The Washington Blade - May 19, 2000
Kai Wright

"You aren't there with your husband 24 hours a day," Francis delicately notes to the Seventh-day Adventist who has called for information.

The woman recently tested positive for HIV when she went in to renew an insurance policy. But she is convinced it was a "false positive" because, as a devoutly religious couple, she and her husband have always been faithful to one another.

Francis opened The Centre, an Harare health clinic and community center for people living with HIV and AIDS, in 1991 to challenge this sort of mental roadblock among the estimated one in four adults infected with HIV in Zimbabwe. The root of the problem, she believes, is the perceived lack of options for people once they discover they are positive.

"I must stress to you," Francis tells the woman, "that if you are positive, there is stuff that you can do. I'm positive. I have been for 13 years." Francis pauses, grinning as she listens to the woman's natural next question. "I'm fit as a fiddle," Francis offers in response.

This message is at the core of The Centre's founding ideology. Francis, and an increasing but still few others like her, want to convince the millions of people infected with HIV in southern Africa that they can live with HIV rather than just wait for death. It's a tough sell.

No money, no medicine

Southern Africa is the undisputed center of the AIDS pandemic. The four countries with the highest HIV infection rates globally are here. In each of them -- Botswana, Namibia, Swaziland, and Zimbabwe -- at least one in five adults is estimated to be HIV-positive. The region is also home to the country with the fastest-growing rate of infection, South Africa, where an estimated 1,700 new infections occur every day.

But despite the millions of people living with the virus here, few have access to even the most basic medical treatments. Last year, American advocacy groups began protesting the United States' involvement in a trade dispute with South Africa -- a dispute that has delayed the African country's production of generic AIDS drugs. Since then, a discussion among U.S. policymakers about if and how to facilitate the availability of anti-viral drugs in Africa has intensified. But for individual people with HIV here in southern Africa, and those attempting to serve them, the conversation is about much more basic treatments.

A 53-year-old man living with HIV in Durban, South Africa, who agreed to be interviewed on the condition of anonymity, said he believes he is getting the best treatment available for his condition.

"If and when circumstances permit, I buy medication that is for boosting the immune system and vitamin supplements and stuff like that. I do buy that, and everybody in the house takes it," he assuredly explains in describing the totality of his health care. When asked how he affords the "medication" he refers to, given the high price of any pharmaceuticals, he pauses, confused about the question.

"No," he finally says, realizing there has been a miscommunication, "it's just vitamins and stuff that you get from the store. I don't think -- there's nothing, as far as I know, that has been discovered that's meant only for HIV. I don't know why that is."

Speaking candidly and off the record, U.S. officials will explain that there are no AIDS drugs in southern Africa because there is no market for them. Western pharmaceutical companies simply cannot, or will not, mark the drugs down far enough to make them affordable in a region where per capita gross domestic product is as low as $900 a year in some countries and does not get above $6,800. So the goal, officials say, is to create an "artificial market" by drumming up enough public and private donor money to subsidize the drugs. Private donors have begun responding to that plea by instead funding research projects and vaccine initiatives. The William H. Gates Foundation has been a leader in this respect; it donated $25 million to the International AIDS Vaccine Initiative last spring. It has also reportedly been among the leaders in pushing the idea among philanthropic groups of creating an artificial market for the pharmaceutical companies in the developing world.

Bristol-Myers Squibb Co. has also shown some interest. Last spring, the company donated $100 million over five years for research, physician training, and organizational development for community based AIDS groups. The Bristol-Myers project is the sort White House AIDS czar Sandy Thurman -- probably the nation's loudest advocate for investing in Africa's AIDS fight -- says is most necessary. Its investment in doctors and local community groups helps create a stronger health care infrastructure, not only for the eventual delivery of vaccines or antiviral drugs but, more pressingly, for treatment of opportunistic infections. Research-based efforts have also produced some promising leads towards treatment. Last summer saw an important breakthrough in prevention of mother-to-child transmission of the virus -- a crucial issue here since in some parts of the region, such as southeastern Zimbabwe, researchers are finding that as many as 60 percent of young women coming into antenatal clinics are HIV-positive. The new drug, Nevirapine, is promising not just because it has shown a high success rate in blocking transmission during birth, but also because it could be priced as low as $4 per treatment.

But none of these efforts address the root problem: Basic treatments for AIDS-related illnesses are too expensive. Activists blame pharmaceutical companies for refusing to lower the price of their drugs -- ranging from protease inhibitors to more pedestrian treatments for opportunistic infections. Several studies have found that U.S. pharmaceutical companies, which market the AIDS drugs Africans need, are among the most profitable businesses in U.S. markets every year. According to Fortune Magazine, the pharmaceutical industry was the most profitable industry in America in 1998. And according to an April 1999 study in POZ Magazine, five pharmaceutical companies that manufacture AIDS drugs were among the nation's 12 most profitable corporations in the previous year. In its own study last year, AIDS Action reported that worldwide drug sales reached an all-time high of $251.3 billion in 1998.

Pharmaceutical companies respond to criticism by explaining that their prices are set to compensate for the research necessary to develop new treatments for the world's diseases. Industry spokespeople say that the average cost of developing a new drug is around $500 million -- if the world wants better treatments, they argue, someone has to pay for them. But AIDS Action's study last year charged that the 15 largest pharmaceutical companies in the world spent three times as much money on marketing and administration as on research and development in 1998.

In April, one of several Western companies that have filed suit in South African courts to stop the implementation of a law allowing the government to produce generic versions of their patented drugs broke rank to donate an unspecified supply of its drug to South Africa. New York-based Pfizer announced that it would donate a supply of Diflucan (fluconazole) to the South African government explicitly for treatment of people with AIDS. The drug is used to combat a common and deadly infection in southern Africa, Cryptococcal meningitis, in which the linings of the brain and spinal cord inflame. A typical treatment would cost around $7 a dose, with daily dosages necessary for 10 to 12 weeks. This month, five Western drug companies announced that they would dramatically lower the prices for their AIDS-related drugs in poor nations, some saying they would cut their prices down to as low as 10 percent of what people in the United States pay for the drugs. The five companies -- Bristol-Myers Squibb Co., Glaxo Wellcome PLC, Merck & Co., Boehringer Ingelheim GmbH, and Roche Holding AG -- have not yet offered specifics on what the new prices will be and which countries will benefit from them. But, significantly, Glaxo Wellcome has said that Combivir, a drug that combines AZT and 3TC to form two of the three drugs involved in "triple therapy" treatments, will sell for as low as $2 a day. Still, the price of the triple therapy treatments that have slowed AIDS deaths in the United States will remain prohibitive for the vast majority in Africa. Including the necessary third drug, those treatments will still cost as much as $200 a month. Nevertheless, depending on the other prices finally set by these five companies and Pfizer, many lives could be saved or prolonged by treatments for opportunistic infections.

While AIDS activists around the world celebrated these breaks, many were also quick to point out their relative uselessness. Critics argue that pharmaceutical companies have merely locked onto a new strategy that will cut their losses while allowing them to still reap obscene profits on crucial treatments -- donating one specific drug, for one specific illness, in one specific country in order to deflate growing pressure on them to lower their costs everywhere. Critics also argue that the companies have calculated they are better off giving some drugs away for all but free in poor countries in order to deflate growing demand for generic versions of the drugs. As reported in the Wall Street Journal, generic versions of AZT are already available in Brazil for as low as $1 for a day's supply (compared to around $10 a day in the United States). If poor countries become a profitable market for black-market generic drugs thus far blocked by Western drug companies' patents, the generic producers could ultimately zero in on more lucrative markets in the United States and western Europe as well.

Some African leaders are also reluctant to embrace these sorts of piecemeal advancements, to the dismay of local AIDS activists who want at least some treatments to save lives now. South African President Thabo Mbeki has been under heavy fire from local AIDS activists for his refusal to subsidize short-courses of AZT treatment for pregnant women to prevent transmission during childbirth. Glaxo Wellcome long ago offered to provide the drug to South Africa with a 75 percent rebate off the average world cost. But Mbeki's government has refused, noting that the offer is good for only six years and arguing that the drugs must be available for everybody or nobody. Activists argue that the government is simply stalling to avoid having to divert more substantial amounts of money to fighting and treating AIDS.

Most recently, Mbeki began defending his reluctance by arguing that his researchers have found new side effects to AZT -- a claim that has been roundly dismissed by activists and academics alike. Similarly, Mbeki recently began questioning whether or not Nevirapine is safe as well. Positive living

But as the world's policymakers debate the availability of treatments and vaccines, Francis and others living with HIV in southern Africa go about finding creative alternatives. Francis has had 1,400 clients at The Centre since opening in 1991. Of those, around 200 have died -- far fewer, she says, than anyone would have expected. Only 23 of those clients have taken anti-viral drugs. Most follow a "positive living" program Francis has designed. The idea, as she puts it, is to keep people healthy and, thereby, avoid reaching the stage where expensive drugs are necessary.

Depending on who is talking, her program is either grossly irresponsible or nearly miraculous -- and she is either a saint or a lunatic. The U.S. Agency for International Development and national health department officials in Zimbabwe caution that they have seen no hard numbers or systematic research to confirm how well Francis's "positive living" regimen works. They are uncomfortable with some of her claims, such as that HIV cannot kill people.

There is certainly reason for caution. Many traditional healers -- who play an influential role in most Zimbabweans' patchwork of health care options -- have claimed they can cure AIDS. But Francis does not claim to offer a cure, merely a way of defending against opportunistic infections.

"HIV doesn't want you dead," Francis explains. "If you die, HIV dies, too. So, if it kills you, it's committing suicide. And it doesn't want to commit suicide; it wants to live. It wants to survive, and it can only survive if you survive. So, make an accommodation with your virus. Give it a name; sit it in a chair. Mine's called Fred, and he's a salesman."

Francis advises a four-part strategy, addressing spiritual, social, mental, and physical health. Clients who come to The Centre undergo counseling and participate in support groups, they learn to think about the future as though they will be alive in it, and, most importantly, they learn how to eat.

"It's reverting from the Western diet to a traditional diet," Francis explains. "It has several advantages. One of them is that it's cheaper -- refined foods are more expensive than unrefined foods. Unlike Europe and America, where anything whole or organic is `health food' and, therefore, more expensive, here whole and organic is cheaper. ... So, it's basically unrefined, unprocessed, low-fat, no sugar, no coffee, no red meat, no pork diet -- combined with vitamin supplementation."

The underlying principle is that one should eat nothing that doesn't grow naturally and in season in the place where one is living. Follow this principle, Francis asserts, and serious opportunistic infections are averted in the first place.

For those infections that cannot be avoided, she refers patients to local traditional healers. This is another source of public health officials' unease with Francis. There are more than 30,000 traditional healers, or ngagna, in Zimbabwe. And while most people will publicly disavow them, most will also still consult one in combination with more "modern" doctors. These traditional healers have been accused of helping spread the virus, through rituals and treatments that allow the transmission of infected blood from person to person. And they are faulted with giving people false hope by claiming to have a cure for the infection.

Again, Francis acknowledges the dangers but says she has to work within the options she has. And she does not see the logic in ignoring a large portion of the already overburdened health care system.

"There will be charlatans in any profession," she says, "but the vast majority of traditional healers are genuine. ... I don't think they've been slow in accepting [the virus and its implications for their practice], people have been slow in involving them."

Flora has been coming to The Centre since 1994 and has been a counselor since 1996. She discovered she was HIV-positive in 1992, four years after her husband committed suicide after testing positive. She and her new husband, who is also positive, raise her son and niece, whom they adopted when Flora's sister and brother-in-law died of AIDS-related illnesses. She follows the positive living program, and she is healthy. Most importantly, both she and Francis say, she now has hope for the future. At one point, shortly after testing positive, Flora literally never left the house. She was in what one South African AIDS activist calls a "black spot" of waiting for death.

"There was nothing at all," Flora says, in recalling the time when she discovered her infection. "It was HIV equals to death, and there was no other information. And so I couldn't go anywhere. I waited for my death. For two years, I never went anywhere, including I never saw my doctor. I just stayed at home."

Now she preaches Francis's message of hope. She says the diet and vitamin supplements for her and her family cost her around $50 a month. That is not cheap here, but it is better than the estimated $800 a month any antiviral drug might cost. She says it is easy for her to follow the diet because, before moving to the city, it was what she always ate anyway.

It is people like Flora who Francis hopes the Seventh-day Adventist caller will ultimately meet by coming to The Centre -- to learn, as she says, that "there is stuff that you can do."

Flora says she would love to have access to the expensive antiviral treatments. But, in the end, that is not her main concern. She can go on with the positive living program. What she really needs is a house. As with many rural migrants to Harare, she rents a room in someone else's house. She is worried that, if she does get sick and die, her kids will join the thousands of homeless orphans who wander the streets of downtown Harare.

"What I look for is to teach my children not to get AIDS, and to live in a home which I can call mine," Flora explains. "A small place where you can die and have the knowledge that, yes, you are dead today, but your children won't roam around because they don't have anywhere to sleep. Because most of this HIV is being caused by poverty. People don't have money. You can't afford to buy just 20 meters of land. You can't afford to buy. So what do you do? You live in these congested places where there are these boys, these what. And at the end of the day, your children, they sleep with these boys or they are raped or whatever. ... I don't want to die, but as much as I don't want to die, I want life for my children. I don't want to die; I want to see my great-grandchildren, too. But if the choice was there for me to have a home or drugs, I'd choose a home."

But the choice, for now, is not there. So, as do many in Zimbabwe, she moves on with the necessities of living. And in Zimbabwe, that too often means fighting. Gay men fight to assert their very existence. Lesbians fight to gain a voice both within their own community and in larger society. Both men and women, Gay and straight, fight to deflect the impositions of gender. And people living with HIV and AIDS use whatever resources they have to simply fight for life itself. There is no other choice.
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