No Time to Lose: A Life in Pursuit of Deadly Viruses (26 page)

There was also constant, never-ending friction with the cosponsoring agencies. It started the second week of January, when I called a meeting of colleagues in charge of AIDS in the six partner agencies to discuss how we would work together. This was a sobering experience. When, at the start of the meeting the facilitator asked participants the classic warming-up question about their expectations for this meeting to define the new program, the UNDP representatives bluntly said, “No expectations whatsoever.” The tone was set.

To everything I proposed, the task force of UN agency representatives at first responded no. I had to recoup, get political and diplomatic support, and go to their principals, who were far more open and reasonable than their staff but initially made little effort to stop their tiresomely bad behavior. In fairness, it was not all ill will; much of this opposition had to do with different institutional cultures—people were not used to thinking outside their own organizational box. But the constant bickering was extremely draining. I remember one meeting where WHO, UNICEF, World Bank, and UNDP could not even agree on what the words “program” and “programming” meant.

WHO wanted to keep all the technical work under its control. The World Bank emphasized in a memo that the “Bank would assume no liability” for UNAIDS and wished to have “as little involvement as possible.” So throughout my tenure the best-case scenario was essentially a juggle between conflicting oppositions, avoiding the disaster that would ensue if there were ever a united front of all UN organizations against us. Asking for consensus in our favor would have been utopian.

Today I know that we were far ahead of our times in terms of working across the very diverse United Nations system, with its nearly 50 agencies and organizations covering about every aspect of society and governance. We were trailblazers for what is now a much more unified UN system than in the midnineties. But at times I truly felt I was meeting the worst aspects of human nature. For people working in the UN to be so wrapped up in issues of turf and ego and bureaucratic politics, in the face of a human problem so terrifying, well, it was deeply demoralizing and profoundly unethical. It made me angry and more determined at the same time. My skin grew a little bit thicker every day, and I reminded my team that we should not be deterred by bureaucratic guerrilla warfare, but build out the organization, solidify support outside the system, and never forget that we were privileged to be working on one of the most important challenges of our time. That kept us going.

I missed contact with people on the ground and with people living with HIV, and decided that my first public appearance as executive director of UNAIDS would be among them. So in March, I attended the seventh annual conference for the Global Network of People Living with HIV/AIDS in Cape Town—the meeting taking place for the first time ever in Africa. By then, 850,000 people were believed to be HIV positive in South Africa alone: approximately 2 percent of the population. I spoke at the opening, together with Thabo Mbeki, then Nelson Mandela’s deputy president. He gave a remarkable speech, and although he was a little stiff, I thought we had a good rapport. I was impressed by his sharp mind and thought he would be a strong, perhaps key ally for us. (Sadly the future proved me very wrong.)

Those were historic days in South Africa. The ANC had taken power barely a year before, following the end of the apartheid regime that had ignored the looming HIV epidemic. There was immense hope of a better future for all. During this visit, I had intense discussions with AIDS activists and people with HIV from the country and all over the world. I met some remarkable people, each of whom made history in their own right—from Quarraisha Abdool Karim, who was struggling to set up a national AIDS program at a South African Ministry of Health still dominated by the old guard, to Edwin Cameron, an Afrikaner gay man living with HIV who is now a justice at the Constitutional Court. The AIDS activists’ expectations of UNAIDS were enormous—completely out of line with our resources—but I returned to Geneva re-energized and more convinced than ever that a successful response to AIDS would not be possible without restoring the health and dignity of people with HIV. I was determined to make that our core goal.

I headed back into the trenches of political rivalry. As it turned out the UN member states did not agree on the mission and structure of our new program. So despite my total lack of experience in this field, I had to try to broker political agreement among governments with hugely diverse interests. UN civil servants are not supposed to interfere with political processes, but if I hadn’t gotten directly involved, the agenda would have ground to a halt. It was a superfast learning curve, but fortunately I could count on a number of friendly diplomats in the New York missions of countries such as Belgium, the Netherlands, India, Brazil, Uganda, Canada, Sweden, and the United States. One of my main allies turned out to be Ambassador Richard Butler, the Australian president of ECOSOC. He was a bulldozer, very committed to UN reform in the sense of agencies becoming more transparent and more accountable to member states, and he felt the UN agency heads were trying to pull a fast one. He pushed through an ECOSOC resolution that made it clear that I was principally accountable to the member states—not the cosponsoring agencies—and set up a “Programme Coordination Board” to oversee our work.

People were running around with calculators, working out which countries should be represented on the board; it ended with 22 countries, 5 each from Africa and Asia, 2 from Eastern Europe, 3 from Latin America and the Caribbean, and 7 from Western Europe and North America. Once again, I was adamant that the board include representatives from community groups and people with HIV. Not surprisingly, China and Cuba objected strongly to membership by nonstate actors. But unexpectedly the Netherlands also had objections, because they felt that only states legally represent people and can be held accountable. With a promise that this would not be a precedent for other UN governing bodies, five nongovernmental organizations were invited to take part, one each from Africa, Asia, Latin America, North America, and Europe. This was the first of a still unfinished series of exceptions made in the name of the urgency and exceptional nature of the AIDS epidemic. UNAIDS is still the only UN body with nongovernmental organization representatives on its governing board, albeit with no voting rights. (The NGOs, led by As Sy from Senegal, actually rejected voting rights, as they did not want to be held accountable for every decision made by UNAIDS.)

Thus on July 3, 1995, the Economic and Social Council of the United Nations unanimously voted to establish the Joint and Cosponsored United Nations Programme on HIV/AIDS. This resolution was our founding charter, and it laid down language that I could work with. For example, WHO would not “administer” the UNAIDS budget but would give “administrative support” to us. Trying to explain this kind of hair-splitting nuance to friends, I could see they thought I had gone insane—how could I waste my time on something so petty? But by now I knew that in international relations, every tiny word could make a huge difference.

We had hired staff, listened to people, strategized, and set down a legal foundation that I could work with. Now I had to raise money. But at the first meeting of our Programme Coordination Board, in July, there were major disagreements over our budget. I think some countries saw UNAIDS as a way to cut their contribution to the UN and expand their own, bilateral programs on AIDS. I was asking for $140 million for two years. (This was, incidentally, far less than what Mike Merson’s budget at GPA had been.) I felt strongly that we should have a small number of UNAIDS staff in countries as advisers and coordinators, but that we shouldn’t directly pay for national staff and cars: governments needed to take responsibility for AIDS programs as part of their own agendas. So I reduced expatriate staff and cut the four-wheel drive cars and per diems. I wanted to see a Kenyan person coordinating AIDS work in Kenya, paid by the Kenyan government. (Of course donors wanted this too, as this was a time of declining aid budgets after the end of the Cold War.)

Still donor countries were divided about what UNAIDS should do. The United States felt we should implement AIDS activities on the ground, and the United Kingdom argued that we should be limited to a small group of coordinators and knowledge disseminators in Geneva. Developing countries and NGOs wanted a large budget, the majority going to their activities: When I became aware of the intense lobbying by the United Kingdom and other donors in the board room, I feared that the board would decide on a budget that would make it impossible to do our job. I asked for time out. This was one of those moments in life where I could not give in. I walked right up to the lion’s den.

As the delegates milled around the atrium I went over to Dr. David Nabarro, who represented the United Kingdom; he was a capable and influential man, but he was also the main opponent of our budget. A circle with half of the delegates formed around us, and you could have heard a pin drop. What I said was, roughly, “Listen. You donors set this up. If you want it to succeed, you fund it right. Otherwise I’m out. This budget is not negotiable, because you’re setting us up to fail. And if we fail,
you
will be held accountable for failing to do anything against the biggest epidemic in recent history.” I actually shook him by his lapels. (David and I later became very good friends, by the way. He is now the senior UN coordinator for avian and human flu.) Before it got out of hand, Nils Kastberg, the Swedish diplomat who had headed the initial task force that set up UNAIDS in 1994, intervened to get us to simmer down, and ultimately the board gave us a mandate to develop a budget within an indicative range from US $120 to $140 million for the biennium 1996–1997.

It was lean, but we felt that we were on the cutting edge of UN reform. We were a taut little mammal in a world of brontosauruses.

We decided to launch UNAIDS at the UN in New York on World AIDS Day, December 1, 1995. Sally Cowal had ensured the participation of high-level diplomats, including Madeleine Albright, who was the US ambassador to the UN. The event was not a success. I was scheduled to make a speech in the ECOSOC chamber in the main UN building. We had invited all the delegations and a number of celebrities and activists. But we had failed to tell UN security that we were expecting outsiders, and many guests could not get past security on time. So we launched not with a bang but with a whimper.

By this time, over 20 million people were living with HIV globally. Perhaps the most serious epidemic known to humankind was now the focus of a staff of 100 people in a little office in Geneva.

Earlier that year, I had received a phone call from the private secretary of Albert the Second, king of the Belgians (and interestingly, not king of Belgium). He asked whether I would accept to be ennobled as a baron. This had definitely not ever featured in my life plan, and in fact I had mixed feelings about the persistence of these titles. But I recalled the saying about such honors—“one doesn’t ask for them, but one doesn’t turn them down”—and accepted; later, thinking about it, I found that I actually
was
honored. As my motto I chose “KEN UZELF:
Know yourself
.” But apparently I also needed a coat of arms. I wanted a red ribbon, symbol of the AIDS movement, in it. This led to some trouble with the Belgian Council of Nobility, as the red ribbon did not exist when the medieval rules of heraldry were established. But in the end they gave in. So now I have a coat of arms: an AIDS ribbon with two hands of solidarity and a pair of Nubian demoiselle cranes.

CHAPTER 17

Getting the Basics Right

F
OR UNAIDS TO
be able to deliver a credible message, we needed solid data on HIV; success stories; clear strategies about what to do against the epidemic; and a country presence. This, in addition to our efforts to start building a broad global constituency for the AIDS cause, was the agenda for our first couple of years.

As a scientist, I wanted to make sure that the facts about the occurrence and spread of HIV not only showed authorities and the media what the situation was in a given country and worldwide but also established a baseline against which our impact could be measured. WHO was previously responsible for numbers and epidemiological surveillance. What that meant in practice was basically that someone at WHO waited until the Ministry of Health filed a report, and then the WHO person typed it into a form: “Ah, 23 cases of AIDS in Romania.” I had seen this essentially passive system and knew it was profoundly inaccurate, leading to massive underreporting, especially considering the deliberate, official denial of reality: “We don’t have an AIDS problem
here
.” Tardiness and poor standardization further sapped the data of any useful value.

I asked German epidemiologist Bernhard Schwartländer to set up the system. Bernhard is a prince among epidemiologists, with an archetypical
grundlichkeit
(thoroughness), and his remarkable ability to bring people together turned out to be key to success. He designed a system in which every country’s population was assessed and a sample size determined, so that, for example, 300 pregnant women (as a surrogate for the sexually active population) would be tested for HIV in a number of locations, in addition to samples of patients in STD clinics and other high-risk groups. We managed to obtain reports at standard times in a standard way, training people in almost every country to do the surveillance work, with quality-control checks on the data. It’s not a perfect system but I’m aware of no disease where this was done at this scale.

We worked hand in hand with Daniel Tarantola, Jonathan Mann’s right hand; he had moved to Harvard University, and they had started their own estimates of AIDS in the world. We also partnered with the US Bureau of the Census, which put together an impressive data bank on HIV. Finally, we asked the best epidemiologists in the world to independently review the methods and data, to make sure they were sound. The last thing we needed was to confuse the world with different and conflicting estimates of HIV!

Even though Bernhard’s system was strong, getting the facts right took way longer than I ever expected. First there was the poor status of surveillance systems in many countries. Testing everybody in a country to find out the exact number of infected people is neither feasible nor affordable, so we had to rely on relatively small samples in the population, and then extrapolate to a country as a whole—just as opinion polls are done for people’s voting intentions, for example. Estimating the spread of HIV was complicated because the virus is not distributed evenly across the population. Since it is sexually transmitted, it clusters in higher-risk groups. So representative samples of the so-called general population may not be useful; in many places HIV mainly affects gay men, or truck drivers, or drug users.

We also encountered political denial about HIV estimates, but it’s hard to argue with vetted data and dead bodies. Countries like Russia, China, India, and South Africa at some point all accused UNAIDS of inflating figures. Russia, and in fact most former USSR countries (with the notable exception of Ukraine), simply did not want to deal with AIDS: at the time, the tidal wave of HIV that would swamp heroin users across the former USSR was still invisible and unreported, and they wanted to keep it that way. Even when Russia began to face an explosive HIV epidemic, in the late 1990s, it downplayed the problem.

China too wanted initially to control all information; and Chinese officials were reluctant to change their statistical systems to indulge our concept of scientifically established random sampling. The population is also so vast that any estimate is a huge challenge, with provinces of over 100 million people. Later, however, China became very open about its AIDS problem.

India has a long history of disputing the statistics of international organizations, and its politicians in the early 1990s were not yet open to discussing risks associated with prostitution, homosexuality, and other taboo subjects. As it turned out, our estimates were not solid enough, and in 2007, when better local data became available, we announced a major decrease in our estimated number of people with HIV in India. We also had big problems with South Africa’s reports, especially after 2000, due to President Mbeki’s denialist policies. Some European countries were sloppy about their contributions, too—surprisingly even more so than a few of the African countries. For example, as late as 2004, we received forms filled in with pencil from Austria.

Still, we checked and re-checked the data, to obtain some of the best global estimates on a single disease. I felt it was vital to be transparent and guided by the science, not by the imperatives of advocacy or communication, so when we had got the numbers wrong, we said so.

But numbers weren’t enough. For UNAIDS to get its message across, we needed success stories, because to mobilize money and convince policy makers, it’s not enough to demonstrate that something is a really bad problem. If you can’t do something about it, and it’s a hopeless case, then what’s the point? As my old professor of social medicine in Ghent used to say, “a problem without a solution is not a problem.” I started scouting for success stories back when I was at the Global Programme on AIDS. Then, Uganda and Thailand reported—basically, anecdotal evidence—that programs to shift people’s sexual behavior were working. We saw this among gay men in some North American and European cities in the 1980s, but never in the developing world. So now I jumped on it.

Our data confirmed that the incidence of new HIV infections was declining slightly in both Uganda and Thailand—very different countries. In both countries, the key to this success was swift and early political action. In Uganda, President Yoweri Museveni had learned of the AIDS epidemic in 1986 from Cuban leader Fidel Castro, who helped him overthrow the previous Ugandan dictatorship. Museveni was a frank man—a former farmer and pastor, whose speeches were full of rural images and a very down-to-earth grasp of the world. He told me how shocked he had been the day Castro informed him that roughly one-third of the Ugandan soldiers sent to Cuba for training were positive for HIV. (At the time Cuba was testing everyone in the country and confining all HIV-positive individuals to camps.) To his credit, Museveni grasped the implications: he knew this might destroy both his army and his country. Unlike most African governments his administration acted quickly, with massive education campaigns through radio and traditional channels. The president’s slogan was “zero grazing”—another cattle image: monogamy. This evolved into the “ABC” campaign: Abstain, Be Faithful, or use a Condom.

WHO’s GPA and USAID provided strong logistic and financial support but the Ugandan response was inspired and led locally by AIDS pioneers such as Sam Okware, Elly Katabira, David Serwadda, Nelson Sewankambo, and David Opulo, as well as Noerine Kaleeba’s TASO. It was the first country where AIDS became a subject that one could openly discuss in society at large. One evening I was having dinner with Ugandan friends when one of the attendees stood up before the end of the meal, saying, “Sorry to leave early, but I need my rest because of HIV.” Nobody fell off their chair; we wished him good night, and the conversation continued where it had stopped. I thought, that’s how it should become all over the world.

Nationwide, the prevalence of AIDS in Uganda peaked in 1992, by which time 31 percent of pregnant women tested positive. By 1996 it had fallen to less than 20 percent. (It is now just over 6 percent, though slowly rising again.)

In Thailand, Mechai Viravaidya, a former deputy minister of industry with a vivid personality and a contagious love for people, spearheaded a humorous and effective anti-AIDS campaign out of the office of Prime Minister Khun Anand Panyarachun, together with Werasit Sittitrai, who had joined our staff. Their program consisted of three major campaigns: 100 percent condom use during sexual encounters with prostitutes, a “respect for women” campaign, and a barrage of anti-AIDS messages that were aired every hour on TV and radio. Every school was required to teach AIDS education classes. Mechai also taught schoolchildren to blow up condoms like balloons, to reduce embarrassment; he even ran a chain of restaurants called Cabbages and Condoms. It got to the point where in Thailand a condom is known as a Mechai—surely the supreme tribute to good branding. In 2004 during the Bangkok AIDS Conference Mechai and I distributed condoms at a highway tollbooth. Every single driver, male and female, recognized Mechai, and nobody seemed offended.

Less spectacularly, but just as significantly, Thai Prime Minister Anand had moved responsibility for AIDS programs from the Ministry of Health to his own office. The Thai approach was about as pragmatic as possible, with its chief aim to keep sex (including the lucrative sex industry) safe. And the results were just as unequivocal: with nationwide tests on army recruits, their data were extremely precise, and they could trace a decline in HIV prevalence in specific parts of the country.

These two countries became our beacons of hope in a grim landscape. A little later we added Senegal, where low HIV prevalence was maintained, probably thanks to a powerful synergy of the political leadership of President Abdou Diouf, technical leadership by bright young Senegalese experts such as Ibrahim Ndoye and Souleymane Mboup, a solid fabric of society, and Muslim and Catholic leaders, who used their pulpits to spread HIV prevention messages.

So AIDS was a very bad problem, sure, but it now had the beginnings of a solution: committed leadership, well-funded programs for HIV prevention (there was no effective treatment when UNAIDS started), and grassroots activism and support. Uganda became a core part of our political and communications strategy, because (a) if Uganda could do this there was no reason why Zambia, or Cambodia or Guatemala couldn’t achieve similar results; and (b) it was clearly worthwhile for Sweden, or Canada, to invest in such a strategy, because it promised to have real impact. We fondly imagined that Thailand, Uganda, and Senegal would soon be joined by other examples. But it was ten years before we could indicate over a dozen countries whose prevalence of HIV was falling.

I made Uganda the cornerstone of my speech at the first major international event for UNAIDS. The 11th International AIDS Conference, which took place in Vancouver in July 1996, was an important test of our influence in the broader (and highly critical) AIDS community, as well as with the world’s media. By then this annual AIDS-research conference had morphed into a huge event, with 15,000 delegates and 2000 reporters. So it was a significant opportunity for me to publicize UNAIDS, and even though I had to overcome a high degree of shyness and fear when talking to big crowds—my natural tendency as a child was to sit in a corner with a book—I lobbied hard to obtain a slot for our unknown agency at the opening plenary. It was difficult. As past president of the International AIDS Society I thought it would be easy, but as it turned out some people felt I had switched sides when I went to work for the UN.

We presented our first attempts at standardized statistics. Over 33 million adults and children worldwide had been infected with HIV cumulatively. Over 90 percent of them lived in the developing world. In the past year alone, 3 million adults became infected: 8000 new infections per day.
Every day
over 6,500 adults were being newly infected in Africa; 800 in Southeast Asia; and 270 in the industrialized world. Partly because of these figures, Vancouver was the first international AIDS conference where the developing world was firmly on the agenda.

Most significantly, the Vancouver conference brought the AIDS community an extremely welcome shot of good news—a game changer that would completely change the life of people with HIV, as well as how the epidemic is perceived. A combination of three or more antiretroviral drugs, taken simultaneously, could significantly prolong life and delay the onset of AIDS symptoms in HIV-positive people. Known as highly active anti-retroviral therapy, HAART gave hope that seropositive people could live normal lives, with a near-normal life-span. I called Marie Laga, my successor in Antwerp, to share the news about this Copernican revolution for AIDS because she could not attend the conference; she was about to deliver and was more enthusiastic about the birth of her healthy boy Jef.

This treatment was incredibly expensive: up to US $20,000 per person per year. So although I was enthusiastic about the breakthrough, I was immediately concerned that the majority of people who needed it were in poor countries and simply could not afford the bill. Unacceptable. We needed to give patients in the developing world access to HAART. Human rights—just simple justice—demanded it. Thus in my speech I called for “bold action on many fronts” to ensure access to antiretroviral treatment for people with HIV in developing countries. Many years passed before this dream became reality, however.

A next challenge was to unify the world’s AIDS strategies, and in the first place those of UNAIDS’ partner agencies in the UN. On some policy issues it was extremely hard to reach agreement. The prevention of mother-to-child transmission of HIV was a first and very difficult test case. In February 1998, the Thai Ministry of Public Health and the US Centers for Disease Control announced that a trial had shown that a short course of AZT could dramatically reduce the risk that pregnant women would pass on HIV to their newborns. Soon after, another trial indicated that single-dose nevirapin was also effective. This was, to me, absolutely terrific news, and I fondly imagined that a prevention regimen would be swiftly and universally adopted, since we finally had a classic medical intervention to save babies, free from all the controversies around prevention of sexual transmission of HIV. How wrong I was! I kept pushing UNICEF, as the UN agency responsible for the protection of children, to put the subject at the top of its agenda. But even today, nearly 15 years after the first scientific evidence came in, coverage for mother-to-child transmission prevention is still only 60 percent.