Demanding Better—But for Whom?
US PLHIV Caucus’ Federal Policy Agenda Excludes Long-Term Survivors
by Hank Trout

Early in June of this year, the US PLHIV Caucus issued a document called Demanding Better: An HIV Federal Policy Agenda by People Living with HIV. When word of the document showed up in my email inbox, I quickly downloaded the document and read through it. I expected (hoped) to find in the document new strategies for improving the quality of life for myself, all of my friends, and the community at large. I had reason to be hopeful.

After all, the US PLHIV Caucus is a well-known, well-respected consortium of organizations, coalitions, networks, and client groups of people living with HIV, and independent advocates living with HIV, including the International Community of Women with HIV/AIDS–North America, the Positive Women’s Network–USA, the SERO Project, and the Global Network of People Living with AIDS–North America. The HIV Caucus prides itself on collectively speaking with a unified voice for people living with HIV in the U.S. There is no doubt that they have done valuable work for the HIV community.

And there is indeed a number of proposals in Demanding Better that should be implemented pronto. I wholeheartedly applaud the Caucus’ focus on healthcare equity for African Americans, Indigenous Americans, and other people of color, their work to address gender disparities in care, and their efforts to engage HIV-positive people in policy decision-making and reducing stigma attached to HIV/AIDS. Lofty, worthy, achievable goals, all of them.

However, I was extremely disappointed and, frankly, angered that Demanding Better fails to address issues specific to long-term survivors of HIV/AIDS. I scoured the fifty pages of the document, hoping to find some reference, even brief, to us long-term survivors and the unique needs we live with. To no avail. The agenda does indeed address “people living with HIV”—but surely the folx at the Caucus must realize that the economic, emotional, physical and mental healthcare needs of a sixty-eight-year-old man who has been HIV-positive for three decades or more are quite different from the needs of, say, a twenty-two-year-old who has just recently seroconverted. And the people in the Caucus must also certainly be aware that more than 50% of the people living with HIV in the U.S. are over the age of fifty (here in San Francisco it’s more than 65%). That fact alone makes our absence from the Demanding Better policy statement so egregious and hurtful.

I expected better—although I’m not sure why I expected better. This absence is nothing new to us long-term survivors. We are routinely excluded from (or barely mentioned at) national and international AIDS conferences, and we are nowhere to be found in the federal Ending the HIV Epidemic initiative. We long-term survivors are not only the majority of people living with HIV, we are the forgotten majority. Those of us who were the first on the frontlines of the fight against HIV/AIDS, who suffered unspeakable losses and grief, who have carried on this fight for forty years, who are still living with PTSD from all of that—those of us who deal every day with stigma, loneliness, isolation, innumerable comorbidities, untreated mental health difficulties, lack of mobility—those of us who, because HIV has crippled our immune systems, face a higher probability of heart attacks, osteoporosis, various cancers, lipodystrophy, and neuropathy—we are ignored even by agencies and organizations within the HIV community. Like, sadly, the US PLHIV Caucus.

That is unconscionable.

How did this happen? How did an organization that purports to “speak with a unified voice for people living with HIV in the U.S.” manage to exclude us long-term survivors—more than half of the 1.2 million PLHIV in the U.S.—from their proposal? I know that several members of the Caucus are renowned activists and long-term survivors themselves—did they not speak up during Caucus deliberations that led to Demanding Better? Did none of them think to ask, “Hey, what about us?”

On September 18, we will mark National HIV/AIDS and Aging Awareness Day, highlighting the complex issues related to HIV prevention, care and treatment for aging populations in the United States. NHAAD was launched by The AIDS Institute in an effort to raise awareness due to the alarming increase in the number of older adults becoming infected with HIV as well as those older adults over fifty aging with HIV.

Let’s use NHAAD to demand better for ourselves. And let’s hope the US PLHIV Caucus pays attention.

Since I wrote this, the activists who created The San Francisco Principles 2020 have corresponded with Ron Johnson of the US PLHIV Caucus about integrating our concerns into Demanding Better. 

Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-one-year resident of San Francisco, where he lives with his husband Rick.