By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
DURBAN, SOUTH AFRICAEsther Guzha's dilemma springs from being one of the lucky ones. Two years ago, AIDS almost killed this Zimbabwean woman, wasting her down to a skeletal 80 pounds and leaving her prey to fungal infection of the brain. She was saved by medication that she could never afford but which she gets from the African AIDS Network, a small organization in San Francisco founded by Lee Wildes, a white gay man who sports tattoos and a silver thumb ring. Like Guzha, he has HIV and knows the grief of the plague. "By the time I was 27," says Wildes, a nurse who has worked in AIDS hospices, "I had been at the deathbed of 100 men." By collecting drugs that would otherwise be thrown out, Wildes's four-year-old program now supports 85 African patients.
Guzha works as an AIDS counselor at the Centre, a Zimbabwean organization that serves 2000 people with HIV. When they get sick, doctors frequently write prescriptions for medicine priced out of their reach, so they come to Guzha for advice. That's when her luck becomes excruciating. "I have the drug at home that could help this person," she explains, "but if I give it to him, then what would I do?"
Guzha's dilemma dominated the huge XIII International AIDS Conference held last week in Durban, South Africa. Past world AIDS conferences have been defined by scientific news, such as the success or failure of new drugs. While such findings certainly emerged at this meeting, attended by more than 12,400 delegates from around the world, speaker after speaker rose to decry what South African judge Edwin Cameron called "the shocking, monstrous, and intolerable" fact that more than 90 percent of the world's people with HIV cannot afford the drugs that have driven down AIDS death rates in rich nations.
Cameron, who just finished a term on South Africa's equivalent of the U.S. Supreme Court, is openly HIV-positive and is taking a drug cocktail that has restored his health. "My presence here embodies the injustices of AIDS in Africa," Cameron told a rapt plenary audience, which gave him a standing ovation. "I am here because I can afford to pay for life itself." He concluded, "Those of us who live affluent lives, well attended with medical care and treatment, should not ask how Germans or white South Africans could tolerate living in proximity to moral evil. We do so ourselves today, in proximity to the impending illness and death of many millions of people with AIDS."
As the statistics continue to swellmore than 10 percent of adults in 16 sub-Saharan nations are infected, and more than 12 million children have been orphanedthe clamor for treatment has become too loud to ignore. And so this conference marked a sharp shift. Before, developing countries rarely emphasized treating AIDS patients, preferring to focus on the much cheaper task of preventing new infections. But now, says Sophia Mukasa-Monicao, head of the AIDS Support Organization of Uganda, "They want the drugs."
The resolve among conference delegates to help them get the drugs was extraordinary. Even South African president Thabo Mbeki's much derided opening speech galvanized delegates. True, Mbeki missed a golden opportunity to lead his nation and continent into action and instead prolonged the pointless debate over whether HIV causes AIDS. But his very lack of leadership drove home the fact that AIDS workers will have to lead from the grass roots, just as they did in the United States under Ronald Reagan, who did not publicly mention the word AIDS until years into the epidemic.
South Africa's director general for health, Ayanda Ntsaluba, acknowledged the importance of activist pressure. "There is always a natural tendency in government to be complacent," he said, "especially in a situation like ours, where we have such a big majority." The African National Congress controls about two-thirds of South Africa's parliament, and many other developing nations are also dominated by a single party.
But it turned out that ordinary AIDS workers had a powerful ally, Nelson Mandela. "Let us not equivocate," Mandela stated at the conference's closing ceremony. "AIDS today in Africa is claiming more lives than the sum total of all wars, famines, and floods, and the ravages of such deadly diseases as malaria." He called, diplomatically yet firmly, for an end to the "distracting" debate and for getting on with "what works." Mandela's speech, said the conference's scientific chair, Salim Abdool Karim, expressed "the leadership and political will I have been yearning for in this epidemic. I was moved to tears."
Two years ago, the world AIDS conference in Geneva was also filled with rhetoric lamenting the gap between rich and poor. But this year's conference was marked by unprecedented global action that ranged from the small efforts of people like Wildes to new initiatives launched by governments and pharmaceutical companies. For example:
Even collectively, these initiatives do not come close to providing worldwide access to care. The United Nations AIDS program, UNAIDS, estimates that Africa alone requires $3 billion a year just to conduct prevention programs and provide basic care, such as antibiotics. On the eve of the conference, UNAIDS director Peter Piot said that less than a tenth of that amount"peanuts"was actually being spent.
What's more, any new commitment will have to last for the long haul, because "we are still not at the midpoint of this epidemic," researcher Roy Anderson declared in a major scientific address. In contrast to viruses such as influenza, which spreads rapidly through populations, HIV spreads slowly. So, Anderson said, the pandemic "must be measured in decades."
As the virus spreads, it also mutates and evolves. Through a process called recombination, different strains of HIV, called subtypes, can shuffle their genes to form new, hybrid strains. Francine McCutchan, an expert on HIV's diversity, revealed that a new variant has been found that mixes five separate subtypes of HIV. This mosaic virus was first found in Senegal, but it has also infected an American soldier who apparently contracted it in Germanyproof, said McCutchan, of "how foreign travel can bring in new strains and expand the repertoire" of HIV.
Still, by the end of the conference, an energized Piot declared that Durban had marked "a turning point" largely because of the spirit of the participants and the flurry of new initiatives. Two of those initiativesone aimed at driving down the price of medicine, the other a grassroots effort designed to keep AIDS activists alive and fightingepitomize the actions taken at the conference. They also reveal the daunting task of bringing treatment to the third world.
Brazil has been the pioneer. Pushed by a robust activist movement and fortunate to have less than 1 percent of adults infected with HIV, Brazil has committed to providing anti-AIDS drugs, called anti-retrovirals, for all who need them. In practice, many of the country's HIV-infected people do not get the drugs, but nevertheless, Brazil's HIV death rate has been cut in half since the program began four years ago, and hospital admissions for AIDS patients have fallen by 80 percent.
What happened to the price of the drugs is equally striking. Even though Brazil is wealthy compared to many sub-Saharan nations, the cost of the medications was nearly back-breaking. So Brazil started making generic versions of several HIV drugs in its own government laboratories. For those drugs with no competition from government-produced generics, the price over the last four years edged down by less than 10 percent. But for drugs that the government makes, the price tumbled by more than 70 percent.
Competition appears to get better results than negotiation. For example, UNAIDS bargained with the major pharmaceutical companies and received special discount prices for a pilot program in Uganda. But Brazil's generics cost less. For example, one day's supply of the anti-HIV drug stavudine, made by Bristol-Myers Squibb, costs $6.20 in Uganda, almost three dollars off the U.S. price. But in Brazil, where the drug is made by the government, the same dose costs just 56 cents. No wonder Ugandan doctor Peter Mugyenyi, whose clinic is the main site for the UNAIDS program, is fed up with what he calls "this nice-boy negotiating."
Paulo Teixeira, director of Brazil's national AIDS program, came to Durban bearing a message from his government. "We are not able to be the drug supplier for Africa," Teixeira explained, but Brazil has offered to share everything it has learned, from negotiating for lower prices to setting up pharmaceutical assembly lines. "We're keen on this partnership," says Ntsaluba, the South African director general of health, adding that a team from his country will be heading to Brazil "very soon."
South Africa cannot adopt Brazil's model tomorrow. For one thing, it has about eight times as many people with HIV4.2 millionwhich would require drug manufacturing on an enormous scale. For another, Brazil was able to make generics legally because it had not yet entered into a World Trade Organization agreement that restricts making knockoffs of patented goods. "It might seem heroic to produce generic drugs," says South Africa's Ntsaluba, "but if the rest of the world put us on trade sanctions, then everyone in South Africa would suffer."
But both South Africa and Brazil, which recently signed the WTO agreement, are considering exploiting a loophole that allows for generic production in the case of national emergencies. Teixeira says his government is currently negotiating the price of two drugs and will go ahead and produce them "if we don't get good terms on the original products." This is the real power of generic manufacturing: It is the trump card in what Teixeira calls "an international movement to push the price of medicine down." Already, India and Thailand manufacture generic AIDS drugs.
That threat, as well as the sheer humanitarian urgency, is pressing drug companies toward "differential pricing"charging high amounts in the first world in order to recoup the research and development costs, while charging low prices in developing nations. Carl-Heinz Pommer, an executive with Boehringher Ingelheim, told the Voice, "There is a real feeling that differential pricing is the way to go." The strongest move in that direction has come from Glaxo Wellcome, which has offered to chop off 80 percent of the American price for one of the mainstays of AIDS treatment, a pill called Combivir.
But when Glaxo announced that price cut in May, Jeffrey Sturchio of rival company Merck remembers that "Congressman Jim McDermott was on CNN, rattling his saber and saying, 'If you can lower prices over there, why not right here in the U.S.?' " Such pressure, which threatens the very heart of the pharmaceutical market, scares the drug companies.
Of course, Western activist groups, such as ACT UP, frequently push for lower drug prices in America and Europe. "With friends like these," quips Bernard Hirschel, the scientist who chaired the previous world AIDS conference in Geneva, "developing countries don't need enemies." For global access to medicine, he says, the new deal is simple: Rich countries must "pay more so that others may pay less."
If the industrialized nations accept differential pricing, Joseph Perriens of UNAIDS says, the cost of the AIDS cocktail could tumble from its current discount price of $7000 a year to $2000. What's more, a new and cheap test would allow doctors to monitor the effect of the drugs on the immune system much more easily. He predicts that the combination of such advances and price cuts will allow AIDS treatments to spread from big hospitals in capital cities out "to the district level." He says, "I thought for a long time that antiretrovirals for developing countries would not be possible. But now I think there really is something in it."
AIDS counselor Jesús Agüais remembers the woman who somehow found her way from Latin America into his office in New York City. "She had sold all her property to come to the U.S., and what she wanted was medicine for her son and daughter, who were dying from AIDS. I had some drugs in my drawer, and when I put them in her hand it was as if she had seen God. Right then I knew I had to do it on a larger scale."
Agüais, who calls ACT UP "my kindergarten," founded an organization called Aid for AIDS. Like Lee Wildes's group in San Francisco, it sends drugs to people with HIV in poor countries. Now, many such programs have joined under the umbrella of the newly formed AIDS Empowerment and Treatment International. It has a clear goal: to keep AIDS activists alive. "If they don't stay alive," says Agüais, "who will make the changes?"
One activist sustained by drugs from Agüais is Jose Fernando Sanchez Romero. Working in the Peruvian port city of El Callao, which has the highest rate of HIV in that South American country, Romero runs a support group for infected sex workers and another for HIV-positive mothers. He has also convinced two banks to fund all school expenses, from books to uniforms, for children with HIV.
But those programs might never have been born. Three years ago, Romero had tuberculosis, pneumocystis pneumonia, and a fungal infection called thrush in his mouth and esophagus. This combination of diseases signals end-stage AIDS; without treatment patients usually die quickly. But on the Internet, Romero found Aid for AIDS, and his latest project has been to help launch Peru's first national network of people with HIV.
Such groups are crucial, because for the most part, governments in developing countries have not done nearly enough to fight AIDS. Many countries impose tariffs on medicine, adding to their cost. Most countries, even the hardest hit, devote only a tiny sliver of their budget to AIDSalmost never more than one percent. Yet medical infrastructure, from trained staff to basic laboratory equipment, is often lacking. "We need more beds," says Kenyan doctor Christopher Ouma, who works with the Nobel Prize-winning group Médecins Sans Frontières. He says that patients sleep two or even three to a bed in his Nairobi hospital, and that drug shortages are common. "If my patients were able to get food, that would be a major improvement."
At the moment, though, the lion's share of attention is on the most expensive drugs, the antiretrovirals that attack HIV directly. But most Africans survive on less than two dollars a day, and they lack even basic care. For example, an antibiotic called cotrimoxazole prevents a variety of diseases, including pneumonia and malaria, and last year UNAIDS recommended its use in developing countries. But even though the drug is cheap, only a handful of poor people get it. Meanwhile, in Uganda, researchers are about to test an even more basic way to prevent opportunistic infections: providing chlorine tablets and special jugs to ensure clean water.
But before such tangible changes can be made, there needs to be a change in the mind. "We prefer not to tell patients the drugs exist," says Ouma, because doing so would be a "cruel joke." Even Guzha, who is taking the drugs Wildes sends her, agonizes over whether to tell her clients about antiretrovirals. "They start thinking they can't get better without them," she says, "and so they lose hope and don't do the things they could do."
That's "paternalism in the worst sense," charges Zackie Achmat, a founder of South Africa's Treatment Action Campaign. "You know something and you're taking out of that person's hands their own despair or hope." Learning the facts, he says, might stir "outrage and action."
There is no harder way to learn anything than the way Sabina Khoza from South Africa found out she was infected. Her baby boy had diarrhea and TB, so the doctors tested him for HIV. He died a week later, the very day his test came back positive.
Her son's infection meant she also had the virus, but "I didn't tell anyone about the disease, not even my boyfriend," she says. When she finally told her mother, word spread and her brothers kicked her out. "They said I must take my clothes and go, because I might infect them," she recalls.
That was five years ago. Last week, Khoza was not only at the conference, she marched in the demonstration for drug access, wearing one of the T-shirts emblazoned with the block letters HIV-POSITIVE. What transformed her was meeting other infected people, who taught her that there is treatment. She takes vitamins, an herbal immune booster, and has managed to get into a clinical trial for antiretrovirals.
In her township, near the South African capital, Pretoria, 20 women have formed a support group. "Most are sick," Khosa says. "Some are full-blown sick. They must give us medicine!"*