South African HIVers counter doomsday images with profiles in radical courage. Gregg Bordowitz reports.
After the International AIDS Conference in Durban last July, a group of PWAs from the United States sat down with our South African counterparts at a casual dinner party just outside of Cape Town. It was a chilly night, but we were in the warm home of Zackie Achmat, a 38-year-old HIV positive gay former anti-apartheid activist. Our host also chairs the Treatment Action Campaign (TAC), the three-year-old AIDS organization that seized the world stage with a massive preconference protest march.
Achmat served delicious lamb and squash, and during the hours of boisterous conversation, we emptied several bottles of wine. At one point, we lapsed into silence, and Achmat seized the moment. He asked each of us Americans to pull out our HIV meds and show them to the assembled guests. A bit stunned, we reached into our pockets and laid our dozens of pills on the table. Bashfully, each of us explained the meds, their benefits and side effects. Achmat's gesture was brilliant, demonstrating the gross inequity among the PWAs in the room. Without polarizing his guests, he provoked a profound realization in the Americans: Our South African dinner companions weren't angry at us -- they simply want meds, too.
With just a few paid staffers but a large base of volunteers, TAC won its first victory on this front last November: The Medical Control Council (MCC), South Africa's drug regulators, granted a first-ever waiver allowing importation of a generic medication for the country's 4 million people with HIV. To accomplish this in a climate in which the government is ambivalent about acknowledging AIDS at all took international activist pressure. But it couldn't have happened without TAC's remarkable squad of HIV positive South Africans.
The November success came after a nine-month campaign that included, at one point, the threat of U.S. sanctions and, at another, an offer by five pharmaceuticals to temporarily cut drug prices for southern Africa by 85 percent. TAC welcomed the discounts but condemned any effort to keep the government from promoting importation or manufacture of even cheaper generic substitutes.
AIDS drugs are not prohibitively expensive to make. Manufacturers in India, Thailand and Brazil have shown that most critical drugs, even antiretrovirals, can be produced at a cost that puts them within reach of the resource-poor world. Still patent-holders inflate prices to deliver profits, and international trade laws block large-scale attempts to make and market the drugs at affordable prices. The World Trade Organization does allow countries facing a health emergency to authorize generic production of patented drugs. But there's no enforcement: Countries that take this step still risk trade sanctions by powerful nations and well-funded lawsuits from international corporations.
Toward the end of the Durban conference, TAC called a press conference to announce its Defiance Campaign Against Patent Abuse and AIDS Profiteering: Starting with fluconazole, TAC would seek to make HIV and opportunistic infection (OI) meds accessible to all HIV positive South Africans. Diflucan, Pfizer's patented fluconazole (used to treat thrush as well as a common and deadly OI, cryptococcal meningitis), retails for around $7 per pill; the South African government had been buying bulk from Pfizer for $4. Meanwhile, generic manufacturers in Thailand and India sell the drug for as low as 29 cents (see "Geography Lessons," POZ, April 2001).
Achmat announced that TAC would take legal action to seek a compulsory license, which would allow South African generic production. He also held up a box of fluconazole and declared that TAC would break the law by importing a generic. Ingeniously, TAC had already set up a distribution network for the contraband drug, through doctors and nurses who had agreed to support the campaign. "As a doctor I have an ethical responsibility to my patients," Leon Geffen, MD, told a local paper, "not to Pfizer or any other pharmaceutical."
Two months later, in mid-October, TAC activists did as promised: They defied South African patent law and imported 5,000 capsules of Biozole, the Thai version of fluconazole, and submitted a sample to the MCC for safety approval. At a press conference, Achmat was defiant: "TAC will stop breaking unjust trade laws once Pfizer has lowered the price to under 4 Rand [50 cents] and its 'donation' is implemented with no restrictions." (In March 2000, Pfizer had offered to donate some Diflucan but set conditions so restrictive the offer has yet to be implemented.) The MCC responded by charging Achmat with illegal importation of drugs.
On October 20, flanked by political and religious leaders, Zackie Achmat surrendered himself to police in Cape Town. "Comrades," he said, "it is a very sad moment when we know medications can save our lives, but we have to break the law to get access to them." The activist who had been beaten by the police in the late '70s while incarcerated for his anti-apartheid efforts was again facing interrogation by white police officers. This time, Achmat says, the officers were polite. One even offered words of support. But while policing may have changed since the anti-apartheid movement, Achmat says that the lessons of that long struggle against racism must now be applied to AIDS. In particular, he mentions the value of winning real victories rather than simply making noise. By succeeding with fluconazole, he says, the group has something to build upon.
Achmat says another lesson of the anti-apartheid movement is the need to build a strong political culture -- one that supports and protects people with HIV. Only last August, a young teacher, Mpho Motloung, 25, of Soweto was killed by her husband in a murder-suicide. On her body was a note with the words HIV Positive AIDS. Struggling to understand the crime, Achmat sent an e-mail to international supporters blaming the South African government. He wrote: "Everywhere we go, we hear: 'HIV/AIDS is a death sentence' or, worse, 'There is no cure: Education and prevention is the only protection.' From these primitive messages, people learn fear, hopelessness, loneliness and anger....Government messages fail to tell the millions of people with HIV that it is possible to live fully and productively for many years."
To combat this despair with hope and solidarity, TAC has cultivated a new generation of HIV positive activists, such as Promise Mthembu, 26. "Being open and public about my HIV status is helping me to take out all of my frustrations and anger," she says. "I feel that I'm helping other people with HIV who cannot speak out." Mthembu, a former HIV counselor, quickly emerged as a TAC leader and now coordinates the group's Kwazulu-Natal office and serves on TAC's executive committee. But her treatment options are typical of all but South Africa's wealthiest: a handful of antibiotics and other OI meds, but no antiretrovirals at all. Although testing facilities are available, Mthembu stopped getting her CD4 counts because, she says, they always drop. "I don't see the need for me to go for testing because the numbers are not going to improve anyway." Mthembu has never had her 9-year-old daughter tested for HIV. Without access to treatments, Mthembu says, knowing her child's HIV status would be intolerable.
While approximately 5,000 HIV positive babies are born in South Africa each month, a government pilot program, which makes nevirapine available to lower the risk of mother-to-child transmission, covers a mere 5 percent of pregnant women. Mthembu coordinates another of TAC's fights: to force the government to make these meds universally available to positive mothers-to-be.
At the National AIDS Treatment Advocates Forum in Dallas last November, Achmat and Mthembu each spoke at the opening plenary, calling on PWAs in the U.S. to support the Defiance Campaign by pushing U.S.-based pharmaceuticals to donate AIDS drugs to poor nations and pressuring our government to ease trade restrictions that prevent generic importing (even more urgent with a Bush presidency). After Mthembu spoke, advocates from around the U.S. took her aside to persuade her to take care of her own health while she fights for treatment access for others. Mthembu decided to get her CD4 count upon returning home, and then to pursue getting Bactrim (a pneumonia prophylaxis the government has pledged to provide) and whatever else is easily available to her in South Africa. After that, she says, she'll consider seeking help from people in the U.S. to obtain whatever additional drugs she may need.
Supporters have offered to purchase HAART meds for Achmat outright, but he's publically declared that he will not take any drugs unless they are available to everyone in South Africa. Since his government does provide a handful of medications to treat opportunistic infections, Achmat will, if necessary, take these meds. But he told me, "I have decided not to take antiretrovirals because I don't want to live in a world that devalues the lives of poor people simply because they are poor. I could never look those people in the eye, and I couldn't lead them, if I was taking my medicines while they were going to die."
Achmat's pledge, in the courageous tradition of Ghandi's hunger strikes and Nelson Mandela's refusal to renounce armed struggle to get out of prison, is a display of the kind of leadership that could turn around the AIDS epidemic. In three short years, TAC has not only pushed the South African government to expand HIV drug access, it has helped establish an activist network among poor nations producing, procuring and distributing quality medicines despite trade restrictions and pharmaceutical industry pressure.
With each bit of progress comes resistance. In January, South African TV star Morne Visser arrived at Cape Town International Airport with a now legal shipment of Thai fluconazole. As he entered the arrivals hall, Visser was lifted into the air by more than 100 delighted TAC supporters. Then, in early March, oral arguments began in the Pretoria High Court as some 40 pharmaceutical firms sued the South African government over a 1997 law allowing importation or production of generic drugs.
For now, Achmat remains relatively healthy, and for that he credits his involvement with TAC: "It's the activism that pushed my CD4 counts up. It's the fact that I have so many more friends now -- people with and without HIV -- because they realize that we are doing something together and we can win. Not because of the stand I've taken, but because TAC is giving them hope."
For more TAC info, go to www.tac.org.za. Send donations to: South Africa Development Fund, 555 Amory St., Boston, MA 02130, 617.522.5511; make checks out to SADF and earmark the funds for TAC.