No Time to Lose: A Life in Pursuit of Deadly Viruses (34 page)

There was an irresolvable clash of cultures over even mentioning homosexuality in the special session’s closing declaration. Some countries, led by Egypt on behalf of the Organization of Islamic States—and supported by just about all African and Asian members states—stated that they could not agree to include the keywords
men who have sex with men, sex workers, or injecting drug users
in the text, as that would imply an acceptance of behaviors that were and are against the law in their countries. I spent hours debating with them, trying vainly to convince them that stating facts of life and important realities of the AIDS epidemic by no means implies approval. This went beyond my diplomatic skills, and poor Penny and Kathleen had to listen with me for hours to homophobic statements very difficult to tolerate.

Eventually the leaders agreed on the compromise term “vulnerable populations,” a phrase that became code for the three groups that still today cannot be named in UN documents. I have often reflected on why many otherwise reasonable people become so irrationally passionate about sexual orientation. Is it because they are confused about their own sexuality? Hard to believe, but it seems to me this is the crux of it. Certainly the issue of homosexuality nearly derailed the opening of the august session. Even at the last second it wasn’t certain that the Special Session would even begin at its scheduled time in June. UNAIDS had proposed among a few hundred other NGOs that the International Gay and Lesbian Human Rights Commission attend a round-table debate as an observer (not even a formal participant). But many countries objected, and Egypt and a few others threatened to walk out. I felt it was a matter of principle that the people most affected by the epidemic should not be excluded from discussion.

The European Union (then without recent members such as Malta and Poland, which supported Egypt’s position) spoke up in favor of the commission’s inclusion, and eventually Canada insisted on a plenary vote in the UN Assembly, which had never had to pronounce on such a loaded social issue. So the opening of the special session was postponed for an unprecedented vote on the admission as observer of one NGO—in reality, a vote on gay rights. It was very tight: we won by one vote. I am not convinced that the outcome of such a vote would be positive today.

Sadly, no compromise was reached on another crucial issue: access to antiretroviral treatment. Ten years later this is particularly hard to understand. The “Rio” group (Latin American countries led by Chile and Brazil), the Caribbean, France, and Luxemburg proposed a target of providing treatment to the millions of people with HIV who would otherwise die. But these countries were a small minority, and despite eloquent and well-organized efforts by the Rio group, and several sessions until well after midnight (the only limiting factor being that at 2
A.M.
the interpreters went home), the Europeans—led by the United Kingdom and supported by the United States—and even African nations (led by South Africa) blocked any meaningful reference to a treatment goal, or to lower prices for HIV medication. The donors were scared about the cost. It was shameful, and I felt powerless in the face of their resistance. Worse, some AIDS activists held me responsible for this failure, and one even tried to attack me physically.

Surprisingly, the donor countries gave in on a target of $7 billion in funding by 2005, which was ironic, given that it included money for the treatment they had opposed in their negotiations on the declaration. So I was reassured. The other way around would have been far more problematic: a commitment to access to treatment without money would have made progress impossible. So I kept my mouth shut.

During the three hectic days of the special session in June 2001, the red AIDS ribbon was displayed every night on the UN building in New York. Even this had been hard to arrange, with multiple authorizations from departments I had never heard of. When our time and my patience ran out, I called in Louise Frechette, who agreed in 10 seconds that it was a great idea, and photos of this symbol zipped around the world: my contribution to monumental art. We also made sure that AIDS was visible in New York City, a town that had a serious HIV problem, from posters on buses, to church services, and red ribbons everywhere.

Meanwhile, in the austere General Assembly hall, 46 heads of state and government and high-level representatives of countries in the world, along with—a first—a South African woman living with HIV—gave one five-minute speech after the other. But we still had no agreement on the concluding declaration! When it was my turn to speak, I took a deep breath and went to the green marble rostrum I had so often seen on TV, from which just about every world leader since World War II has spoken. I looked into the mighty hall and said, “Two paths lead from this General Assembly Special Session. Two possible futures. One path simply continues from where we are today: an epidemic that we are fighting, but that is gradually defeating us. But there is another. The path out of the Special Session must be one of commitment to stop this epidemic. To go on until no one living with HIV is stigmatized, excluded, shut out; until all our young people know how to protect themselves from infection; until no infant is born infected with HIV. To go on until children orphaned by AIDS have the same prospects as any other children; until antiretroviral therapy is essential care for anyone living with HIV.”

Was it an impossible dream? I was already thinking of the follow-up, and how to make sure that the closing declaration would not be meaningless. The negotiations about its wording were at a standstill, but I used the opportunity to meet with an endless succession of presidents, prime ministers, and delegations, overwhelmed by the effort of ensuring that I would be in the right cubicle with the right country at the right time. As ever, Marie-Odile Emond, my executive assistant, had it all under control, as she would for many years stoically organize my life with devotion and an exceptional eye for detail, regardless of crisis. Without her, I could never have done this or many other tasks. The most remarkable meeting was with the delegation from “Somalia”: for the first time the three autonomous parts of what once was Somalia had decided to do something together—even though AIDS was definitely not the number one priority amid their never-ending civil war and famine.

Finally, Wensley and Ka, with Cravero on their side, hammered out an agreement on detailed, quantified targets for the fight against the epidemic. At 4
A.M.
on the third and final day of the special session, we managed to reach a declaration that was acceptable to all. It was vague on homosexuality and worldwide access to treatment, but strong on every other issue, calling, most notably, for the creation of a “Global Health Fund.” It set up a global road map, including the need to establish national AIDS commissions under the direct oversight of the president or prime minister, elevating AIDS to the level of real policy; quantified and dated targets for funding and reduction of the number of new HIV infections; and directions for nondiscrimination, condom promotion, and prevention programs. The “Declaration of Commitment on HIV/AIDS” became a benchmark for global action. World leaders became accountable to a clear set of commitments that they endorsed. Extensive media coverage on a scale unprecedented for an AIDS event contributed to raising awareness globally. Leaders could no longer claim that they did not know about the exceptional magnitude of the AIDS crisis or what needed to be done to stop it.

Retrospectively, 2001 was truly the tipping point in terms of politics, incubating the funding that was soon massively released. But I remained frustrated by our extremely slow progress in terms of making the various UN agencies work together. (There were seven, after the UN Office for Drugs and Crime joined.) There was great support at the top of the agencies, from people such as Jim Wolfensohn of the World Bank, Carol Bellamy of UNICEF, Nafis Sadik of UNFPA, and Mark Malloch Brown, the future deputy secretary-general. And on the ground there were good examples of synergies. But midlevel management remained entrenched in old habits and constantly increasing jealousy of our achievements at UNAIDS. I knew we should not let ourselves be deterred from our mission by such bad behavior, but it was at the very least a sad waste of resources.

CHAPTER 20

The Price of Life

F
ROM THE EARLIEST
days of the epidemic, patients and doctors alike were desperate to find effective treatments that could stave off the prospect of a swift and inevitable death from AIDS. And as always in times of suffering and war, some try to capitalize on the despair of people. Bogus treatments were promoted in many countries, particularly before antiretroviral therapy was widely available, sometimes with very high-level support from unscrupulous or deluded government officials. Unwillingly I got involved in many such cases, and had to speak up against scientific fraud and politically connected commercial interests.

Back in 1987, the Zairean government summoned Robin Ryder, the director of Projet SIDA, and me to a press conference that announced to the world that two African researchers had found a cure for AIDS, claiming that the virus had been cleared from patients’ bodies and they had even become HIV antibody negative. (This did not make sense biologically.) In honor of the presidents of the researchers’ countries of origin, an Egyptian surgeon and a Zairean hematologist, the “cure” was called MM1 for Mobutu Mubarak Number 1. We were pressured to endorse this medicine but never had access to its composition, nor to a vial of the pricey substance. Meanwhile desperate patients traveled far, some even from the United States, for this supposedly miraculous, but entirely bogus, treatment. At Mobutu’s request the African Development Bank gave Lurhuma, the “cure-finding” hematologist from the University of Kinshasa, millions of dollars, so for a while we at Projet SIDA kept a low profile in Kinshasa, for we had no treatment to offer.

There was a similar story in Kenya: during one of my visits in January 1990 to Nairobi, the Ministry of Health asked me to attend a press conference where Dr. Davy Koech from the Kenya Medical Research Institute (KEMRI)—a well-respected organization—announced at a press conference that “Kemron,” a low dosage of interferon alfa, cured patients with HIV. Again, some allegedly even tested HIV antibody negative after treatment. No details were given about the trial design, and there was no control group to assess whether the treatment was better than a placebo. (Though championed as an African invention, it actually originated in Texas, in the lab of a doctor named Joseph Cummins.)

Again, the “treatment” attracted patients from all over the world, who at great cost did
not
get better and certainly were not cured of HIV infection. Dr. Koech had high-level political support, and because there may have been some biological basis for the treatment with interferon alfa, very expensive trials were funded, including by WHO. In 1998 Ugandan AIDS researcher Elly Katabira independently demonstrated that Kemron was not better than placebo.

South Africa had its own quack remedies, with political support coming from President Mbeki. While still deputy president in 1997, he arranged a meeting of the full cabinet with cardiovascular researchers from Pretoria who claimed that “Virodene PO58,” presented as an African discovery, could cure AIDS. Not only was their scientific evidence not credible but also the researchers had performed human trials without ethical approval. Virodene contained dimethylformamide, a toxic industrial solvent. The subsequent chairs of the South African Medicines Control Council, Peter Folb and Helen Rees, courageously refused to bow to political pressure and refused to approve human trials. (Rees did not even waver after receiving death threats.) They were supported by the prestigious head of the Medical Research Council, Professor Malegapuru Makgoba. Despite this, the investigators, with support of the South African Government, conducted trials in the Tanzanian army as late as 2000. The South African government also supported claims by German physician Matthias Rath that his nutritional supplements could treat AIDS. At a press conference in Johannesburg in 2005 I had to denounce these claims, because they were putting people’s lives at risk.

In 2007 Gambia’s President Yahya Jammeh went even further by claiming that he personally could cure AIDS, asthma, and hypertension with natural herbs. Jammeh actively promoted his medicine as an alternative to antiretroviral therapy. (It is ironic that Gambia hosts the prestigious Medical Research Council laboratories, which have made major contributions to African health.) Jammeh even expelled the UN Resident Coordinator Fadzai Gwaradzimba, who had expressed doubts about the cure. African scientists, led by Professor Souleymane Mboup from neighboring Dakar, reacted strongly in an open letter denouncing these practices.

THE LAUNCH OF
UNAIDS in 1996 coincided with the discovery of antiretroviral treatment, but five years later we had made little progress. AIDS remained a death sentence in the developing world. The odds were against us, and in the 1990s it was impossible to conceive that a brand-new proprietary drug—moreover, a totally new class of drugs—would be made available to the poorest of the world: people who don’t even have access to basic care. There was just no precedent to build on, and yet we had no choice but to do everything possible to bring antiretroviral treatment where the needs were greatest: in the first place, Africa. We could not wait for normal market mechanisms to operate.

The obstacles were formidable and plural. Where did the resistance stem from? Not (yet) from the virus, but from institutions and experts; and there was as yet no dialogue that brought together all relevant parties. At first, long lists of why HIV treatment is not feasible in the developing world came from those who should have been at the forefront of the fight against AIDS. They were of course right that particularly in Africa, health services were in bad shape and health spending was very low, but by focusing on the obstacles, they entered into a state of intellectual and conceptual paralysis. Even WHO refused to include antiretrovirals on the list of essential drugs until 2002.

Development economists were as adamant as public health experts. As late as May 1998 World Bank economist Bill McGreevy wrote in a memo (as quoted by Barton Gellman in the
Washington Post
) “the brutal fact was that those who could pay for Africa’s AIDS therapy—the pharmaceutical industry by way of price cuts, and rich-country taxpayers by way of foreign aid—are very unlikely to be persuaded to do so.” Indeed, why
would
politicians commit taxpayers’ money to poor Africans, drug users, or prostitutes? Among politicians, President Jacques Chirac of France was a lonely voice calling for access to HIV treatment in Africa, which he did in Abidjan in December 1997—alienating other wealthy countries, for France’s actual commitment was limited to words until the creation of the Global Fund in 2002.

Thus international development agencies refused to support our calls for widespread access to HIV treatment. Here as well, there was a reasonable argument that it is risky to commit public funds from rich countries to provide lifelong treatment for a disease in another country, with ethically no possibility of pulling out (unlike most other forms of development assistance). In addition, the pharmaceutical industry had a very real interest in maintaining the high price of this new family of medications, as well as concerns that the development of resistance, due to inappropriate use of the drugs, would make their medications ineffective. Justifiable or not, intellectual property is the foundation of the industry’s business model. We had to deal with the big pharmaceutical companies, because for several years there were no real generic alternatives for these new medicines.

Many ministers of health in Africa were ambivalent about HIV treatment. On the one hand they were confronted with a growing burden of patients and hospital costs because of AIDS, and they could have put cheap drugs to good use. But their budgets weren’t even sufficient to deal with all the other health problems in their populations, and they were concerned that they couldn’t deliver on promises for HIV treatment. In addition, South African Health Minister Dr. Tshabalala-Msimang argued loud and long to her colleagues in the region that antiretrovirals were toxic and didn’t really treat AIDS at all—just as she did in front of the South African Parliament in Cape Town, when she claimed, with no proof whatsoever, that nevirapin had killed several women.

Activists such as Médecins Sans Frontières and the US Health Gap were great allies for UNAIDS, with their campaigns for universal access to HIV treatment. But at the same time, their extreme position regarding intellectual property rights—which they rejected—alienated industry and many governments, making a dialogue very difficult.

I did my own analysis. Working in Africa, I had seen how difficult it can be to administer even short-term, seemingly simple health services. I thought about what it would take to bring successful HIV treatment to people in Africa. Here’s what I came up with: First, we needed to make HIV testing more available and accessible. Before they can be treated, people need to know that they’re infected and people shouldn’t have to fear that if they test positive they will lose their jobs or social network. (Years before, in Nairobi, Marleen Temmerman and I encountered numerous pregnant women who were beaten by their husbands, or even expelled from the house, when they announced that they were HIV positive.) Second, we needed affordable, accessible medical and laboratory services on the ground to assess what stage of disease people have attained and ensure follow-up care. Third, we needed access to affordable, usable drugs. Fourth, we needed to help patients take their medication correctly. In those days it was essential for effective performance of the antiretroviral medication for the dozen or so pills to be taken exactly on time; people walked around New York with alarm clocks. In any case, I was convinced that we needed a public health approach to HIV treatment with uniform regimens—not only to ensure adherence to treatment, but also to reduce the risk of resistance development.

Many people argued that for that timing reason alone, antiretroviral treatment would never work in Africa. There’s a comment on the subject by Andrew Natsios, the administrator of USAID: “Many people in Africa have never seen a clock or a watch their entire lives. If you say, ‘One o’clock in the afternoon,’ they do not know what you are talking about.” Many people—public health specialists at WHO and staff of international development agencies—seemed to make lists of every single obstacle they could think of, and their conclusion was always that this was a nonstarter. The lists were reasonable then and, sadly, still are reasonable. But today 7 million people
are
receiving antiretroviral treatment, and it is keeping them alive.

I thought, well, fixing the health systems across Africa is probably more than UNAIDS can handle right now. And promoting more testing, when the drugs weren’t available, simply wouldn’t work: there was no incentive. So my conclusion was that we needed to get the price of the drugs down before we worked on the rest.

I became fairly obsessed by it. Basically every day I asked myself, how can we bring the price of antiretroviral treatment down? I had no experience in this, but there were already some examples of vaccines that had been made available to some countries via UNICEF at far lower prices than in the West. Moreover, I knew that if I bought almost any medication in a French pharmacy it would cost less than in Switzerland, even if the manufacturer was Swiss, because the French negotiated the price down. And when you take an airplane the person beside you may have paid one-third of the price of your ticket. So differential pricing wasn’t that unusual; we just hadn’t approached the problem in this way before.

There was one successful example: Merck had a lucrative drug, Ivermectin, originally developed for treating parasites in animals. But when Ivermectin was later shown to cure river blindness in humans, Merck provided it free for distribution in West Africa, where huge areas of fertile land infested with the infective agent, black fly, were available for farming. Could that be a model? I talked with some of the people who had been involved, like Dr. Ebrahim Samba of the WHO, but no. Why would a company freely distribute a recently developed, very expensive medication for lifelong treatment when it needed return on its investment? Merck’s Ivermectin had no human use in the developed world, but that wasn’t the case for antiretroviral medications. In addition, in the case of AIDS, we were talking about ultimately over 30 million people in low- and middle-income countries who would require treatment for life, not a short course as is the case for river blindness. The challenge in AIDS was simply far too big for such an approach; we needed affordable drugs, and given the level of poverty, the funding capacity of developing countries, and the scale of the problem, that meant very drastic price reductions: even a 50 percent price reduction on $10,000 was still out of reach for most countries in the world.

Back in 1991 Dr. Nakajima, the head of the World Health Organization, had convened meetings in Geneva with 18 pharmaceutical industry executives to discuss access to medicines to treat HIV and opportunistic infections. They led nowhere, as industry basically refused to discuss prices, saying they needed the income to fund R&D, and that in any case health services in Africa were not equipped for complex treatments. At a meeting in 1992 the pharmaceutical industry even objected to the use of the word “affordable” in text. There was hostility on both sides, with WHO also not able to come up with any funding, and the talks ended in 1993.

This was also the time when the Clinton administration was promoting
greater
patent protection worldwide, with Vice President Al Gore advocating the pharmaceutical industry’s lawsuit against Nelson Mandela over generic drugs; the World Trade Organization was launched in 1995, and its new agreement on Trade Related Intellectual Property Rights prohibited developing countries from producing or purchasing generics.

I decided to follow several paths to bring HIV treatment where it was needed most. The first one was to demonstrate that it is feasible to provide antiretroviral therapy to people in poor countries, to silence the skeptics with facts. The second was to negotiate lower prices. And the third, simultaneous with the others, was activism to put public pressure on industry, funders, and health ministers, because morally, I knew our case was very powerful.