Being Alive, Los Angeles; Feburary 1998
Napoleon Lustre

I've said it before. While some may speak of this changing "face" as if it is a recent phenomenon, the face of AIDS changed for me a long time ago. It changed in January 1986 when I tested positive for HIV, as a 20 year old sophomore in college. My face did not look like any face I had seen in any AIDS education campaign at that point. And some have argued that the face of AIDS has always included people of color; we were simply not tracked by epidemiologic instruments, at least not as well as they tracked the predominantly white, middle-class, medically insured first reported cases of Gay Related Immune Deficiency.

In any case, as far as ethnic and gender shifts in the epidemic, I would say the numbers are definitely changing, but we cannot say this is new. My real point is that however we may define the HIV-infected community, we cannot afford to disregard issues of fair representation of all people: people of color, the rich, whites, undocumented immigrants, the homeless, IV drug users, pediatric cases, transgenders, people in recovery, sex workers, the solidly middle-class, the deaf, the protease-intolerant, and the fortunate (for now) "Lazarus" peopleanyone living with HIV/AIDS is one of us. And if we want to genuinely represent our entire community, then we cannot cower from discussions of race, sex, class, and the other ways that we are divided. Only by being honest can we even try to unite.

But the "face" of AIDS metaphor is not only about seroprevalence. It is also about the face of the AIDS/HIV landscape (oh no, another metaphor). The list of services that we need is changing. We, the HIV-infected and the people living with AIDS must be the ones to determine what that list is, what it will become. Not service providers, not pharmaceutical companies, not politicians or bureaucrats in Washington, Sacramento, the County or City, or your favorite AIDS service organization.

Public perception of HIV/AIDS is also changing. With the hype around advances in medical technologies, the failure rate of protease inhibitors is hardly covered in the media. In this society's rush to believe that the AIDS crisis is over, we are the ones who will suffer from premature funding cutbacks, and increasing insensitivity to our realities as people who are still trying to cope, trying to live, trying to maintain some degree of control of our own destinies.

I mentioned funding cutbacks. This is the grim reality. Some serious attention has to be given to this problem. Basically, every single AIDS organization is feeling the squeeze. I don't want to see other AIDS service organizations as competition. The trend is one where collaborative projects are the ones getting funded, and that's a good thing. We will work with any good organization when we can. But Being Alive should always take a proactive role in leading these projects because we are still the only organization of, by and for people with HIV/AIDS in LA County.

We at Being Alive have to be creative and successful in our search for the dollars that will guarantee our survival and success. We have to be clear about our relationships with pharmaceutical companies when we ask them for funds. We will always, always look out for the interests of people with HIV/AIDS.

On the same note, it's time for us to put more resources in advocacy. While we will always prioritize services for our members, we can no longer afford to stay out of the high places where funding decisions are made. Sadly, the system has it that we have to buy our place at the table.

Meanwhile, hit up your friends, family, workplace, schools, any charitable or philanthropic body, senators, representatives, and if you have the resources, yourselves. Being Alive can definitely put these funds to good use.

These are just some of the ways the face of AIDS is changing. I would love to hear from anyone for comments, discussion, challenges. If we don't talk about this, it will be talked about for us.

In solidarity.

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