It wasn't always this way. In the 1980s and the 1990s, when HIV hit its peak, the gay community was at the forefront of the fight against the silent killer. A group called ACT UP formed in New York with the motto "silence=death," and went on to hold highly publicized demonstrations, one of which successfully helped lower the price of a new AIDS drug. The group fought hard against the social stigma of HIV and demanded support, as well as new research and treatments.
"LGBT groups are great activists. We showed that at the beginning of the AIDS epidemic when the epidemic wasn't being taken seriously," says Chris Collins, head of public policy for the Foundation for AIDS Research, known as amfAR, a major global HIV/AIDS nonprofit. "We absolutely need LGBT groups to become more engaged again in the effort to fight AIDS in the United States."
In recent years, efforts to fight AIDS have moved abroad, while activism in the gay community at home has gone largely toward gay marriage.
According to a recent report from the Funders Concerned About Aids, the top funders fighting HIV – those who gave $300,000 or higher – fell by nearly 30 percent since 2005. That same year, a number of states took first steps toward affirming gay marriage.
"LGBT groups have simply been AWOL on HIV," says Mark Harrington, a gay activist who heads the Treatment Action Group. "They don't lobby in D.C. for funding. They don't take policy positions. And they don't advocate for more funding or research."
That's not entirely true: Cole-Schwartz says HRC is currently lobbying for the Early Treatment for HIV Act, which would allow states to provide Medicaid coverage for low-income people with HIV, and previously lobbied for the Ryan White Care Act, the largest federal program for people with HIV/AIDS.
But most lobbying is done by HRC partners, Cole-Schwartz says.
And Collins thinks that with a public health issue this pressing for the gay community, that level of involvement doesn't make sense.
"LGBT leadership has a critical role: it needs to do more to let gays and lesbians know how important it is to take care of their own health. To let them know the science, and the treatment," he says. "We've siloed out our efforts, and the big groups don't think they need to do anything because they think 'the HIV/AIDS group will do that.'"
Collins says it's not about 'Gay Inc.' spending more money on HIV, but about them integrating it into what they're already doing, such as talking about HIV when they talk about other problems for gay youth.
"We all have to come to grips about how interrelated this all is," he says.
According to the CDC, if HIV continues to spread at its current rates, more than half of college-aged gay men will have HIV by the age of 50.
There are small indications 'Gay Inc.' may get more involved in the HIV fight going forward. Mermin at the CDC says that when the new HIV incidence data came out, CDC held a teleconference with the big LGBT groups to discuss the problem. "Many organizations said they hadn't prioritized this over the last decade, and they said they were re-inspired," he says.
Last year, HRC also created – for the first time – a position for a director of a new health and aging program.
And Collins and Staley say they have plans to meet with the largest LGBT groups to talk about how to better integrate HIV work.
But Staley worries that the lack of attention to HIV may be generational.
"Gay marriage is the feel-good story for our age. It's a noble cause. It's about love," he says.
"We were so burnt about HIV/AIDS. The younger generation views that as something the older generation went through. And they are very resistant to having it define them."