AIDS advocates returning to their activism roots 

Protesters welcome arrests and publicity

AIDS advocates now say they look back at the late 1990s as a time when they never had it so good: New antiretroviral regimens turned HIV infection into a chronic rather than fatal disease; AIDS funding increased each year; and most states improved their funding for the AIDS Drugs Assistance Program (ADAP).

Sure, everyone had complaints each year when the budget was passed with a little less money than most in the AIDS community would have liked, but it was a far cry from the 1980s when AIDS activists routinely were forced to take to the streets to capture attention from the media, public, and politicians.

Now, AIDS advocates say, we’re back to the stark future of decreased funding, increasing need, and the reliance on protests, rallies, and civil disobedience to gain attention from the Bush administration and state governments.

Arrested development for advocates

During the first half of 2004, AIDS activists gathered at rallies in Washington, DC; California; and elsewhere to protest inadequate funding of ADAP. At the Washington, DC, rally, about 100 people among the 1,000 Protesters were arrested as part of a calculated civil disobedience, says Bill Arnold, director of the ADAP Working Group in Washington, DC.

Arnold, who was among the group arrested, says the event included marching by the Democratic National Committee and Republican National Committee headquarters and was organized civil disobedience in the best tradition.

"I’m too old for this," Arnold emphasizes. "But we made almost a half-page in the Washington Post, and we made CNN and Fox News and probably a few other places."

However, the rally had another impact that may have greater repercussions in the long term, he says.

"The word went through the advocacy community all over the country that the time for demonstrations is back," Arnold continues.

"I remember in the late 1980s and the early 1990s, you could get several thousand people in Times Square for a demonstration if you needed to. Sometimes, that’s what it takes to get back on the political radar," he notes.

Other activists agree.

"Yes, people are going to have to be prepared to scream and holler, and ADAP clients, particularly, are going to have to be visible and remind people how important these medications are to their long-term survival," says Dana Van Gorder, director of state and local affairs for the San Francisco AIDS Foundation.

AIDS advocates sent members of Congress empty pill bottles in January 2004, as part of their efforts to draw attention to ADAP’s underfunding. "We’re back to doing what we did at a time when the federal government wasn’t paying attention to our needs, and we again think the federal government, and in many cases the state governments, aren’t paying attention to our needs," says Ryan Clary, policy advocate for Project Inform in San Francisco.

"We’re back on the streets and getting arrested and are back to doing things we didn’t think we had to do anymore," says Clary, who also was arrested at the Washington, DC, protest.

"I definitely feel we are entering into very different times now," says Jeff Graham, executive director of the AIDS Survival Project in Atlanta. "We’ve gotten far too complacent."

Funding cuts to AIDS programs are coming from federal, state, local, and even philanthropic sources, he adds.

"Funding is starting to diminish, and this system is bursting at the seam with people falling through the cracks," Graham says. "People are getting sick; mortality rates, we fear, are going up. ADAP waiting lists and restrictions are more common, and agencies are cutting staff or even closing down."

Successful campaigns

AIDS activists cite several examples of how rallies and demonstrations, as well as traditional lobbying, have been successful, both in attracting public attention and in improved funding.

For instance, in Alabama, where there is a 400-plus waiting list for ADAP funding, a group called AIDS Alabama has lobbied state legislators since the mid-1990s.

This has resulted in an increase in state ADAP funding from zero dollars to $2.76 million last year, says Kathie Hiers, chief executive officer of AIDS Alabama in Birmingham.

Each year, AIDS Alabama holds a big rally day in the spring, scheduled to coincide with the state legislature’s budget decision time, she says.

"We encourage HIV consumers and other advocates to meet for a training session, and we give out materials and then go to the Hill and inundate the legislature with our materials and visits," Hiers explains.

"We go to the appropriations room wearing our red ribbons, and then we have a reception at noon and invite all legislators for heavy hors d’oeuvres, and we hold a press conference," she adds.

The group has considered protest rallies and had considered sending 100 coffins to the state capitol, but opted not to take a more confrontational approach at the suggestion of their legislative champions, Hiers says.

Also, they’d had a bad experience during their first year of activism.

"Our first year, we were pretty naïve and held a statewide training session with our HIV-positive consumers and we taught them how to go to the capitol and educate legislators," Hiers notes. "We got them together and trained them and unleashed them on Montgomery and had a [bad] reaction from legislators."

One legislator spit on an activist; another announced to the crowd that a woman, who happened to be a mother with five children, was HIV-positive, she recalls.

In California, where the state legislature already is sympathetic to the issue, taking-it-to-the-streets activism was very successful earlier this year.

AIDS groups held rallies in Los Angeles; in San Francisco, drawing 300 people; and in Sacramento, drawing 800 people, Van Gorder says.

At stake was California governor Arnold Schwarzenegger’s January budget proposal, which would have capped ADAP enrollment and created a waiting list, Clary explains.

"We estimated it would have put 800 people on the waiting list in the first six months," he says. "We did a lot of media work and put public pressure on the government, and advocates met with his staff in Sacramento."

A two-pronged approach

California AIDS advocates took a two-pronged approach: At the same time, they held large public rallies in support of ADAP funding, they met with the governor’s staff to show him how state spending on ADAP results in rebates from pharmaceutical companies, Clary adds.

"AIDS advocates want to make sure the rebate money goes back into the ADAP program because that’s one way of keeping the program solvent," he says.

The Schwarzenegger administration was responsive to the public demonstrations and to the media coverage that featured HIV-infected people who were at risk of losing their drugs, Van Gorder notes.

"We also were backed up by pharmaceutical companies who were saying, We’re providing these rebates to make certain the program is whole, and please don’t take them away,’" she adds.

As a result, Schwarzenegger revised his budget request to include additional ADAP funding, Van Gorder says. "We had been requesting an additional $25 million in the program, and he put in $27 million," she says.

Activist efforts in Georgia have kept that state’s ADAP in the enviable position of having a solvent program that provides antiretroviral therapy to people who are at 300% of the poverty level.

Its drug formulary provides about 60 medications in all classes of antiretrovirals, and the state’s funding has increased from $300,000 in the mid-1990s to $11.3 million this past year, Graham points out.

"It’s a program that now has widespread bipartisan support in the state legislature," he says. "We’ve done a tremendous amount of education about how HIV is no longer just a problem for metro Atlanta; it’s a big concern for people living in all health districts and counties in the state of Georgia."

Georgia AIDS activists focus on targeted legislative advocacy, working with the state health department to identify unmet need for the program on an annual basis, Graham explains.

People who are living with HIV and AIDS tell the media and legislators their own stories, and that has helped considerably with influencing legislative action, he adds.

However, AIDS advocates launched their lobbying efforts in 1996 with a large World AIDS Day rally on the steps of the state capitol, he says.

"We saw the AIDS drugs that were on the horizon, and we really used the events from the World AIDS conference to launch this campaign," recalls Graham.

A life-or-death issue 

Now, although Georgia’s ADAP situation continues to look good, the times call for a return to that type of activism, he adds.

"I feel that in desperate situations, you need to use every possible means of getting the word out," Graham says. "I was part of the group that was arrested in Washington, DC, where we went because we can see that Georgia is fine today, but Georgia might not be fine in six months or 12 months from now."

Activists wanted to send a message to policy-makers and the public that people’s lives are in jeopardy, he adds.

"It’s a life-or-death issue throughout the country, and I think life-or-death issues require an appropriate response even if it is confrontational," Graham says.

"If we’re not able to find a way to stop the backtracking and backsliding on AIDS funding, then we could be faced with a whole new epidemic on our hands," he adds. "It would be shameful for that to happen here, and it presents a challenge to all of us."