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Robert Vazquez-Pacheco on Race, ACT UP and Why Older HIV/AIDS Leaders Need to Pass the Torch

May 10, 2012

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What do you think were some of the significant achievements of ACT UP?

Well, first, I would say that they put AIDS on the map. They actually brought AIDS to the public's attention. And, in doing that, they also put gay men and lesbians on the map. The whole gay marriage and the whole gays-in-the-military discussions could not have happened without ACT UP and organizations like Queer Nation.

Because here we had "fags" and "junkies" saying that they had rights, and demanding them, which is a totally revolutionary concept. It wasn't like we were living in shame or dying quietly. We were saying, "We're citizens and we deserve to be treated like any other citizen, and to have expectations of our society the same way that any other citizen has, any other member of our society has." So, in some ways, that was an achievement of ACT UP. That was a byproduct.

I think the second thing they did was that they made people and institutions accountable. They absolutely took to task public health officials, government officials, the media, the Catholic Church, society in general.


And, obviously, ACT UP is responsible for "Getting Drugs Into Bodies" and we did that spectacularly. And not only did we do that, but we also totally revolutionized the entire drug research and approval process. One of the ways we did that was by opening it up to public scrutiny, which had never been done before. We showed researchers that there are real human consequences to what they're doing and saying. Their research affects human lives, and this is why they do it. In some ways, we made it more ethical and gave researchers a serious wake-up call.

Also, I think ACT UP revolutionized the doctor-patient relationship. We pushed for people to have a "You know what? I'm not passive here" approach. I can't tell you, Kellee, how many times that I'd get a new doctor, and I would say, "Can I clue you in on something that just happens to be a fact -- that you're working for me? OK? You're working for me. I'm paying you for this service."

Right. It's about being an empowered patient.

Absolutely. And it's the fact that you could. I had started doing that with Jeff, when we were in the hospital. I would question his doctors and the nurses, and everything else. I would drive them crazy, you know? But what that meant, for example, was that I became a much savvier patient and questioned doctors.

Finally, in terms of achievements, ACT UP actively encouraged, or spawned, if you will, AIDS activist movements around the world, and showed people that, "Wow, you can actually stand up." In some ways, the Tea Party is another sort of result of ACT UP activism -- they are the child we wouldn't want to acknowledge. [Laughs.]

If you had to name some failures of ACT UP, what would they be?

ACT UP didn't dream big enough. We should have been talking about universal health care from the beginning. We should have been talking about that, so that we could have put it on the map; so that by today, this whole concept of universal health care would not have had the response that it did or accusations of it being socialist.

But we also didn't cross disease lines. I would advocate this all the time: We need to approach the people with cancer. We need to go to women with breast cancer. We need to go to people with diabetes. We need to pull all these groups together and pool our interests and where our interests lie together. Because the changes that can happen for one will benefit us all.

I also think that ACT UP was a shortsighted movement that didn't plan for what might happen in the future. We wanted to get "Drugs Into Bodies," but then we never thought about at what cost. We never took the conversation on about big pharma. We never expanded the battle about big pharma, which I think is another major failure. Because now activists agree that early treatment is the best way to deal with HIV infection. But that means more money in the hands of the pharmaceutical companies.

How has AIDS activism changed since the days of ACT UP?

Well, a lot of AIDS activists from the past either burned out or they died. Also, in the wake of protease inhibitors, some activists moved their focus toward international work. Just look at how people work for places like the U.N. In a way, their attitude is like the epidemic in the U.S. is over. "HIV is a disease of the poor, and people of color. That's not my problem anymore. So we can go worry about the children in Africa and not the children in Alabama."

I think that that's what happened, that there was a shift of attention. "We got ours. We have our institutions. We have our medications. We have our government bureaucracies now. So, this is how it is." I think also that part of the problem is AIDS, Inc. It's wild, you know?

Yes, it is. Charles and I talked about AIDS, Inc., and how depending on places like the health department for grants can stop someone from speaking out against those same places that give you money. People who are running organizations are making hard decisions and really having to think about how their actions impact an entire community. Because that can be the difference between continuing a testing campaign in East New York and it not being funded again next year.

Also, in terms of AIDS, Inc., we get this very limited sort of wedge of the pie that we have to work with. We're told that, "This is the slice, and you all have to compete for your little bit of the slice." And no one says, "Why can't the slice be bigger?" So what everyone does is everyone just jumps into the competition.

Which has AIDS, Inc., functioning like Flavor of Love. Everybody is fighting each other to win this one little rapper with gold teeth. I have heard organizations say things like, "Why is that gay org getting more money than my organization that focuses on women?" It's really sad.

Yeah. I had never really experienced that until I started working in Philadelphia doing community plans and community prevention. Before I moved to Philadelphia, I had never seen such a fractious group of service providers. I would come into meetings and people would be arguing with each other. I would have to get up and yell, "Can we stop arguing with each other, and deal with an epidemic?" I said, "This is like rearranging deck chairs on the Titanic, OK?" It's like, "Stop that."

A mess. The ship is going down, and you guys are not paying attention.

Exactly. People are getting infected, meanwhile you are arguing with each other about who is going to stand on the next street corner. Very frustrating. What I also think happens -- and it's an inherent problem of all nonprofits -- is that they are always scrambling for money and resources. Because so many are not able to pay competitive salaries that reflect people's expertise and experience, they lose some of the best and the brightest talent. This is why a lot of great people take off for the for-profit world. And this happens to communities of color all the time.

But what also happens in the nonprofit world -- and this is speaking from 20 or so more years in the business -- is that they take advantage of people's commitment by making them work like dogs, and paying them less.

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