No Time to Lose: A Life in Pursuit of Deadly Viruses (27 page)

Slow action on mother-to-child transmission of HIV reflected partly the poor state of maternal and neonatal health services in many African countries. These clinics, I knew, were and are swamped with hundreds of women a day; typically, they can take your blood pressure and that’s about it. But policy paralysis was also partly driven by a lack of leadership in international organizations, mainly due to the highly emotional controversy around HIV transmission through breast-feeding. There was no doubt that HIV can be transmitted by breast milk, but the research findings were sometimes conflicting; for example, some studies found that exclusive breast-feeding actually protected from HIV transmission. Above all, we knew that breast-feeding by HIV-negative mothers (the overwhelming majority of women) saved babies lives. UNICEF and others wanted to protect the progress made in promoting breast-feeding, which was always under threat from commercial pressures to sell baby formula. It is indeed true that in many areas, where clean water is not available, using baby formula can threaten children’s health. But so can AIDS: very much so. The question was how to ensure that women with HIV have the option to use affordable and safe breast-milk alternatives, to protect their babies from both HIV and diarrhea, while at the same time making sure that all other women breast-feed. This created a terrible dilemma. It was clearly urgent to run studies comparing which policy would save more lives—breast-feeding (with the risk of HIV transmission) or bottle-feeding (with the risk of diarrhea). But unfortunately emotions took over the debate. I convened several meetings, but none of them reached agreement. For years UNICEF and WHO avoided dealing with the challenges, and even in 1998 WHO published a nutrition manual stating there is no good alternative to breast-feeding. Retrospectively, I think I should have reached out more to the breast-feeding lobby to bring them together with AIDS interest groups. The world is full of single-issue groups—just as we were a single-issue group around AIDS—and the psycho-politics of all this can lead to tunnel vision. Whatever the reasons, a lot of time and lives were wasted by indecision on a tragically important issue.

Controversy surrounding the means by which to prevent sexual transmission of HIV also continued to rage. The question moved from theoretical to empirical when we certified that new HIV infections were declining in Uganda. Knowing which prevention intervention had made a difference was important for other countries, and for concentrating our efforts. But even today, there are heated debates about what exactly caused this decline, with a few claiming that it simply reflects the natural history of HIV, which was bound to decline anyway when those at risk were all infected. (This position is not supported by the data, by the way.) Others claimed it was all because of condom use, but there were also arguments that attributed the success to sexual abstinence, or monogamy. Actually it was probably a combination of the three “ABC” interventions, plus the urgency of countrywide mobilization and openness in discussion; in HIV prevention, the
how
is as important as the
what
. However, some scientists and journalists continue to fuel the debate in a fairly obsessive search for the magic bullet in HIV prevention—the single thing that made all the difference.

I regularly got letters or e-mails along the lines of “Dear Dr. Piot, if
only
UNAIDS would
_______________
(fill in the latest fashion in HIV prevention), the epidemic would be brought under control.” Some went further, accusing me of suppressing vital information. And on occasion researchers insisted that I was deliberately ignoring their own groundbreaking work. It takes a thick skin to be director of UNAIDS! But nuts and obsessives aside, I learned early on that anything with the word
only
does not work in AIDS: it is a combination of actions that has impact population-wide.

Stopping the spread of HIV in injecting drug users was no less controversial. HIV was spreading like a flash flood via shared needles in much of Eastern Europe and some parts of Asia. I had experience with it, having helped to set up the first needle exchange program in Belgium in the early nineties, before I moved to Geneva. It may seem counterintuitive to provide needles and syringes to drug users, but at UNAIDS we promoted needle exchange and methadone substitution programs, because there is very strong scientific evidence that both reduce transmission of HIV.

In the early years of UNAIDS, only a few European countries, plus Australia, Canada, and some US cities, were using this approach, but most countries opposed it, sometimes vehemently, as in Russia. For example, in 1998, US Secretary of Health and Human Services Donna Shalala tried—and failed—to fund “harm reduction programs” for injecting drug users; but they remained banned from federal aid until President Obama repealed them in 2010. (Meanwhile, a large number of states had supported such programs through independent funding.)

Addiction is a very complex and tragic issue. I admit that I have never been completely at ease with either purely repressive or totally liberal policies regarding addictive drugs. I had many confrontations with both sides. The AIDS community tends to be very liberal, and I had to disagree with some colleagues for whom using drugs was not a problem so long as the needles were clean. I always supported harm reduction techniques—which are scientifically proven to be effective—and the human rights of drug users, but to me, the loss of autonomy involved in addiction is a terrible thing.

Back in 1992, American researcher Don Francis and I were asked by the Swiss federal authorities to evaluate a needle exchange program in Zurich. (The Swiss still have no generalized paid maternity leave, but they have needle exchange and heroin distribution.) So we went to their “needle park”—a large garden near the Central Station—at around 4
P.M.
It was full of people injecting drugs, and purchasing drugs, in plain view. I saw one woman shooting up in a jugular vein in front of her child, and men in expensive suits coming straight from the office to buy a dose. At a kiosk where I guess they used to sell ice cream, the city health department was giving out clean needles. Don and I were baffled. Epidemiologically, sure, the program worked: all kinds of infections, not just HIV, were on the decrease. But, my God, it was scary to see the collective insanity of addiction up close.

Later I regularly met with drug users, to try to de-emotionalize the issue and convince policy makers to adopt a rational approach—with very mixed success. When the UN Office on Drugs and Crime joined UNAIDS we had access to a political mechanism to promote harm reduction, but it was hard work to move them from a police approach to one of public health. I think that what matters is to continue the dialogue, search for solutions, speak up for the users and for policy change, and I keep hoping that one day science discovers an effective treatment for the various addictions. So I guess even I sometimes dream of a magic bullet.

ANOTHER VERY DIFFICULT
question in our first, start-up year was how best to frame the AIDS epidemic. Did solving it require long-term social change? Public-health interventions? Economic development? UNDP was keen to consider the epidemic a problem of social, gender, and economic development; whereas Jonathan Mann saw it as a human-rights issue. Both these viewpoints clashed with the WHO and UNICEF culture of short-term technical solutions. And of course it’s obvious that we cannot wait until everyone has escaped poverty and all women are equal to men before we bring AIDS under control. But it’s also clear that the AIDS epidemic is determined by multiple social factors, and influencing these should help solve it.

Take the women in Zambia who sell fish. Some buy their fish on lakes in the northeastern part of the country, and sell it in the mining centers and capital city in the west. To keep the fish fresh and sellable during the journey, they need to store it in big refrigerators at the places where they stop overnight. Sex with the owner or manager of the fridges can bring the price down, but in a country with a very high HIV prevalence, it also places them at risk. So we arranged for the fisherwomen to collectively buy a refrigerator, and this eliminated the need for transactional sex. I liked this kind of very down-to-earth approach, which killed two birds with one stone: protecting women from HIV and providing them with a strong economic base. Again, it wasn’t one or the other: we needed both short-term protection and a long-term solution.

WE NEEDED TO
integrate all the different UN agencies, in every country, into a common approach to their AIDS programs. All of them—UNICEF with children, WHO with the health services, UNESCO with schools, UNFPA with family planning groups, the World Bank and UNDP with the Ministries of Finance—needed to be singing from one song sheet, with one strategic plan. This was Rob Moodie’s job.

With a dose of humor, much meditation, and unlimited energy to motivate people, Rob’s heroic efforts to establish UNAIDS at the country level were a continuous battle against bureaucracies and passive aggressiveness, in particular by WHO and UNDP. We had some very good candidates to become UNAIDS “Country Program Advisers” in key countries, but again, getting them into place was a seemingly never-ending uphill battle. We had prepared a shortlist of candidates even approved by partner agencies, but were still challenged. Candidates such as Heidi Larson—a PhD in anthropology who was working with the UN in Fiji and helping us on AIDS in the Asia region—was turned down by WHO and ministers of health in two countries because of not being a medical doctor or from the region. We began working on integrating programs through so-called interagency theme groups on HIV/AIDS in a number of countries. The various agencies slowly started to work together, from one budget, assisted by the Country Program Advisers whom we’d named. Over time they became Country Coordinators: this tiny semantic shift illustrated a much stronger position, because now they were
overseeing
the work. They became the driving force of UNAIDS, spearheading the AIDS response in several countries.

The UN resident coordinator—basically the UNDP country director, who traditionally represents the extended family of UN agencies—were the key people to make this happen. Where they were on our side, AIDS became a top issue for the whole of the UN in that country. That is what happened in Botswana, then the country with the highest HIV prevalence in the world: UN Resident Coordinator Debbie Landey, a Canadian, took the lead after I visited Gabarone in 1996. Together we advocated with Botswana’s political leadership, which became one of the most engaged on AIDS. In 2005 Debbie became my deputy in UNAIDS.

We had to invest so much time on getting the UN’s act together: endless months of theme groups, joint plans, meetings, meetings. A lot of ego and flag-planting—so many agencies that just wanted to be sure that the person on the photo was wearing their T-shirt. I disliked this posturing (and by the way always insisted that UNAIDS staff and cars
didn’t
wear our logo). I told our staff: we have a hierarchy of values. Our first commitment is to defeat this epidemic. Our second is to people living with HIV and affected by it. Our third is to the UN system as a whole, because we may be dysfunctional, sure, but we’re a family. And our fourth commitment is to this organization: UNAIDS. It seemed to me self-evident, but sometimes when I said it, it actually upset people.

In December 1996 we had a breakthrough in cooperation with the World Bank, which became a strong supporter after its initial reluctance. Its new president, Jim Wolfensohn, and the head of AIDS, Ethiopian immunologist Debrework Zewdie, were dynamite. UNICEF under its new leader Carol Bellamy, and UNFPA led by Dr. Nafis Sadik from Pakistan, also came on board gradually, but at the global level, the meetings I resented the most during the initial years of UNAIDS were those of the so-called Committee of Cosponsoring Organizations, which continued to feel like an avalanche of complaints and some more or less overt attacks. For example, even in October 1997, nearly three years after my appointment, Dr. Nakajima accused me of violating the UNAIDS memorandum of understanding, or of withholding money from developing countries. UNESCO supported him. This meeting was the first attended by the new UN secretary-general, Kofi Annan, and I was thrilled that he would be there, showing such strong interest in AIDS and support for our work. But it was also an embarrassing event exhibiting the dysfunctionality of the system, and I was furious that we had missed an opportunity to engage more with the secretary-general. In spite of this incident, Kofi Annan became the world’s chief AIDS advocate, and without his support UNAIDS would not have been able to achieve what we did.

We were making progress in setting up the organization, but perhaps unavoidably this meant, to some extent, that we initially neglected action on the ground. The reality was also that there was a huge gap between what we were capable of doing versus what we wanted to do—in particular in terms of funding AIDS programs in the field. I was also trying to do too many things. This has been a trait of mine throughout my life, and I have had to learn to fight it.

CHAPTER 18

The Lesson of the
Chameleon: Bringing Together the Brilliant Coalition

I
N JULY 1998,
the mood at the 12th International AIDS Confer
ence, in Geneva, was very far from the euphoria of the previous conference in Vancouver in 1996, where HIV infection became a treatable disease. The time of scientific breakthroughs seemed over, the results of HIV vaccine research were disappointing, antiretroviral drugs had some serious possible side effects, and above all for us in UNAIDS, hardly anybody in the developing world had access to antiretroviral therapy—with the exception of Brazil where the government early on was providing such treatment free of charge. In addition, two-and-a-half years after our start, I felt we were going nowhere with UNAIDS: we had spent an enormous amount of energy in building the organization and fighting UN and donor agencies, but our impact on the actual epidemic was clearly negligible. I worried that I was not the right person to lead such a gigantic effort.

We were constantly under attack. Our critics were donors, but also—and more important, for me—AIDS activists and people living with HIV.
Science
magazine wrote that I had “the most impossible job in the world.” I originally thought that within five years I could push AIDS to the top of the UN’s agenda and UNAIDS could then probably be absorbed into a reformed United Nations institution. Instead, I was in crisis. I needed advice.

So immediately after the Geneva conference, I convened another discreet brainstorming in Talloires, a tiny medieval town on Lake Annecy at driving distance from Geneva. I invited an unusual group of about 20 people, with about half working on AIDS and half outsiders. I wanted them to take a cold, hard look at what we were doing, and tell me frankly what they thought would make a difference against AIDS. The guest list included Bill Roedy, the president of MTV, whom I’d just met—a supercommunicator whose TV programs reached up to 800 million teenagers around the world; Larry Altman, the health reporter from the
New York Times
; Duff Gillespie from USAID and David Nabarro from the UK Department for International Development, two of our needling critics; and Helene Gayle, from the US CDC and a great supporter. I also invited Dr. Nkandu Luo, the Zambian minister of health, another constant critic. (I had offended many ministers of health by urging heads of state to take over AIDS leadership, thus taking away control over the AIDS budgets from their purview, so I needed to bring this constituency inside the tent.) Finally I invited several AIDS activists and people living with HIV, pharma executives, an adviser to President Museveni from Uganda, and Prasada Rao, who was trying hard to wake up India to the AIDS threat. The only colleagues from the UN system (besides some key UNAIDS staffers) were Daniel Tarantola, who was about to rejoin WHO, and Debrework Zewdie, who was rallying the World Bank to do more on AIDS.

As usual, I felt it is best to be open about the problems, and put everything on the table in the most honest possible way. So my opening speech was short and hard. I said I didn’t see any progress, the epidemic was exploding, and I needed help.

Our debates were animated, with little agreement on anything, but they provided me with the ideas I needed to take UNAIDS to the next level. The conclusion was that UNAIDS was doing a reasonable job in terms of epidemiology and of formulating technical solutions, but we weren’t enough in touch with the world of political power, where big decisions are made. I had begun to learn that in international politics there are only two things that count: the economy and security. As they say in France, the rest is just literature.

So we needed to influence ministers of finance. It’s a bit like the joke about Murphy, who robbed a bank: when the policeman said, “Murphy, why did you rob the bank?” he answered, “That’s where the money is.” It’s also where the power is in government—not with the minister of health.

We also needed the security establishment on our side; and although many people at that meeting were very skeptical about the UN there was one body they all took very seriously: the UN Security Council. That was key. Moreover, we needed to bring AIDS to other major political and financial platforms—G8 Summits, the World Economic Forum, and various regional bodies, particularly the Organization of African Unity and the Caribbean Community, as these were the most affected regions in the world.

Sometime before, my intuition told me that we had no chance to defeat this epidemic unless we pulled out of the “ghetto” of AIDS doctors, researchers, and activists, and built a broad coalition. Now at the retreat on Lake Annecy, I felt that we had the core strength that we needed. And while I complained about the difficulty of working in the hidebound UN system, nearly everyone else felt strongly that being part of the UN was a major strength. It gave UNAIDS legitimacy, potential access to top leaders, and a platform from which to deliver policy guidance—as long as I didn’t become a prisoner of intra-UN coordination.

Our goal was to curb the soaring graph of HIV transmission within five years. While further building the organization and trying to lead UN efforts, I from then on mainly concentrated on the politics: on global diplomacy.

With Sally Cowal, Jim Sherry, and my new chief of staff, Julia Cleves—a brilliant Englishwoman who could write a speech in 30 minutes—we sketched out a more political approach to AIDS. As long as there was agreement on the ultimate goal, and some basics were respected—such as the principles of human rights—we could happily work with groups and people with whom we did not always see eye to eye. Some purists felt we sold out but our collaborative strategy ultimately saved millions of lives. More radical activism was useful—in fact, essential—but it was not our job.

We mapped out who our friends and our enemies were. Who could be convinced to join the coalition? Which people could leverage political and economic power? It swiftly became obvious that one essential person would be my boss Kofi Annan: we didn’t just need him on board, we needed him to become the world’s AIDS advocate. And to increase our leverage with other policy makers, I asked Bernhard Schwartl
ä
nder and his team to begin working on two new areas of statistical analysis: more precise definition of the economic impact of AIDS, and also what level of financing would make a difference to the epidemic. Nobody had yet done this kind of investigation.

A few months later, in September 1998, Swissair Flight 111 from New York to Geneva crashed into the Atlantic Ocean near Nova Scotia. Jonathan Mann was on the plane with his wife, Mary Lou Clements, who was planning to attend a meeting on HIV vaccines. I asked Jonathan to come too, because I wanted to talk about his joining me in some capacity at UNAIDS. Jon was so great with ideas; as a spokesperson he was tireless, and I thought he could help with our new, high-visibility political strategy.

When Daniel Tarantola called me with the devastating news from Geneva airport—where he was waiting to pick up Jon and Mary Lou—I was speechless. It took a few hours before I realized that it was really true, and what a massive loss it was. It gave me an incredible sense of urgency:
I need to do so much before that happens to me too
.

A fine man named Michel Sidibé, who later became my successor, once taught me a lesson. We met in Uganda in 2000, where he was the UNICEF representative: he was chairing the interagency country Theme Group on AIDS. Michel was from Mali, had spent time in Zaire (now known as Congo), and he enjoyed life: we hit it off immediately. So we went out for dinner to Le Chateau, a steak restaurant in Kampala. And Michel told me a story.

At puberty, like most boys of his ethnic group, he went through initiation, so that he could learn to be an adult. He had to live alone with other boys his age and he was given a chameleon: for a week, he had to observe and think about this chameleon. After the allotted time, he returned to the elders and they told him about life and about the secrets of the ancestors. When they finished, they asked, “Tell us about the chameleon.” So Michel said, “It changes color.” “What else,” they asked. He listed characteristics. This was a long, typically Malian story. But the conclusion was that just by observing a chameleon one can learn life’s great lessons: First, a chameleon’s head is completely still. It always faces the same direction.
Stick to your goal
. Second, the eyes are always moving, scanning the environment.
Always be prepared
. Third, the color changes in function of the environment.
Be flexible
, know how to adapt, but keep the head pointing straight ahead. If it moves you’re an opportunist and you will fail. Fourth, a chameleon moves very deliberately.
Take one careful step at a time.
Fifth, the chameleon catches food by shooting out its tongue, and if it’s too soon or too late it won’t catch its prey—it will die.
Timing is everything.

Michel and I ate a big steak together, became friends for life, and a few months afterward I asked him to join me in UNAIDS as head of all country operations.

The chameleon story doesn’t tell you where to go, but it tells you to keep a balance between the need to change color and the need to stick to your guns. When I’m in a very complex situation, unsure how far to compromise and taking in everything around me, I ask, Does this fit with my strategic plan? The image of the chameleon is my guide.

THE PICTURE OF
AIDS that was taking shape by the beginning of 1998 was much worse than anticipated, especially in sub-Saharan Africa. There was growing evidence of the economic impact of the epidemic. Productivity was declining and tax revenues plummeted in the worst affected countries, while pressures on health services increased. Orphans were a growing tragedy and cost to society. Women’s vulnerability to HIV infection was clear. Our research revealed a shocking fact, not yet understood until then: in sub-Saharan Africa, women under age twenty-five were more than twice as likely to be infected with HIV than young men of their age. In some regions, such as in western Kenyan, women were as much as six times more likely to be infected than their male peers, attributable to high vulnerability of young girls to HIV infection and to younger women becoming infected by older men, not by boys their age. In some countries in southern Africa, life expectancy at birth was falling to levels not seen in 50 years. In Botswana, the likelihood that a fifteen-year-old boy would become infected with HIV in his lifetime was a shocking 60 percent. What was the cost to a company, to a country, of numbers such as these? And how much would it cost to do something about it? We needed to understand the equation of lost productivity and the economic impact of sickness and death versus cost of treatment and prevention. Above all, we needed those figures to convince hard-nosed economists to finance the fight on AIDS to levels that would make a real difference.

In January 1998 I organized a seminar at the World Bank on the demographic impact of AIDS. We showed projections of the changes in population structures due to the epidemic. You could see what’s called “the chimney effect.” Suddenly the plump age curve of a normal society—which peaks at around age thirty and slowly tapers off as people grow old and die—shrank into a chimney, with maximum population at around age twenty. Moreover the overall population loss was huge. In several countries, life expectancy at birth began to drop back to levels not seen since the 1960s. AIDS wasn’t just a health crisis: it was a development crisis that was damaging the future of entire societies. Those images had a big impact in the World Bank, because economists could look at them and immediately understand the age-specific impact on productive people. We were finally speaking their language.

You can’t build a movement or a coalition by decree or by rational planning. It is a combination of trial and error, being there at the right time, and hard, hard work. I traveled frantically across the globe to convince policy makers to confront AIDS with the vigor it required. I was driven by outrage about the shameful inaction of those who controlled power and money, and by a great sense of urgency, as the number of people dying every day was growing, now more than 6300. It seemed that people dying from AIDS did not matter, and I wondered whether the reaction would have been different if this had been happening at such a scale in America or Europe.

The ultimate constituency of the AIDS movement is people living with HIV and those affected by HIV. UNAIDS needed to connect better with them, which was not easy, as they always—and mostly rightly—felt that we were not doing enough. Our relationship would always be complex, since we were an intergovernmental body accountable to governments. But often we did manage to work with HIV activists in a very complementary, and sometimes even well-coordinated, way.

After all, our agenda was the same—at least, that was how I saw it. However, my first attempts to engage with AIDS activists and groups of people living with HIV in the United States were sobering. At a meeting in 1996 with groups from all over the country at the American Red Cross in Washington DC, they told me that they needed all their energy to ensure access to treatment in the United States and to support American AIDS patients who had lost jobs and homes. They wished me good luck, but that was it.

I was disappointed, but at least they were honest. Most of the time people promised to help, but that was where it ended. One exception was Eric Sawyer, the tall, energetic cofounder of ActUp New York, whom I had met at the Paris AIDS summit in 1994: he was a rare, early convert to the global perspective on the epidemic.

The situation in Europe was different: antiretroviral therapy rapidly became part of the universal health care system, often free of charge to the patient. Hence there was less local activism about access to treatment. In France, very early on, the largest AIDS service organization, AIDES, began supporting groups in francophone Africa and in Eastern Europe. ActUp Paris was a very small group, but they had superb communication skills, were popular with the media, and vigorously fought nearly everybody, including us at UNAIDS. At one point ActUp activists invaded a meeting of our board and demanded universal access to treatment. Personal attacks were part of their style. One day they went too far, however, and alienated the French public. I was participating in the
Sidaction
held in Paris TV studios—an annual major fund-raising event for AIDS—when the representative of ActUp shouted that France was
un pays de merde
, a shit-hole, and further insulted the people who were donating money over the phone. Donations collapsed, and the
Sidaction
never really recovered. I could understand the anger of activists as they faced complacency and handouts—we were all angry and frustrated—but it reminded me again how counterproductive and dangerous extremism can be. With friends like that, you don’t need enemies.