No Time to Lose: A Life in Pursuit of Deadly Viruses

by Piot, Peter

  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.

  One of the most moving encounters I had was in Kiev, Ukraine, in 1999 at the founding convention of the All Ukrainian Network of People with HIV. I was their special guest, and it was a closed meeting of about 200 infected people from all over Ukraine, which was going through an epidemic explosion of HIV infection. I entered the very cold room in a university building designed by communist architects, and it felt as though I could physically detect their energy, hope, and loneliness in a society that often violently rejected people with HIV. They were beautiful, sweet, intelligent young men and women—although actually most delegates and speakers were women, and indeed women are often the backbone of the AIDS response outside the Western world. I could not stop thinking about my daughter Sara, then of a similar age. These were not your stereotypical junkies; often they were highly educated and many had been infected through occasional and more-or-less experimental drug use.

  I spent hours with them discussing their fears, their plans, and how we could help them. They were our raison d’être, and it seemed that my job was a cup of tea compared to what they were up against. Being united and taking a positive view of life was their force. In subsequent years, following many battles, they did make important changes to Ukraine—indeed, they were among the first of a series of grassroots democratic movements in the country. Following that meeting I went to the imposing presidential palace to see President Leonid Kuchma, whose daughter Elena Pinchuck ran a foundation active on AIDS. I transmitted the demands of the people I had just met, and we discussed a number of issues; later, Ukraine became an important voice on AIDS in the UN.

  BRAZIL WAS AN early leader on AIDS issues. Its gay community had been badly hit by the epidemic early on. Following years of military dictatorship, there was a vibrant civil society in Brazil in the 1990s. The new constitution also stipulated that health was a right, which gave politicians and AIDS activists legal grounds for their demands. In addition, Brazilian society was open to very frank and pragmatic messages about HIV prevention, condoms, and sexuality; people seemed to have fewer hang-ups about these things than in many other countries.

  The Brazilian AIDS Program turned Carnival around and used the enormously popular festival to spread HIV prevention messages and distribute millions of condoms. I attended rehearsals at the famous Mangheira Samba School in a crowded popular neighborhood of Rio de Janeiro in 1999. As the incredibly intoxicating carnival drums resounded and young and old sashayed and sambaed past dressed in the school’s pink and green colors, people were debating how to make condom use more exciting and erotic. I was none too sure how to participate in the discussions.

  I became a regular visitor to Brazil during my tenure at UNAIDS, together with my long-standing Brazilian colleagues Luiz Loures and Pedro Chequer. As well as being technically very competent—often the case with public health specialists in Brazil—both were also supreme political operators. Thus we spent quite a bit of time in the corridors of Brasilia, the unlikely, butterfly-shaped capital that was built in the fifties in the middle of the jungle.

  In 1998, Brazil went through a major fiscal crisis, with enormous public debt and a devaluation of the national currency, the real. The International Monetary Fund also imposed drastic budget cuts as a condition for its assistance. And among the cuts being envisaged was the provision of antiretroviral therapy to AIDS patients. (Brazil was just about the only developing country that was offering this treatment on a large scale, and had started producing generic antiretroviral drugs to bring the price of treatment down.)

  This would have been a death sentence for many currently receiving the treatment in Brazil. It would also have been a major setback internationally. I flew immediately to Brasilia. Actually, convincing President Fernando Henrique Cardoso and his Health Minister José Serra was not that difficult. Their commitment to the AIDS cause was profound. Cardoso and I gave a dramatic press conference at the Presidential Palace, confirming the country’s commitment to treatment for AIDS patients.

  This engagement continued under President Lula, who started a condom factory in the Amazon rainforest—the source of rubber. Lula was one of the most colorful characters among the many heads of state I met. During a meeting in his office in 2005 Lula embarrassed his minister of health by telling me: “My minister of health has said we should stop smoking, but the president likes his cigar. He says no sugar, but how can I drink coffee without sugar? No to alcohol—but the president likes his cachaça every evening. Are you now coming to tell me no more sex?” He then laughed loudly. Both presidents had instructed their diplomats to support UNAIDS and stand firm on access to HIV medicines in developing countries, including via generic medications. Brazil’s ambassadors are extremely competent and could be very persistent when a multilateral organization did not stand up for the interests of poorer countries.

  There is of course another side of Brazil, a country with some of the greatest inequities in the world. In 2002 I attended a meeting of the Inter American Development Bank in Fortaleza, in the northeast. I had learned how to talk to bankers and finance people in meetings, but socializing with them after the meetings was not always my cup of tea. So I walked around town and talked to people about their lives—difficult, but also full of joy and hope. While jogging along the beachfront in the morning, I saw children and adults digging into the garbage, and thought about the two kinds of people there are in this world: those who fill garbage bins with their castoffs, and those who empty them for their survival.

  PEOPLE ALWAYS WANT to hear about my meetings with Fidel Castro, and it’s true that he was a very unusual man. I went
to Cuba a few times in the 1990s to attend conferences and meet with officials: Cuba had a small AIDS epidemic, mostly imported to the island by soldiers who were “assisting” with various African wars, but the authorities essentially imprisoned all HIV-positive people in sanatoriums, a policy that obviously violated their human rights, not to mention its impossible expense. In October 1999 I arrived in Havana for a meeting of all Latin American Ministers of Health with Luiz Loures, who was in charge of Latin America for UNAIDS, and Peggy McEvoy, the head of UNAIDS’ Caribbean section. Peggy was an experienced American public health specialist who had grown up in Cuba in the McCarthy years, when her father, a scriptwriter, was banned from working in Hollywood. She spoke Spanish the Cuban way. Just as we were heading back to our rooms to sleep, exhausted from jet lag, I received a message: the Commandante wanted to see me.

  It was about 9 P.M. when we arrived at the Presidential Palace in a torrential tropical storm. It is a mixture of Hispanic colonial baroque and modern buildings, with an amazing tropical fern and rock garden. After a short wait, Fidel arrived in olive-gray fatigues, a pair of old Adidas sneakers, and a cap. (By the way, it is impossible to call him Mr. Castro.) He was a surprisingly big man, his skin that of an elderly person but his posture vigorous, and he began talking—a flow of talk, almost uninterruptible—about the floods in several provinces. He seemed obsessed by figures, detailing the number of hectoliters of water per square meter that had fallen in each of the provinces. At some point I managed to say, “Excuse me, Commandante, we are in solidarity with your people suffering from the floods, but I’m here for AIDS.”

  “Hah! Yes, you’re the AIDS guy.” So he switched to a flow of questions about AIDS. How many cases in Jamaica, how many in Angola, what incidence, what prevalence. He led me into his office and asked what I drank, so I requested a glass of water. Absolutely unacceptable. So I asked for a mojito and the conversation continued. He wanted to know everything: which country had done best with the epidemic, and how, and why; and then me, my background, my experience in Africa, AIDS in Africa. There was an interpreter present, but Fidel’s was the slow and highly articulated Spanish of a man used to speaking to crowds, so I could understand nearly everything, and he could pick up my English and French and rudimentary Spanish.

  We discussed Cuba’s policy of quarantining everyone who was HIV positive, and forcing tests on every one of their past sexual partners. I told him it was ineffective, as well as unfair, far too expensive, and all-around unworkable. He took it well. Then he broke off. “Aren’t you hungry?” It was after midnight, but Fidel instructed his secretary to call in a vice-president, and some ministers—“Hah! There’s this interesting guy in my office, come and meet him”—and within 45 minutes they had turned up, bleary eyed, and the door opened to the dining room. No sleep when you are in the Cuban government.

  Peggy and Luis were still taking notes on table napkins about any discussions that seemed germane, but by now we had moved on to talking about global warming and the UN. Fidel made a windy statement about the imminent decline of capitalism. I said, “Come on, Fidel, don’t give me that, capitalism isn’t going to fall”—by this time almost all vestiges of diplomatic politesse had been shed.

  Another long debate was certainly forthcoming, but by now my bladder was exploding. This can be tricky in a diplomatic setting: the protocol is never to evoke such lowly bodily functions. However, I said, “Fidel, donde està el baño?” and he quickly responded, “Hah! I’ll go with you.” So there was an unforgettable moment of striding behind Fidel Castro through the shadowy corridors of the Palacio de la Revolucion in Havana at two in the morning, past sleeping young soldiers in battledress with their guns propped up alongside them.

  We bade each other adieu at about four in the morning, and although I was exhausted, I couldn’t sleep. My meeting was at 9 A.M., so I showered and reviewed my speech, and managed to deliver it in my poor Spanish to the assembled Latin American ministers of health. In contrast to the director of the Pan American Health Organization, Sir George Alleyne, they were pretty hostile to UNAIDS, and indeed to the whole subject of AIDS, which was perceived as a homosexual problem and thus essentially deviant. Many also opposed condom promotion in their country.

  But at around 11 A.M. there was a commotion at the door and who was there? The Commandante! Arriving unplanned, he was peering around, roaring, “Donde està Peter?” Fidel looked at me and said, “Hah. You didn’t comb your hair. When did you get up?” Then he burst into a long, impromptu speech about AIDS—how important it was, and how the one guy who knew all about the epidemic and what to do about it was me. I think perhaps he had forgotten the name of UNAIDS, because he called it “el programa de Peter,” which was pretty funny. It broke the ice with many ministers, because, even if most if not all in the room did not share the political views of the Commandante, they seemed to respect him—possibly because of Cuba’s impressive track record in health and biomedical research.

  After that I visited Cuba several times, and we set up a number of programs for technical cooperation and training. The epidemiology of HIV in the country was complex, with both heterosexual and homosexual transmission. One day I visited a school in Mazantas, a provincial capital. After a standard presentation on AIDS by ten-year-old children, one little girl stood up—in the presence of the provincial governor and the secretary of the Communist Party, both men—and said to me, “You know, Doctor, why we’re having this problem of AIDS?”

  I said no I didn’t really, and I would very much like to hear her opinion of it. She said, “All the men here are bisexual!” Everybody roared with laughter.

  I sometimes tried to discuss human rights issues with Fidel. During one of my trips, it was reported that 70 opponents had been jailed for up to 27 years, so I twice raised the issue. That did not go too well. Still, he remained very amenable to me personally, and to UNAIDS. At a South Summit in April 2000 Fidel told over 50 presidents that they should act against AIDS and that UNAIDS was the place to go for help. He introduced me to several African leaders, democrats and autocrats, including Robert Mugabe of Zimbabwe. And, incidentally, Cuba relaxed the sanatorium regulation. Nowadays, if a Cuban is found to be HIV positive, he or she is compelled to attend six months of training on safe sex practices.

  ON JULY 13, 1999, Larry Altman of The New York Times published an interview of me in his weekly “Doctor’s World.” The title was “In Africa, a Deadly Silence About AIDS Is Lifting.” Few people in the AIDS world believed me at the time, but from my numerous and intense country visits, I felt that something had started moving. The spread of HIV was slowing down—in just a few countries, sure, but I felt it had begun. And I felt a great part of this was attributable to leadership at various levels in those countries.

  Nearly all leaders—most obviously in Africa, but also elsewhere—were guilty of very excessive delays and denial about the HIV epidemic. In Uganda, Yoweri Museveni, a robust, plain-speaking farmer-soldier, was one exception; another was Abdou Diouf, in Senegal, who corralled the Catholic Church and Islamic religious leaders into an active and intelligent prevention program. In Botswana, where by 2000 in excess of 30 percent of adults had tested positive for HIV, President Festus Mogae resolutely took personal leadership over the AIDS response. He was a soft-spoken former civil servant, democratically elected, and he held his whole cabinet accountable for what they were doing on AIDS. He was open to international partnerships, in particular with US institutions such as Harvard, the University of Pennsylvania, and the Centers for Disease Control. Mogae was not an easy man to convince, and he often asked numerous and probing questions, but once he felt that something was the right thing to do, he went for it. I remember a meeting with him in 2007, together with half his Cabinet and Tachi Yamada, then president of Global Health at the Bill & Melinda Gates Foundation, and Ann Veneman, the executive director of UNICEF. We presented the results of studies showing that male circumcision can reduce the risk of men acquiring HIV by 50 percent. Thi
s was a tough challenge for a country where men are not circumcised. We went over all the issues, and there was no conclusion at the end of the meeting, but male circumcision later became national policy. Equally important, over 85 percent of AIDS patients in Botswana now receive antiretroviral treatment. This is one of the highest rates in the world, better than in several high-income countries. The result of sound leadership, good management, and international collaboration.

  In Rwanda, President Paul Kagame struck me as one of the most impressive people I’ve met: his intelligence was not showy but it was sharp and clear, and very strategic. I was one of the first high-ranking UN officials to meet him in Kigali after the 1994 genocide. It was delicate, given the failure of the UN peacekeeping mission and the UN Security Council (along with all other world powers) to prevent and halt the genocide of around 800,000 people. Nonetheless, what had been scheduled as a 30-minute courtesy meeting went on for several hours.

  Kagame received me in a sports shirt in his simple residence, which was heavily guarded by several circles of security. I asked for his strategic advice, and he asked a number of thoughtful questions before speaking up. We agreed to continue the process of jointly thinking things through, and he agreed to discuss AIDS issues with his colleagues in the region. His wife Janet, an elegant psychologist, became the driving force of the Organization of African First Ladies against HIV/AIDS; this group was active in several countries in the first decade of 2000, helping greatly to increase the visibility of the epidemic.

  Kagame had put Dr. Agnes Binagwaho in charge of the Rwandan AIDS program. Agnes was an energetic pediatrician from the Rwandan diaspora in Europe, and she was a former student of mine, which made me very proud. She organized the AIDS response as a successful military operation, but with major involvement of community groups such as HIV-positive widows who had survived the genocide. I met with several of them: all had been raped during the genocide and probably became infected with HIV at that time. Many were also pregnant, and thus would be raising babies conceived by a rapist and killer, often the man who had killed their husband or older children. It created huge mental turmoil just to think about their situation. We made sure that they had access to antiretroviral drugs, and Jonathan Turgovnik—a photographer from Newsweek who was traveling with me through East Africa—since created a foundation to provide education for these often stigmatized children, and published a moving book Intended Consequences: Rwandan Children Born of Rape.