Holly Otterbein. Philadelphia CityPaper: The Warriors — How the decades-long fight against AIDS made radicals out of activists

The Warriors — How the decades-long fight against AIDS made radicals out of activists
by Holly Otterbein. Feb 9, 2011

Eight years ago, Cliff Williams would never have believed he’d spend his weeknights plotting guerrilla political warfare with a motley crew of white women, older black folk, dapper Penn medical students, homeless ladies, queer people, Jews and drug addicts. These are the people who make up a group of radical AIDS activists known as ACT UP — the AIDS Coalition To Unleash Power.

Politics was the last thing on Willliams’ mind when he found out, in 2003, on his birthday, that he was HIV-positive.

Williams, a middle-age black man who sports a single gold hoop earring and speaks in a soft, deceptively calm tenor, had always known this diagnosis was a possibility: His wife, Gwendolyn, was already HIV-positive. But things would get worse. Soon after discovering he had the virus, he and his wife became homeless. Williams moved into the Ridge Avenue Shelter, where he came down with scarlet fever, a disease that causes a person’s skin to peel off. At the hospital, Williams’ T-cell count — a measure of how many cells that fight disease are in your body — sank to 203. That’s just three little ticks away from 200, the point at which you are classified as having AIDS, which gnaws away at the immune system until your body is too weak to fight back.

Williams blamed the decline in his health partly on the shelter itself, where someone with a compromised immune system can be exposed to any number of illnesses by the sheer proximity (and, often, poor health) of fellow residents.

He eventually recovered, but was forced to make a tough decision upon his release from the hospital: Risk exposure again in a shelter or go it alone. “So I started staying in an abandoned building in West Philly,” he explains. “The roof had holes, but it was safer than a shelter.”

But then he was hit with yet another blow. Gwendolyn came down with lung cancer, on top of AIDS. The couple desperately wanted a home where she could at least die quietly, and they were hopeful: She was on a city waiting list for housing for people with AIDS. But Williams’ bad luck struck again, and Gwendolyn didn’t get housing until she was so sick she couldn’t leave the hospital bed. In 2009, she died.

Gwendolyn’s death left Williams with an unrelenting anger. Whatever mistakes he and his wife had made in their lives, it was unfathomable to him that they would be forced to wait for housing, literally as she lay dying.

Fortunately, Williams had a place to channel that rage. In 2004, while taking a class at Philadelphia FIGHT, an AIDS service organization, Williams was told about ACT UP. He attended a Monday-night meeting, and then wound up accompanying the group to a protest for additional global AIDS funding in Washington, D.C., where several activists were arrested.

“I had never seen people get arrested for civil disobedience before,” he says. “That was the beginning for me.”

ACT UP isn’t just another advocacy group: They are the A-Team of AIDS activism, a band of crack commandos always ready to parachute in, their rhetorical guns blazing. Fail to listen and suffer the consequences: They’ve been known to swarm the mayor’s home to demand housing for people with AIDS, take over the Capitol Rotunda to press Congress to lift a federal ban on funding syringe exchanges, and shut down the Food and Drug Administration in protest of slow approval times for AIDS drugs.

Twenty years ago, there were more groups like this around the country. But AIDS has been quietly fading from the public eye — even as medical officials warn of an impending domestic AIDS crisis, especially among minorities and poor people — and AIDS activism has diminished along with it.

The ragtag Philly chapter of ACT UP now finds itself one of the last bastions of die-hard AIDS activism. But it might also represent the beginnings of a whole new AIDS movement — one that looks decidedly different than what came before it.

Kaytee Riek

MAD AS HELL: ACT UP Philly protesting the “broken promise” of the Obama administration to increase funding for AIDS programs around the world.

In the ’80s and ’90s, the early days of AIDS activism, you probably wouldn’t have seen a man like Williams — straight, black, poor and formerly homeless — leading the charge.

Back then, AIDS activists used to be a lot wealthier, gayer and a whole lot whiter. In 1985, men having sex with men accounted for 64 percent of HIV transmissions in the U.S., so it was only natural that gays, especially men, were most prominently fighting the epidemic.

“This was a time when your whole community was dropping dead,” says Jose de Marco, a longtime Philly ACT UP member. “I lost an 18-year partner to AIDS because there was no medicine. And people were saying we deserved it, that this was God’s punishment.”

The first ACT UP chapter sprouted in New York City, where hundreds of gay men showed up at weekly meetings to plan wild, provocative protests urging the FDA to shorten its approval process for AIDS antiretroviral drugs. Only a handful of other AIDS advocacy groups existed at the time, and ACT UP was by far the most radical. They were fueled by a desperate anger: The longer the approval process took, the more friends they’d see die. So they did anything to make the drugs available — get arrested, shut down the FDA, chain themselves to the balcony of the New York Stock Exchange.

Like ACT UP New York, the Philly chapter was also mostly white and homosexual. Gays, after all, bore the brunt of the disease. They had no one but themselves.

“Nobody cared,” says de Marco. “That’s what made it so scary. It was affecting people who society deemed expendable: queers.”

So ACT UP fought back, and often won: They shut down the FDA for an entire day — and within weeks the FDA drastically shortened its approval time for antiretroviral drugs. They stormed the New York Stock Exchange to protest the high price of AZT, the only AIDS drug available at the time. Four days later, the drug company lowered its price to $6,400 per person per year. ACT UP Philly even wrote one of the first HIV Standards of Care, guidelines for HIV treatment.

“I was sending them everywhere — to England, to France,” de Marco says of the guidelines, “because no one knew what to do about it. It was a very dark time.”

But by the mid-’90s, ACT UP chapters began folding across the country. What had happened?

Ironically, it was their very success that began to eat away at their membership: As gay men got better access to medicine — especially white and middle-class men who could afford it — they drifted away from activism.

Those remaining AIDS activists began to shift their focus to policy on the global AIDS epidemic, or began working for the government, trying to change the system from within. ACT UP Philly, though, plotted a different course.

“Other chapters were dwindling or dying because white men were leaving,” says longtime member Paul Davis. “But we decided to be aggressive about putting race and poverty at the core of every campaign, to be really up-front about who AIDS was now affecting.”

Though the face of AIDS had changed, he says, one truth remained: “Nothing has ever been given to people with AIDS. All we’ve ever gotten, we’ve fought for.”

MAN ON A MISSION: Cliff Williams watched his wife die of AIDS while on a wait list for housing for people with the disease. Now he intends to end that wait for others — by whatever means necessary.

Besides cheesesteaks and the city-wide special, Philadelphia may prove to be home to something more vital: the rebirth of American AIDS activism.

In her 2002 book AIDS and the Policy Struggle in the United States, AIDS scholar Patricia Siplon writes, “The largest and most active chapter of ACT UP in the country is ACT UP Philadelphia,” adding that it “is reflective of the evolution of AIDS and the groups that have become active players. At least half of ACT UP Philadelphia’s membership is composed of people of color, mainly drawn from low-income areas of the city.”

Asked if that’s still true nine years later, Siplon doesn’t hesitate. “Oh, yeah,” she says. “ACT UP Philly has always done a much better job than other AIDS organizations at ensuring that people who are infected and affected are not only part of the group, but they’re leaders. I think that’s made the difference.”

In fact, she says, ACT UP Philly may be the seed for a new type of AIDS activist.

“The next push is on the domestic front,” says Siplon — but only if activists can figure out how to involve the disenfranchised populations that the virus now targets.

ACT UP Philly is probably one of few groups in the nation that can claim to have started to do that. The group understands that AIDS hasn’t gone away but has instead been moving to new populations: poor folks, the homeless, drug users. The disease has seen a pronounced increase in black communities, as well: According to the Centers for Disease Control and Prevention, African-Americans make up just 14 percent of the U.S. population but 50 percent of all diagnosed HIV cases. That’s up by 4 percent since 2009. Black females, meanwhile, are 19 times more likely to contract HIV than whites, while black men are eight times more likely. More and more, the virus is attacking very specific, often impoverished neighborhoods such as Germantown and Southwest Philadelphia.

So ACT UP Philly began to lobby for issues that hadn’t previously been part of AIDS activism: for more housing for people with AIDS, for people in shelters to be able to control their own AIDS medication. And they began recruiting new members in unexpected places, like halfway houses, shelters and jails.

“We started to remake the group,” says Davis, “from mostly white men into a beautiful animal that’s multi-racial, multi-class, Muslim and Christian, gay and straight. That’s partly why ACT UP Philly has remained the only vibrant chapter in the country.”

With their new disparate crew, they pounded victories out of powers-that-be like blood from a side of beef. In 2006, they persuaded the city’s prisons commissioner, Leon King, to give condoms to inmates — an idea partly inspired by ex-offender and ACT UP member Waheedha Shabazz-El. To this day, Philly is one of the only cities in the country to do so.

King, now a lawyer, says, “I love those people. … Waheedha Shabazz is my favorite protester in the whole wide world.” The group so affected him that, while at a New Orleans conference for state correctional administrators, he suggested that other prisons give out condoms. “I thought that was entirely reasonable because Waheedha made me believe it. The whole room went quiet.”

In 2007, after ACT UP staged a high-profile, negative protest at a Drexel University debate between then-Democratic presidential candidates Barack Obama and Hillary Clinton, Obama pledged to provide $50 billion to fight global AIDS. A day after they swarmed the Capitol dome in ’09, linking themselves together with a chain and chanting, “Clean needles save lives,” the House was reconsidering the federal ban on funding syringe needle exchange and later lifted it.

According to AIDS experts, ACT UP Philly played a critical role in the creation of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), President George W. Bush’s pledge to give $15 billion to fight global AIDS — which he eventually tripled in ’08. “That’s a $48 billion authorization. That’s incredible,” says Jennifer Flynn, managing director of Health GAP, a global AIDS advocacy group. “Who wins $48 billion from our government?”

Their present battle has proved more elusive: They’re asking Mayor Michael Nutter to set aside $2 million to $4 million to provide housing for people with AIDS — no small sum in a city that’s temporarily closing fire companies to save cash.

ACT UP members argue that this is not just a problem for homeless people, but for all of Philadelphia. If HIV-positive people have homes, they’re less likely to stop taking their medication, engage in risky behavior or be exposed to fatal infections. And while on medication, people with AIDS are less likely to transmit the virus at all. More housing, in other words, should mean less HIV.

On the surface, this yearlong campaign might look like a bust. Not a single public official has promised to address the issue. Mark McDonald, Nutter’s spokesman, says only that the mayor won’t announce any decisions about funding until the budget is presented. Dainette Mintz, director of the city’s Office of Supportive Housing, says she understands some of ACT UP’s complaints but is bound by funding: “In a large facility with a couple hundred people, there are absolutely any number of things that a person with a compromised immune system would want to avoid,” she says. “But there’s a waiting list for every form of affordable housing. Unfortunately, demand exceeds resources.”

Then again, seemingly lost causes are ACT UP’s speciality: Their modus operandi is to push and push — and pester and embarrass and shut down and get arrested — until they win.

Last summer, the group issued a report revealing that in the previous 18 months, at least eight people with AIDS died on the streets. The report also found that in June 2010, the waiting list for housing for people with AIDS included more than 200 people. (According to the city’s AIDS Activities Coordinating Office, there are now 165 people on the list.)

At the end of 2010, ACT UP — with the help of member Luke Messac, a well-connected Penn medical student — got more than 80 medical professionals to sign a statement urging the city to provide housing not only for people with AIDS but also for those who are HIV-positive but don’t have AIDS, in order to help keep their immune systems healthy. An op-ed about the medical statement, written by two of the co-signers, ran in the Inquirer.

“They’ll win the housing campaign,” says Flynn, Health GAP’s managing director. “They always do, right? No, really. Seriously. They do always win.”

 

ACT UP’s members aren’t just devoted. They are obsessed, haunted by their cause.

Every single Monday for more than a decade, ACT UP has met in the same church at 13th and Pine to hold its weekly, three-hour meeting. They begin by reciting their rabble-rousing pledge: “ACT UP is an all-volunteer organization, and we are united in anger and committed to ending the AIDS crisis through direct action.” Then they plot how to win.

Their protests are no less intense, though not without a dark sense of humor. This December, 15 rowdy ACT UP members converged on Nutter’s block. They walked slowly down the street, carrying candles to symbolize the deaths of homeless people with AIDS, until they arrived at the mayor’s house. Then they cranked up their car stereos and sang carol after carol, at the top of their lungs.

“Nutter, the Philly mayor/ Said to folks with HIV/ Sorry that I can’t help you/ But it’s not up to me.”

Beyond this battle, the bigger question is really whether ACT UP Philly and groups like it, the last vestiges of a seemingly diminished movement, can win the larger war to make public officials keep caring as AIDS spreads to an increasingly disenfranchised population.

ACT UP hopes to recruit and keep fighting using the sharpest tool in their kit: anger — the kind of anger that comes from suffering and watching loved ones suffer from AIDS. Shabazz-El conceived of the condoms-in-prisons campaign after being in jail herself, where she discovered she had AIDS. De Marco, meanwhile, joined the group after his partner of 18 years died from the disease. And Williams helped think up the current campaign for AIDS housing after watching his wife shrivel away without it.

It’s the same anger that, decades ago, turned a different generation of those inflicted with AIDS into activists — just coming now from a new and profoundly more diverse group of people. Their movement, though, has yet to build the momentum seen in earlier days.

“I think there could be another really exciting wave of activism,” says book author Siplon, pointing out that a shuttered ACT UP chapter in Baltimore recently opened its doors again under new leadership: “Immigrants. Their leadership is women immigrants from Cameroon.”

It’s not much so far — a single, inexperienced, ramshackle operation in that city. But if history is any teacher, odds aren’t bad that this is just the beginning.

 

 

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