History and Hope

Hope dies last. And, drugs are hope for people with AIDS.

That is what Joel Martinez (who founded The Center for AIDS) taught me. I remember having lunch with Joel in his law office in 1983, twelve years before he founded the Center for AIDS. I had no idea what he was talking about when he told me he had Gay-Related Immune Disease (GRID), the "new gay men's disease." Twenty-three years later I can tell you that although I understand HIV/AIDS in my head, my heart still translates that information into ferocious anger. We wore that anger like clothing throughout the first decade of the disease.

We worked hard to give comfort, but people with AIDS died anyway. It took outspoken, upper-class, gay white men in food stamp lines and at clinics for the indigent to draw attention to the enormous holes in our medical and social service systems. Agencies like AIDS Foundation Houston raised 80% of its budget from passing around a hat at local gay bars. Little blue-haired ladies from local churches and synagogues formed Care Teams. They carried bars of soap in their purses when they went to local hospitals to change sheets and feed patients with AIDS. No one knew how the disease was transmitted, so hospital staffs were afraid of "those" patients.

Politically, we wore t-shirts that said, "Louie, Don't Shoot!" in response to a Mayoral nominee who told the media that his solution to the AIDS problem would be to "shoot the queers." He thought the microphone was turned off. People chained themselves to the doors of drug companies, the Centers for Disease Control (CDC), and other government buildings in an effort to draw attention to the disease. Gay men wore bizarre-looking wigs in an effort to hide their identity and protect their jobs while picketing the Social Security Office. They were desperately trying to draw attention to the fact that people were dying before their disability claims could be processed.

The demonization and marginalization of people with AIDS only made prevention and treatment more difficult. A brave young hemophiliac named Ryan White stepped forward, allowing politicians and others to feel safer embracing a cause populated by these "innocent victims." Elizabeth Taylor, Princess Diana, and Carolyn Farb showed their moxie and helped others see AIDS as the terrible disease that it is.

In those early days, we formed extraordinary friendships and worked long hours. The first AIDS hospital in the country opened in Houston and closed just 12 months later. Fortunately, Houston grassroots efforts created other firsts that lasted longer: McAdory House (the first of several residential facilities), The Assistance Fund (which provides money for insurance premiums), FIRM (the largest religious response to HIV/AIDS in the country, which provides Care Team support and education), the Pet Patrol (which provides pet care so that people with HIV/AIDS can keep their companions), and more. We surprised ourselves at how creative we could be when we had so little with which to work.

We volunteered, and through volunteering we learned to change adult diapers, transfer a person from a bed into a wheelchair, and sit with a stranger through the night. We also learned to recognize burnout.

On a lighter note, as a Pet Patrol volunteer, I remember learning that an 8-year relationship with a cat is, for many gay men, their longest, most successful relationship. And yet, we kept taking the emotional risk of loving one more person. Joel met a wonderful man, fell in love, and surprised himself when he wanted to marry him. People who were extraordinarily sick sought to heal relationships with old friends, parents, and siblings. And, volunteers kept agreeing to open their hearts "one more time" to help a stranger.

The second decade of HIV/AIDS brought drugs, and hope. Although people still die of AIDS and related conditions, it is now unusual to lose a friend 6 months after diagnosis. The Ryan White CARE Act was created in 1990. Since then, millions of dollars have been made available on an annual basis to local communities so that they can provide "professional" care to people living with HIV/AIDS.

Sadly, the disease has moved into the heterosexual community and minority populations are disproportionately affected. But, because of medication, perinatal transmission has been all but eliminated, at least here in the United States.

In the mid 1990s, resources were more plentiful and sufficient to fund medical care, medication, food pantries, transportation, and other services specifically for people with HIV/AIDS. But with recent cutbacks in government funding and greater competition for private dollars, HIV-planning bodies have difficult choices to make. If they allocate funds for "support" services, there will be fewer dollars for medical care at a time when newly infected people continuously enter the care system and all people with HIV/AIDS in the US are generally living longer. The federal government and local planning bodies have begun to require that people with HIV/AIDS turn to more "mainstream" charitable sources for food, transportation, and emergency housing. Federal funding is complex, and there are no simple answers. But, in the fight against AIDS, drugs have provided hope. This is why it is so important to make drugs available to those who need them in the United States and throughout the world. We cannot let hope die -- no one wants to go back to the early years of the epidemic.

Tori Williams is Manager of the Office of Support for the Ryan White Planning Council in Houston/Harris County. She is also the 2005 recipient of the Humanitarian Award of the Houston Black Tie Dinner.