BY Bob Adams
November 20 2009 10:00 AM ET
Although Michael Weinstein, cofounder and president of Los Angeles-based AIDS Healthcare Foundation, says the two main pillars of the organization he leads are direct care and advocacy, it's perhaps the latter for which the agency's leader is best known.
AHF -- initially formed as an L.A. hospice in 1987 -- is certainly a world leader in providing HIV care, treating nearly 110,000 HIVers in 22 countries. Domestically, the organization operates 17 health care centers, including two new clinics opened this fall, one each in San Francisco and in Washington, D.C. The agency also promotes safer sex through the Love Condoms campaign and in 2008 spearheaded a project that succeeded in testing more than 1.6 million people around the world for HIV. It also operates nonprofit pharmacies that specialize in HIV treatment as well as the Out of the Closet chain of thrift stores.
Despite these impressive achievements for AHF, though, Weinstein more often grabs headlines for his fierce activism and advocacy.
During the past decade, he and the agency have played a key role in pressing drugmakers for triple-drug-therapy price cuts, particularly for low-income HIVers in developing nations. For example, Weinstein says that when AHF began offering antiretroviral treatment in Uganda the average yearly per-person cost was more than $5,000. Today, it's just $82. And while continuing to advocate for affordable medications, Weinstein also is championing improved access to HIV treatment.
"It's my job to fight for access," he says, "for every one of the 33 million HIV-positive people around the world."
But some worry that the ends may not always justify the means through which AHF accomplishes its goals. For example, the organization is currently targeting Merck's pricing of integrase inhibitor Isentress, and this fall literally brought the issue into the homes of all the company's employees and their families with a mass mailer about the matter. AHF also routinely turns to the courts, including suing Pfizer in 2007 over its marketing campaign for Viagra, which AHF alleged encouraged risky sexual behavior. Additionally, the agency is suing to force adult-film companies operating in Los Angeles County to require on-set condom use.
These sorts of bold efforts have earned Weinstein a reputation as something of a rabble-rouser -- in both the good and bad sense of the phrase. But he is decidedly unconcerned about any criticism that he or the organization receives.
"When all is said and done, if the worst thing anyone can say about me is that I offended drug-company executives, I can definitely live with that," Weinstein insists. "I might even consider it a badge of honor. The bottom line is that, up to this point, the virus has been smarter and far more aggressive than we've been. If we're going to put an end to the era of AIDS, we're going to have to be just as aggressive and smart as the virus."
Like many other HIVers in the mid 1990s, Phill Wilson saw his health begin to fail and he found himself unable to work, causing him to leave his job as director of policy and planning at AIDS Project Los Angeles and go out on disability. But also like so many of his peers at that time, he was brought back from the brink of death by the arrival of protease inhibitors and triple-combination therapy. By 1999, Wilson was even feeling healthy enough to start thinking about returning to work.
"I looked around to see how things had changed while I was away, and I discovered a glaring lack of progress in mobilizing the black communities hit hard by the disease," notes Wilson, who's also served as AIDS coordinator for the city of Los Angeles and cochair of the L.A. County Commission on HIV. "That was the genesis of the Black AIDS Institute."
The L.A.-based institute, the first national HIV policy center focused exclusively on black people, works to end the AIDS epidemic among blacks through training and capacity building, information dissemination, policy work, and mobilization and advocacy. Under its motto, "Our People, Our Problem, Our Solution," the institute reaches out through its Black Gay Men's Network, "Test 1 Million" campaign, and highly successful African-American HIV University, which trains organizations and individuals to fight HIV in their local communities.
The institute also drew international attention in 2008 with its report "Left Behind," which showed that if black Americans by themselves populated a separate country, that country would have more HIV-positive people than even such hard-hit sub-Saharan African nations as Botswana and Namibia.
"One of the reasons HIV has -- and in many ways continues to have -- a disproportionate impact on black Americans is that AIDS was very quickly branded as a white, gay disease," explains Wilson, 53, who has been HIV-positive for nearly 30 years. "That created a perfect storm. Black communities didn't want to respond to the epidemic because they didn't want to take on another stigmatizing issue, and the messages coming out were that they didn't need to because it didn't affect them. Meanwhile, the house was on fire."
Although Wilson has seen what he calls "miraculous" progress in the black population's response to HIV during the past decade, he insists there's still much more work to be done. "Our goal today is exactly what it was when we formed the institute -- to get black folks to take ownership of the epidemic," he says. "We believe, quite frankly, that the only way to end the AIDS epidemic in the United States is to end it in black communities. It really is as simple as that.”