How Do You Resuscitate the HIV/AIDS Movement?

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I don't think you resuscitate that unless there's a similar kind of threat and fear. I think that the prescription, if you will, is to go back to what was so effective in the early years of the epidemic about empowering the people who have the virus. There are all these anti-stigma campaigns that are burst adds, bill boards and, whatever, and I think in terms of reducing stigma most of those are useless or even counter productive.

You can raise awareness of the epidemic and increase stigma at the same time. The only way to really effectively reduce is stigma, is to empower the stigmatized. I'm much more concerned about giving people who have the virus, people who are being stigmatized, the tools to manage their condition, and improve the quality of their lives, than I am about trying to change the minds of those stigmatizers.

So, I think that we need to go back to supporting these networks of people with HIV, having people with HIV engaged in a greater and more meaningful way in the development of policy, and implementation of policy and delivery of services, that was an important part of the epidemic in the early years.

Sometimes people talk about the 1980's and the communities response to the epidemic, the LGBT communities response to the epidemic in almost nostalgic term. And what they are nostalgic for? Was that very powerful sort of community-wise sense of loving, caring, where you saw the very best phase of the gay community being presented to the world.

A world that hadn't thought of it as a community before, thought of it only in sexual terms. And you saw in a millions of acts of heroism, people who totally turned around their lives in order to care for a neighbor, friend or someone, and that was all part of the empowerment movement.

The healthcare system wasn't serving us then. We were being allowed to die by the agencies that could have done something. So, the self empowerment movement was really a Do It Yourself Movement. It was saying let's take care of each other, let's start research organization, let's start buyers, let's be each others experts and do it ourselves, and that created this whole parallel service delivery structure the big AIDS organization, Gay Men's Health Crisis, AIDS Project Los Angeles, San Francisco AIDS Foundation.

They were started by people within the community. They are boards of directors, or people with AIDS, their partners, their closest friends. They never had board meetings so they talked about them referring to the clients, because the clients are right there, and it was a peer-to-peer service delivery model that over time much of it has incrementally reverted back to the more traditional benefactor victim service delivery model.

So, the things that we can do will be to go back to that peer-to-peer model that we know was so effective, and support the empowerment of people who are most directly affected. That will reduce stigma that will produce better health outcomes at less cost.