Philadelphia ACTUP chapter going strong

Waheedah Shabazz-El is a 58-year-old heterosexual African American Muslim woman from Overbrook who discovered she was HIV positive while in prison in 2003.

She also is a member of the official U.S. delegation to the United Nations' high-level meeting that this week will test the extent of the world's commitment to ending AIDS.

In who she is and how far she has come, Shabazz-El represents the trajectory of an epidemic that has infected more than one million Americans and 60 million people worldwide - and triggered powerful advocacy forces that have changed medicine and culture - since a weekly federal report first described a mysterious disease in five gay men 30 years ago on Sunday.

And she epitomizes an organization - Philadelphia's chapter of the confrontational, in-your-face group ACTUP - that over the decades has become a national leader, playing key roles in getting cheap drugs to countries around the world and shaming political leaders into funding them (although, as the activists will make clear at the United Nations, not nearly enough).

While most other chapters dwindled to nothing as their founders - nearly all gay white men, the early face of AIDS - died or got burned out, Philadelphia's ACTUP reached out and diversified to represent an epidemic that is now largely black, Latino, and poor. Activism, taught through classes and in street protests, became part of healing and, for some, life-changing.

When she was diagnosed with AIDS, Shabazz-El, a retired postal worker, lost all hope - of marrying again, of seeing her grandchildren grow up, of going on. "That person no longer exists," she said the other day, flagging a taxi after all-day meetings in Washington to develop strategy for the U.N. meeting. "That person had to die so I could live."

Members of ACTUP Philadelphia say - and seem to really mean - that they don't notice color or class.

"We've got your medical students, we've got your doctors, we've got your social workers, and people who are fresh out of jail after 10 years, and drug users, and homeless people, and nurses, and anarchists - and the whole philosophy of ACTUP [Philadelphia] is that we are all peers," said Kate Krauss, a middle-class white woman who is HIV negative.

Krauss grew up in Wilmington and returned here in 1996 after years of organizing in California. She is one of a series of activists of different eras to find that the city is "fertile ground" for social change.

In a Kensington rowhouse in 2009, Krauss and others branched out, founding the AIDS Policy Project to raise the profile of an idea that has been surprisingly absent from the national research agenda in recent years: discovering a cure.

Two months ago, in the most promising finding in years that might lead to a cure for AIDS, University of Pennsylvania biologist Carl June presented evidence that immune cells taken from a patient's own blood could be reinserted with a single gene snipped out so they no longer make a receptor that HIV needs to enter the cell. The engineered cells avoided HIV infection in all nine patients tested and multiplied significantly in eight for various periods of time, the longest back to July 2009.

The activists had nothing specifically to do with the Penn research. But they regularly buttonhole lawmakers, work the media, and hold meetings to get scientists to collaborate.

Thirty years ago, before it had a name, the wave of pneumonia and cancer caused by a breakdown in the body's immune system was dubbed the Gay Plague. It swept through homosexual communities in San Francisco, New York, Los Angeles, and other cities.

By the time the cause - a germ now known as the human immunodeficiency virus - was identified, it was spreading through needles and blood to intravenous drug users and hemophiliacs, from mothers to babies, and, more slowly, through heterosexual sex.

Philadelphia was not the hardest-hit early on, but there was no mercy. With little known medical information and no treatment at all, people went where they could. David R. Fair had connections - he was secretary-treasurer of Local 1199-C, the hospital workers' union - and had a house in East Mount Airy.

"For quite a while I had my own little AIDS housing program there," Fair said. He cared for three or four people at a time, with constant turnover. "They all died while they were living with me. I wasn't just being a Good Samaritan. I felt like I had no choice. I hated it," said Fair, who became the first director of the city's AIDS Activities Coordinating Office in 1987 and now consults for nonprofits.

Beginning in the mid-1990s, powerful antiretroviral drug "cocktails" lifted that death sentence. They also contributed to a dramatic shift in the demographics of the epidemic. As HIV became a chronic, although difficult-to-manage disease, it increasingly afflicted the most vulnerable populations.

Men who have sex with men still are at greatest risk both here and nationally. A study of 21 cities, including Philadelphia, released last week found average infection rates of 9 percent in that group.

But Philadelphia also has one of the highest big-city poverty rates and one of the greatest proportions of African Americans, and now it has one of the worst epidemics in the United States.

Nearly 1.3 percent of the population is living with HIV/AIDS, according to the city Department of Public Health. Just over 2 percent of blacks (and 2.8 percent of black males) are infected, and just under 2 percent of Hispanics; for whites, it is 0.6 percent. More than 12,000 people total have died of AIDS or related conditions, including 300 to 400 a year recently. And 20,000 are infected with HIV.

ACTUP (AIDS Coalition to Unleash Power) burst on the scene in New York in 1987 to fight for gay men's lives.

People "were really radical in setting up things because the government was not doing anything," said David Acosta, an early member of the Philadelphia chapter that formed soon after. "But tons of people who were living with HIV/AIDS, they were like, 'I'm dying, I've got to do something.' "

Acosta, who now oversees prevention for the city's AIDS office, was a rare minority in the group; his family emigrated from Colombia when he was 10. Another was Kiyoshi Kuromiya, a Japanese American protégé of Buckminster Fuller, Internet pioneer, and civil rights activist; he led a 1962 sit-in at a segregated Maryland restaurant.

As AIDS spread, Kuromiya, who had no medical background, traveled to scientific conferences and tracked down researchers. He cowrote what may have been the first published standard of care for patients.

"It was what was known. And what was known was not very much. You could fit it on four pages," said Jane Shull, executive director of the AIDS service organization Philadelphia FIGHT, who has been deeply involved with the epidemic almost since the beginning.

Her organization hosted Critical Path, a monthly newsletter with medical and other information that Kuromiya edited and was mailed to nearly 10,000 people and, at the time he died (of cancer in 2000), reached at least 50,000 people in 118 countries on the Web.

By then, the drugs that saved lives had also diminished the urgency of the gay-activist response. Hundreds of ACTUP chapters were disappearing. Not Philadelphia's.

"There were a number of us who were duty-bound to make sure it continued after others died," said Julie Davids.

She and Jeff Maskovsky, for example, reacted by starting Project TEACH. It stands for Treatment Education Activists Combating HIV and still does exactly that - eight weeks of classes that instruct infected people, often at society's fringes, in how to stay healthy and to advocate for their care. They built bridges to other communities, such as drug recovery houses.

When ACTUP planned protests, hundreds showed up. "For some of the people to stand at the Capitol and say, 'No you can't do this!' it was a really important part of their recovery," said Davids, who went on to found a national social justice alliance for HIV/AIDS and now coordinates the network from her home in Providence, R.I.

Maskovsky, now an anthropologist at Queens College in New York, believes that a "black radical tradition" born partly of long-term neglect of African American health in Philadelphia helped AIDS activism cross color lines.

ACTUP started the city's needle exchange, now proven to have dramatically reduced infections among intravenous drug users. It expanded distribution of condoms in prisons, where infection rates are high. In recent months, it picketed Mayor Nutter's house and interrupted his budget address to push for more money for AIDS housing (without luck so far); homelessness is known to be a factor in spreading HIV.

The biggest campaign by far began toward the end of the 1990s.

As more people were living with AIDS in the United States, millions more were dying in developing countries because the drugs, at more than $10,000 a year, were out of reach. Pharmaceutical companies refused to cut prices on a mass scale and would not allow generic versions.

South Africa wanted the legal right to break patents and supply emergency drugs. U.S. policy, headed by Vice President Al Gore, was supporting the drug companies. It was spring 1999; the presidential campaign was about to start.

On a conference call among activists in several cities, "somebody said, 'Hey, isn't he going to announce his candidacy?' " recounted Paul Davis, who stayed in Philadelphia to call political reporters around the country as protesters descended on Carthage, Tenn., with a banner that said "Gore's greed kills. AIDS drugs for Africa."

The pressure mounted throughout the campaign, successfully changing AIDS drugs pricing from an economic issue to a moral one, said Davis, 42, who is now the Nairobi, Kenya-based director of global campaigns for Health GAP, the group that he helped form for that purpose.

President Bill Clinton signed an executive order that changed U.S. policy toward South Africa in May 2000. Major drug companies began offering steep discounts to developing countries the next day.

Many organizations had been involved in the effort, but much of the leadership was here. "And it was hundreds of people from Philadelphia, primarily African American people living with HIV, who came out for the rallies," said Julie Davids. "People said, 'I have seen the difference these drugs have made in my life and loved ones, and I will not let that happen.' "

Even with treatment costs down to a few hundred dollars a year, many countries still could not afford them. In a stunning 2003 State of the Union announcement, President George W. Bush pledged $15 billion over five years to fight the pandemic.

Still, two million people a year were dying of a treatable disease. For the last presidential campaign, ACTUP wanted to triple the commitment for the next five years. Its members bird-dogged candidates around the country. Barack Obama was one of the holdouts.

In the days before the Democratic presidential debate at Drexel University on Oct. 30, 2007, activists told the Obama campaign to expect grave diggers with shovels and signs saying "Obama AIDS Policy: Dig More Graves," Davis said. He still has a copy of the faxed statement from the Obama campaign pledging $50 billion over five years, signed by the future president on Oct. 29, 2007.

The recession hit two months later. Funding for AIDS hasn't kept up.

"Obama has got blood on his hands. He made a promise, and he won't keep it," said Jose de Marco, 46, who has at least six busloads of people from various Philadelphia neighborhoods heading to the U.N. on Wednesday, the opening of a three-day session on HIV/AIDS that will finalize international commitments for the next five years.

Paul Davis is coming in from Kenya, Julie Davids from Rhode Island, and other activists who honed their chops in Philly from wherever they are now.

Waheedah Shabazz-El will be with the U.S. delegation. After serving six months on a drug charge in 2003, she took a course, called Project TEACH Outside, designed to help former inmates with HIV learn to manage their disease and assert themselves in a complex health-care system.

She started going to ACTUP meetings. "It took me months to even be able to raise my hand and be part of the conversation," she said.

One member gave her his old computer. Another helped her write a speech.

Last summer, she delivered the closing address to more than 10,000 people at the International AIDS Conference in Vienna. It focused on women and human rights - the right to be protected from HIV.

"This fight is not over - it is just beginning," she said. "We will hold each other and our elected leaders to their obligations and their promises to fight HIV and AIDS around the world.

"Human rights here - right now!"

For more on 30 years of AIDS, including a global timeline and an interactive map of persons living with an HIV diagnosis in the U.S., go to www.philly.com/aidsanniversary.

Join Jane Shull, executive director of Philadelphia FIGHT, for a chat about the city's history of AIDS at 11 a.m. Monday at www.philly.com.EndText