This article seemed relevant both because people with Hep C are often coinfected with HIV, and because ACT UP has a lot to teach the Hep C advocacy community about the urgency of finding a cure. Too often the State justifies under-investing in hepatitis patients because it's a disease that may still take anther 20-30 years to kill, and even then, they remind us, only about 15-20% of patients who have chronic hepatitis will develop serious liver damage, including cirrhosis and liver cancers.
The scale of Hep C infection far exceeds that of HIV, however, so even if HIV was more deadly and acted more quickly, at our present levels of investment in prevention and treatment, HEP C will kill far more. And the number of people infected by Hep C has already far exceeded those with HIV. As an illustration, for the month of April, 2010, the AZ Department of Corrections had custody of 183 prisoners they had identified as HIV+. That same month, the identified Hep C+ prisoner population was 6,096.
Think on that for a moment. About 50-70% of people with Hep C don't even know they have it, too.
The absolute numbers of new Hep C infections have come down across the country since 1992 (at which time it became possible to screen blood products for the virus, drastically reducing infections caused by transfusions and dialysis), deaths from advanced liver disease have still been rising, due overwhelmingly to hepatitis. In fact, unless there is dramatic intervention in the infectiousness and destructiveness of the virus, the mortality rate from liver disease is expected to double by the year 2020.
Those of us who have Hep C or love someone with it are tired of being told to "wait and see". We will work cooperatively with our partners as much as possible to leverage resources and get public support behind fighting this illness, but the State must remain ever mindful that every passing day without treatment brings those we love closer to what may be a terrible fate...and introduces thousands more to the possibility of the same. We saw the same thing happen with the AID epidemic, because the lives of most of those affected were so devalued by society. We would never have come as far as we have with AIDS research and resources for patients had it not been for people Acting Up.
We know what "wait and see" brings, and it is not an acceptable response to this epidemic. We aren't waiting any more.
Happy World Hepatitis Day, by the way.
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POZ Magazine
February 3, 2010
by Trenton Straube
After almost 20 years, AIDS activist group ACT UP is making news again. But what are their targets in 2010, and who is joining their fight?
Can HIV history repeat itself? The AIDS Coalition to Unleash Power (ACT UP) experienced its headline-grabbing heyday two decades ago. But in the past several months, the group has once again garnered media attention in efforts to shake up the status quo.
Members of a Philadelphia chapter helped shut down the U.S. Capitol Rotunda in July while protesting for HIV/AIDS issues. An ACT UP chapter formed in Wisconsin to take on a local AIDS service organization (ASO). Another started up in San Diego to salvage the county’s HIV/AIDS services from massive budget cuts. And as if on cue, religious conservatives got in a kerfuffle over a Harvard University exhibit titled ACT UP New York: Activism, Art, and the AIDS Crisis, 1987–1993.
POZ wondered whether this flurry signals underlying shifts in the culture—and in the HIV community—that could herald the return of ACT UP. We spoke with recent headliners for some insight.
But first, a quick history lesson. ACT UP launched in 1987 as a social movement to confront the government, big pharma and general public for ignoring the AIDS crisis. It consisted of autonomous chapters that sprung up across the globe. They conveyed their messages through politically charged posters and slogans such as “Silence = Death.”
Most famously (or infamously), they staged nonviolent acts of civil disobedience—such as chaining themselves to the balcony of the New York Stock Exchange in 1989—that forced the world to take note of the AIDS epidemic. And it worked.
“Every single thing that people with AIDS have today is because of ACT UP—every med, every legal protection, insurance, housing protection, their representation of people with AIDS in public, safe sex itself,” says Sarah Schulman, a journalist and former member who is posting a collection of interviews with ACT UP New York members on actuporalhistory.org.
It’s ironic that one of the movement’s biggest successes—advocating for the introduction of protease inhibitors, first available in the mid-’90s—helped usher in its near extinction. By the late ’90s, it seemed, the battle had been won. Local and federal AIDS groups were up and running. Meds were available. And once fewer people were dying, fewer people were protesting. With a few notable exceptions, the movement became defunct.
Or maybe it just went into hibernation, waiting to be reawakened.
Such was the case last summer in
Madison, Wisconsin. A group of about 10 activists (some HIV positive, some not) wanted to challenge a local ASO called AIDS Network to improve the quality and variety of care it offered. Aware of ACT UP’s history and name recognition, they decided to form a chapter.
The group spearheaded old-school protests outside the network and posted the ASO’s financial documents online. The tactics garnered attention.
But did they get results? In fact, AIDS Network has increased its client reassessment rate, opened a part-time food pantry and started a mental health service. “Our clients always received great care,” the network’s executive director Karen Dotson tells
POZ. “I’m very proud of what we’ve done in the last year and a half that I’ve been here.”
But she says the recent improvements were in the works before ACT UP Wisconsin started acting up. She questions the activists’ mission: “Are they a diverse group? Are they focused on people living with HIV/AIDS? Or are they just concerned with critiquing AIDS Network?”
“This is not about me,” counters ACT UP Wisconsin’s Bob Bowers. “It’s not about Madison or AIDS Network. This is about the bigger picture. For us to take a stand here, we’ve seen a ripple effect across the United States. Friends in Key West [Florida] are cheering us on. They’re wanting to form chapters in Arizona and California.”
Bowers’ fellow activists describe the bigger picture as a scenario all-too-often playing out across the nation. Many of today’s AIDS organizations are stuck in an ’80s mentality of only offering prevention and helping clients “from diagnosis to death,” says Greg Milward, a chapter member. ACT UP can nudge these ASOs out of the past, pressuring them to offer integrative services such as dental care and programs for mental health and substance abuse.
In many cases ASO clients are so grateful for any services, especially in the midst of a great recession, that they don’t dare question or complain, adds Della Haugen, also a chapter member. And if they do feel mistreated, they don’t speak out because they fear being penalized. ACT UP can empower them and give them a voice.
“We feel it’s important to have the ACT UP chapter because so much accountability needs to be out there,” Haugen says. “Even if the issues with the local ASO are resolved, there are other issues to bring up.” Indeed, the group has also met with U.S. Congressman Dave Obey (D–Wisconsin) regarding lifting restrictions on needle-exchange programs.
Activists certainly have their work cut out for them. But the main challenge, as Bowers sees it, is that “there’s an incredible sense of complacency within the HIV/AIDS community because they think that this work is being done.”
Mike Tidmus would agree and disagree with that statement. The San Diego blogger has no illusions about California’s inability to get the AIDS-related work done. He’s well aware that the state’s budget has imploded. In Wisconsin, the focus is on redirecting funds. In California, it’s on salvaging them.
Tidmus launched an ACT UP chapter last summer in hopes of doing just that. He also envisioned the group fighting HIV/AIDS stigma in the gay community as well as working to make medical marijuana, which is legal there, cheaper for people with an AIDS diagnosis.
But only about eight people showed up for the first ACT UP meeting, and there was even less interest in holding a protest. “I tried to light a fire to get people to show up for an annual [state AIDS office meeting], and it sort of fizzled,” he recalls.
“There’s a lot of apathy,” Tidmus says. “People who might have been involved in the ’80s or ’90s are on [HIV meds] now, so it’s not the big deal it was before.” In other words, to paraphrase ACT UP founder Larry Kramer: If there’s no outrage, there’s no ACT UP.
But notable exceptions come to mind. ACT UP Philadelphia has been meeting most every Monday night since 1988. Part of its longevity, says member Jose de Marco, is that its members “are people of color, a mixture of straight, gay, homeless, substance users—we reflect AIDS in this country.”
The Philly chapter takes up causes important to its members, such as local housing issues and global AIDS programs. In addition, de Marco notes that, despite using social networking sites such as Facebook to get messages out, ACT UP Philly still believes in taking it to the streets, to corporate boardrooms and even to the U.S. Capitol.
So when its members learned last fall that the state of Pennsylvania had failed to use more than $11 million in available federal funds and had to send the money back to Washington, they knew how to channel their outrage.
They staged an in-your-face direct action at a state AIDS funding meeting. They promoted it, filmed it and posted the clips online. They made headlines—just like they did back in the ’80s.
