Talk to the founding members of ACT-UP, the ones who survived the first wave of AIDS deaths in the 1980s and lived long enough to be able to undergo cocktail therapy treatments, and they like to tell you about guilt.
"I feel a great degree of survivor guilt that I am able to live for 20 years with HIV when my brothers and sisters around the world are dying because they don't have my privilege of wealth and access to these drugs," said Eric Sawyer, the 47-year-old co-founder of ACT-UP New York. It compels me to spend every hour I can fighting for their right to access essential medicines."
The fight for access to life-prolonging drugs has led to a remarkable transformation in the public tactics of ACT-UP. Twelve years ago, ACT-UP made global headlines with over-the-top and occasionally violent protests against the government and religious leaders for their slow and sometimes homophobic response to the AIDS epidemic. In the 1990s, many of the organization's early leaders died -- literally. Then came promising new treatments and a focus on lowering drug prices -- a less dramatic story. The group slipped into a state of semi-obscurity until the battle in South Africa began, in 1998, over the manufacture of generic drugs and importation of less expensive brand-name drugs from other countries.
Today, ACT-UP -- primarily led by its Philadelphia and New York chapters -- is aligning itself with other organizations, like churches, Third World debt relief groups, labor and other groups combating AIDS in developing nations.
The group debuted its new face to an international audience Saturday at a protest on the eve of the United Nations' General Assembly Special Session on HIV/AIDS, the first-ever meeting of the global organization dedicated to any disease. The session convenes officially Monday at the U.N. headquarters in Manhattan.
Though the U.N.'s decision to hold the unprecedented session is a symbol of how far governments have come in acknowledging the spread of the disease, ACT-UP and other AIDS activists are concerned that the proposals and pledges coming out of the countries and organizations involved in the closed-door negotiations will focus almost entirely on prevention, with no plans for treatment of the 36 million people around the world who are currently HIV positive. U.N. member nations have been negotiating over the language of a resolution on AIDS for several weeks now. It's a debate that has pitted industrialized nations against developing nations -- some of which want to produce inexpensive generic versions of HIV cocktail drugs to treat those who are ill. It has also created a divide between socially liberal countries in places like Northern Europe and socially conservative nations, such as some Islamic ones, in which discussions of homosexuality, sexual activity or drug use are still verboten.
By the end of the session Wednesday, a formal plan will be unveiled for a $7 billion to $10 billion fund devised by U.N. Secretary-General Kofi Annan and professors at Harvard University. U.S. officials have stated that they will invest little, if any, money in treatment and will instead focus on prevention programs to help stop the spread of the disease. AIDS activists, however, say that treatment is just as crucial in halting the disease as prevention. They describe letting people die of the disease untreated as the result of a sort of genocidal apathy of world leaders and government.
The protest was endorsed by Sen. Jesse Helms' new best friend, Bono Vox of U2, and rock band Radiohead -- both of whom advertised the event on their Web pages. Bono, a leader in the debt relief movement, visited Washington in early June to meet with U.S. officials and the president of the World Bank. He asked them to forgive the debt of certain developing nations to free up money for HIV/AIDS treatment. And that was the message they brought to New York in the "Stop Global AIDS Rally" Saturday.
Hundreds of people, including 500 HIV-positive men and women bused in from Philadelphia, gathered on a torrentially rainy and humid day in Washington Square before departing on an hourlong march down the Avenue of the Americas to Bryant Park. They filled one lane of the broad avenue for blocks, flanked on each side by NYPD officers. Showing that there's still at least an ounce of camp and irony in ACT-UP, some marchers chanted: "We're here, we're wet, it's time to drop the debt." To which one marcher joked, "I feel a little dirty when I say that."
They carried signs driving home the day's message of taking President Bush and other politicians to task for their recent AIDS policies: "Trillions for tax cuts, death for people with AIDS." "Bush: Killing time is killing people." "Death by patents, drugs for Africa." "Bush AIDS policy: Coffins for kids, not condoms."
It is a radical transformation for an organization founded in 1987 that garnered international attention for its theatrical and sometimes violent protests, among them the disruption of a service by John Cardinal O'Connor at St. Patrick's Cathedral in 1989 and a confrontation with the government at the National Institutes of Health in Washington in 1990. In its dramatic "Day of Desperation" protest in 1991, 2,000 ACT-UP members delivered coffins to local, state and federal offices in New York. In the late '80s and early '90s, it seemed that everywhere ACT-UP went, violent clashes with police and arrests followed. Though Saturday's march was peaceful, some of the heated rhetoric evoked the organization's earlier days.
"I am mad as hell that drug company greed kills 10,000 people every day because AIDS drugs cost too much," Sawyer said at a rally preceding the march. "I am mad as hell that 16,000 people get HIV every day because our world leaders are heartless cowards who can't admit that people have sex" -- to which the audience chanted, "Shame! Shame! Shame!" "I am mad as hell that white people in the First World value money more than the lives of people of color around the world. I am mad as hell that 20 years into this epidemic some people still think treatment and prevention are separate and that prevention is more important than treatment. We are here to say that treatment and prevention are inseparable -- one can't work without the other."
The message of the coalition of ACT-UP, HealthGAP and Jubilee USA Network and others was simple: Donate the dollars, drop the debt, treat the people, save the lives.
The coalition criticized the $200 million U.S. contribution to the global AIDS fund, arguing that it's too little to make a significant dent in the problem and noting that it is a mere fraction of the $2 billion-plus Annan has requested from the U.S. government and industry. (So far, the only American organizations besides the government that have stepped forward to pledge funds are the Gates Foundation, which is providing $100 million, and Coca-Cola, which says it will use its massive distribution network in Africa to assist the U.N. with its prevention programs.) Activists also demanded that anti-retroviral cocktail treatments be provided to the tens of millions who are already sick with AIDS, and that industrialized nations, the World Bank and the International Monetary Fund immediately forgive debt to the hardest-hit countries so they can instead use their annual debt repayments to purchase the lifesaving drugs.
"We're here to tell the do-nothing governments and the do-nothing governmental leaders at the U.N. that if they don't know how to fight AIDS, they should get out of the way and let people with AIDS tell them how to fight AIDS," Sawyer continued, eliciting catcalls and whistles. "People with AIDS know how to fight AIDS, and it all boils down to simple things: dollars, debt cancellation, treatment and saving lives." He went on to describe the America's $200 million contribution to the fund as an insult, as "chump change."
No paper dummies were burned in effigy Saturday, but there were two boogeymen who were the focus of most of the scorn and derision: Andrew Natsios, administrator of the U.S. Agency for International Development, which oversees U.S. contributions to the AIDS fund, and President Bush, who activists say is not doing enough to battle the AIDS epidemic.
Natsios enraged AIDS activists earlier this month when he told the Boston Globe that U.S. contributions to the global AIDS fund should not be used to treat those who are HIV positive because of a lack of healthcare infrastructure and because Africans "don't know what Western time is," implying they would not be able to follow the precision today's regimens of cocktail drugs dosages require. Of the proposed widespread anti-retroviral treatments, he said: "We cannot get it done because of conflicts, because of lack of infrastructure, lack of doctors, lack of hospitals, lack of clinics, lack of electricity."
At Saturday's rally, I cornered Sheila Kibuka, executive director of Hope Africa in Nairobi, Kenya. "These infrastructure arguments are absurd," she told me. "We don't have time for these myths anymore. The people are dying. We've had healthcare infrastructure in Africa for 100 years. We have clinics, hospitals, schools and churches. Many people have access to this infrastructure, and you have to make the drugs available to them. You have to start somewhere."
Former Manhattan borough president Ruth Messinger, who now heads the American Jewish World Service, also took Natsios to task. "We are citizens of a country whose top officials have explained their refusal to make drugs available with the unbelievably insulting remark that Africans lack the requisite sense of time," Messinger said. "Let's be as clear as we can. The people who lack the requisite sense of time are the leaders of our government who are turning their backs on people who are dying, who are refusing to step forward and save lives. We demand that our government, that the United Nations and the G7 nations, that the World Bank and the IMF cancel the debt, that they create the global AIDS fund that Kofi Annan has asked for, that the dollars be used to make drugs available to provide treatment, to build a health infrastructure, to support grass-roots groups that are making a difference every day in people's lives."
Mara Vanderslice of Jubilee USA hammered home the debt cancellation message, pointing out that African nations pay $13.5 billion in debt service each year -- $3.5 billion more than what Annan is calling for in contributions to the AIDS fund. "You want to ask where we're going to get the money to fight AIDS? We're going to get it from canceling the debt. The United States government has given a paltry $200 million to the AIDS fund, yet Africa pays back $200 million in one week of debt service. This is money we need to stop taking. It is unconscionable to take money that could be used for prevention on the ground, treatment and lifesaving drugs, clean water and clean healthcare," she said.
ACT-UP first began to focus on the epidemic in sub-Saharan Africa and other regions in the late '90s, when intellectual property disputes over AIDS-related drugs first came into serious public play. Jamie Love of the Ralph Nader-funded Consumer Project on Technology, who has been a behind-the-scenes player throughout the international AIDS crisis, went to the group in 1998 and alerted it about then-presumed presidential candidate Al Gore's role in tightening the screws on the South African government. In a Feb. 17, 1999, meeting with South African President Thabo Mbeki, Gore told him, "I'm concerned that, without significant progress toward a resolution, a single trade issue could overshadow our bilateral relationship." He was referring to South African legislation that would make it easier to distribute inexpensive drugs in the AIDS-ravaged country. The legislation was unpopular with the American pharmaceutical industry, a deep-pocketed friend of Washington politicians and lobbyists. And there was growing pressure in Congress and the White House for trade sanctions against South Africa.
ACT-UP took on the veep, initiating "Gore zaps" at his campaign appearances from the day he announced his candidacy for president in Carthage, Tenn. In one of the best examples of the newly reinvigorated ACT-UP, an activist unfurled a banner just feet behind Gore onstage during a nationally televised prime-time town hall meeting in New Hampshire, chanting "Gore's greed kills." In the end, then President Clinton issued an executive order pledging not to impose trade sanctions against South Africa or other African nations related to pharmaceutical disputes as long as they adhered to the requirements set forth for intellectual property protection by the World Trade Organization. Under the TRIPS provision of the WTO, countries can issue compulsory licenses for the generic production of drugs if they declare a national health emergency.
But Gore wasn't the only subject of ACT-UP's zaps. Mark Milano, a 45-year-old HIV-positive ACT-UP member since 1989, said he crashed a $500-a-plate George W. Bush fundraiser outside Philadelphia, where he unfurled a poster he had hidden in his T-shirt and screamed: "Bush is a drug company puppet." The Secret Service escorted Milano out of the dining room to question him, but ultimately let him go. ACT-UP also stormed the offices of President Clinton's U.S. trade representative, Charlene Barshefsky, when she pressured developing nations to strengthen patent protections for pharmaceutical companies.
According to Love, the Gore zaps staged by ACT-UP were crucial in drawing media, and thus public, attention to the AIDS crisis in Africa and how intellectual property protections and drug patents are keeping essential medicines out of the hands of millions who are infected with HIV or dying of AIDS.
Though the primary focus of ACT-UP became international only during the last presidential campaign, it has always been a part of the global movement. "ACT-UP started the Global Aids Action Committee in 1990, 11 years ago," said co-founder Sawyer. "We started doing demonstrations at the U.N. on World AIDS Day to call for access to AZT and Bactrum for pneumonia. We've done major demonstrations at every international AIDS conference and many regional conferences and a lot of press and advocacy work on global AIDS issues ever since. It became the primary focus when people here started living longer and [having] a better quality of life because of protease inhibitors and when we finally got the world's attention to the extent of the global AIDS crisis during the Gore campaign."
Nonetheless, the Philadelphia chapter has continued its involvement with local AIDS initiatives. It works with intravenous-drug users, prisoners and other groups at high risk for infection. "Our idea has always been to follow the epidemic wherever it goes," said Katie Krause, a longtime ACT-UP activist in Philadelphia and San Francisco. " If AIDS were decimating Alaskans, that's where we would be. But if we need to talk to the U.S. trade representative or the Brazilian health minister, we're there too," Krause said.
Different places, Krause said, require different approaches. "AIDS is demolishing a number of African and Asian countries. And if our aim is to support people with AIDS in those countries, and they tell us they need treatment, then we try to get access to top U.S. officials. But when we're trying to get more AIDS drugs for low-income people in Philadelphia, we need to talk to the health commissioner and local drug companies. The goals are always the same; we just use different tools to get there." The Philadelphia chapter is also well-known for its laborlike ability to bus in hundreds of activists to protests on the East Coast.
Krause doesn't make much of ACT-UP's transformation to an international organization. She says much of the inspiration comes from AIDS activists who attended conferences in Paris, Geneva or Durbin, South Africa, where one might sit next to someone who is dying because they don't have access to AIDS drugs. "Could you please give me a Bactrum or something I can bring back to my clinic?" he might ask. "That's a searing experience for any person with feeling. It's not much of a jump from caring about your local community which is being ravaged by AIDS to caring about a neighboring community."
In Philadelphia, where the ACT-UP membership is extraordinarily diverse, Krause says there is tremendous sympathy for the suffering of sub-Saharan Africans. "We have hundreds of African-Americans participating from Philly who have very strong empathy for people with AIDS in Africa, who are also personally connected."
I talked to one of those women during the march. Donna, who would not reveal her last name or age, rode a Trailways bus from Baltimore to participate in the protest. Donna has been trying to kick her drug habit through Philadelphia's Stop and Surrender program, which encouraged its members to join in the march. "AIDS doesn't just affect gays," said Donna. "It affects everyone -- in Africa and in the United States."
ACT-UP thinks it can make a bigger difference through coalition building with like-minded constituencies. Says Milano of ACT-UP New York: "We haven't given up our direct actions. We will still have demonstrations and are arrested." Of Saturday's fairly subdued march, he said: "Normally, we'd do this without a police permit; we'd be taking arrests. That was 10 years ago, when we had a thousand white gay men doing it. But nowadays it's a coalition building. It's people of color, it's labor leaders, it's religious groups, it's drop-the debt-people. It's a different type of activism."
But in these days of political apathy, when the major industrialized nations have teamed up against proposals to provide treatment for the HIV and AIDS infected in Africa with very little dissent, some must yearn for the outrageous ACT-UP of yore. And there is a hint of frustration and exasperation in some ACT-UP members.
"After the Gore zaps and the South African lawsuit, there was a real momentum toward treatment," says Milano. "We were on the verge of getting treatment to people in Africa. I thought, 'My God, the efforts of a few core activists really may have made a difference.' But, suddenly, everything has switched. Bush is talking about prevention only, no treatment; the dollars are incredibly small. Did you know Pfizer is on the official U.S. committee? It became very clear that the drug companies were calling Bush's shots. We're on the verge of losing all of our momentum now. But we're not going to give up."
The question is how ACT-UP can make the biggest dent. Should it rekindle the outrage and angst that fueled its effective protests of the '80s and '90s, or should it try to achieve strength in numbers by building powerful coalitions? The divided thinking about which way to go is clear from conversations with ACT-UP members, and is an inevitable outcome for a maturing political organization -- which has to create a more mainstream message to access political leaders and not alienate coalition partners.
In a telephone conversation last week, ACT-UP Philadelphia's Krause compared the current international AIDS crisis to the Holocaust. Then she backed away from her comments, saying she felt uncomfortable using the comparison to quantify political goals. But two days later, in New York, the organization distributed a press packet with the following quote from New York ACT-UP member Peter Roberts: "It's like living through World War II and hearing [that] U.S. groups [spoke] out against bombing the trains to Auschwitz but did not attempt to bomb the crematoriums."
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