government to pay attention to us, and we forged alliances that seemed unbreakable.
Somewhere along the way, though, HIV and AIDS seem to have fallen by the wayside among our community’s most prominent funders. The disease is far from a nonissue even for those who are financially well-off and have easy access to antiretroviral medications. But while these drugs are not trouble-free, HIV is no longer the death sentence it once seemed — for them, at least. A healthy HIV-positive man is simply a much more visible figure (and not evidently in need of a host of services) than poorer HIV-positive and at-risk Americans who lack ready access to treatment. And a disproportionate number of those people are black and gay or bisexual.
Black MSM live at the intersection of multiple inequalities: racism, homophobia, economic disparities, high incarceration rates and limited access to quality health care. In the District, 6.3 percent of black men are HIV-positive, a rate that exceeds that in many sub-Saharan nations.
Not only are black men far less likely to have health insurance, they often lack access to the institutions that provide HIV treatment. Many LGBT-specific institutions are based in predominantly white neighborhoods and are entrenched in a gay culture to which some black men may not readily relate. In more conservative communities outside major cities, particularly in the South, homophobia is a major problem at organizations that provide care.
And the programs that support lower-income Americans with HIV are in peril. According to an analysis by the Kaiser Family Foundation, in fiscal year 2012, federal funding to combat HIV and AIDS was more than $21 billion. But some of those resources could be at risk. Congress is divided and dysfunctional, and headed for a showdown on the budget that could result in dramatic cuts to virtually every important source of funding to treat and combat HIV, including the Ryan White Care Act and ADAP, without which thousands will lose access to HIV drugs and care. And all health and human services programs will be vulnerable as well.
“Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches,” Russo, the HIV-positive activist, once said. Because of the extraordinary efforts of so many, that war is not as deadly as it once was. Many have moved out of the trenches. But we cannot overlook HIV as a priority for our community while it is still a crisis for so many of us. As at the start of the epidemic, we are at our strongest when we are united in this fight.
Daniel Tietz is executive director of the AIDS Community Research Initiative of America.
Read more from Outlook:
Should doctors keep patients’ HIV status a secret?
A smarter way to fight AIDS in Africa
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