AIDS
Overwhelming Public Health
It is a merciful God who doesn’t allow us to see the future.
—Brendon Phibbs, World War II surgeon, The Other Side of Time (1987)
For decades, the public health community has faced previously unknown diseases—on average, a new one every year. Legionnaires’ disease, Ebola virus, Lassa fever, green monkey disease, toxic shock—the list continues. The first cases of AIDS might have been simply one more addition to that list but for two things. First, it was not the discovery of an old, but previously unrecognized, disease. AIDS turned out to be a new human disease. Second, the outbreak was not limited or small. It became a pandemic that shook the foundations of public health, science, immunology, economics, development, and politics—indeed, all of society.
Many have told this story. This is not an attempt to document AIDS but rather to tell a few of the stories I observed personally.
The beginning was muted: an MMWR report on June 5, 1981, of five men who had been treated for Pneumocystis carinii pneumonia (1). All of these cases were laboratory confirmed, and two were fatal. This was an unusual diagnosis for young, healthy people. The only link seemed to be that they were gay.
Within days of the MMWR publication, reports came in from other hospitals of a similar disease. New York City and San Francisco were especially involved, and the spectrum became clearer. The patients were suffering from a variety of opportunistic infections as the result of a compromised immune system. This was a disease that was attacking the immune system, the traditional defense mechanism our bodies use to protect us from foreign organisms. In addition, some of the patients were suffering from Kaposi’s sarcoma, a tumor known in Africa but relatively rare in this country.
The CDC response was unprecedented, and Paul Wiesner, director of the Sexually Transmitted Disease Program, was one of its heroes. He immediately assigned investigators to characterize and understand the new syndrome. The ensuing investigation quickly surpassed what the CDC had invested in the Legionnaires’ disease investigation five years earlier. I mention this because later some accused the government of responding slowly because the patients were predominantly homosexuals. The erroneous conclusion that we had responded slowly was based on following budget figures without realizing that it takes some years for the authorization and appropriation of funds for new projects to become obvious in budget documents. What the CDC did is what it has always done with a newly recognized disease: use existing budget lines in the offices of epidemiology, venereal diseases, laboratory sciences, and the EIS.
As these CDC investigators became immersed in the outbreak, they had no idea of the magnitude of suffering and death about to be revealed. They had no idea it would take several years to release a definitive statement on prevention of this disease, that it would be shown to be a virus that infected with some efficiency, that it had a remarkably long incubation period, and that it would contaminate the blood supply of health facilities around the world. Nor could CDC investigators know then that it would take two decades to develop therapy and three decades to see the first cure. A third of a century later, there is still no vaccine. CDC AIDS investigators also could not know then that for some of them it would be the focus of their entire professional lives. No one would have imagined almost 600,000 Americans dying—and another 1.2 million infected—in the next thirty years from this disease.
A second hero, Dr. Jim Curran, was appointed as the head of a unit focusing exclusively on the new entity. He was blessed with a deputy, Dr. Harold Jaffe, who was unflappable in his pursuit of truth.
The opportunistic infections AIDS patients were exhibiting made sense if the patients had a compromised immune system. The occurrence of Kaposi’s sarcoma was different. This is a tumor characterized by nodules, bumps, or raised portions that might be red, purple, brown, or black. They are found on the skin but spread to the mouth and gastrointestinal and respiratory tracts. They can be slow growing or explosive in growth. They cause physical and mental suffering and often progress to death.
Because Kaposi’s sarcoma did not fit into the category of opportunistic infections and was thus puzzling, Curran organized a Kaposi’s Sarcoma and Opportunistic Infections Task Force in 1981 to explore what was known about this condition. Clarity was not apparent for thirteen years, until 1994, when a viral cause was discovered for the condition. Only then could it be seen that it fit with other opportunistic conditions, made worse with a compromised immune system.
The Kaposi’s task force involved the most prominent investigators of this rare condition from around the world. I had been taught in medical school to put the accent on the “o” in pronouncing Kaposi and so that is how I pronounced it when welcoming the group and thanking them for the service they were about to give. When I finished, one participant said we should start by getting the pronunciation correct. He said it was pronounced with the emphasis on the first syllable, the Kap. He went on to say that Dr. Kaposi actually pronounced it KA′-pa-she, but that it did not really matter since his name was actually Cohen. While some stories say he changed his name to hide his Jewish origins to gain admission to the University of Vienna, he told a different story. He said he changed his name to avoid confusion with five other Cohen faculty members. In any case, he first described the condition in 1872.
Curran and his team were overwhelmed. The numbers of AIDS cases continued to grow, and it became increasingly clear this was a fatal disease. It was a shock to face the fact that all patients might die once symptoms began. The team quickly developed case definitions and modified the definitions as more information became available. The CDC summarized the findings on an ongoing basis and predicted that the clinical cases identified were a small tip of a very large iceberg.
Within a year of the first report, the MMWR carried an article of a cluster of nineteen cases in Los Angeles (2). It became clearer that sexual transmission between gay men was a significant route of transmission of this agent. Although no agent had been identified, investigators were increasingly certain that they were dealing with a virus.
By August 1983, the task force was comfortable in publishing what they knew about risk factors. A case-control study of gay men with Kaposi’s or Pneumocystis pneumonia, as compared to gay men without the disease, showed risk factors included a larger number of male sex partners (median of 61 per year versus 27 for controls), contact with feces during sex, and a higher incidence of syphilis and hepatitis. The findings were published in the Annals of Internal Medicine in August 1983 (3). A March 1984 diagram of sexual contact between cases showed a remarkable amount of spread of this disease from a single index case (4).
Sexual contacts among homosexual men with AIDS. Circle = AIDS patient. Lines connecting circles = sexual exposures. Indicated city or state is place of residence of a patient at the time of diagnosis (FL = Florida; GA = Georgia; LA = Los Angeles; NJ = New Jersey; NY = New York; PA = Pennsylvania; SF = San Francisco; TX = Texas). Abbreviations: 0 = patient zero (described in text); KS = Kaposi’s sarcoma; OI = opportunistic infection; PCP = Pneumocystis pneumonia. Redrawn from 1984 American Journal of Medicine
While the investigators were increasingly convinced of a viral cause of the disease, some were concerned this might be a toxin, an environmental agent, or the result of drug use by patients. The above pictorial provided a strong case for an infectious agent that moved quickly between geographic locations.
Every day seemed to bring more sad news on numbers involved, potential dangers in transmission, and the frightening lethality of the disease. One of the hardest days was when it became clear that the agent was spreading to patients with hemophilia A. This group had a history of heartache best known because of European royalty afflicted with the condition. It is caused by an X-linked recessive gene that results in bleeding due to insufficient factor VIII production, usually in males. Factor VIII is an important ingredient in the clotting mechanism. In those with insufficient factor VIII, minor bumps and bruises may lead to serious problems, such as bleeding into joints. Internal bleeding was a frequent cause of death.
Until the twentieth century, little could be done for these patients. (The cause of the disease was thought to be fragile blood vessels, rather than a clotting defect.) In 1937, two doctors, Patek and Taylor, found that they could control the bleeding by giving a substance they isolated from the plasma of other people. In the 1950s, whole blood was often used. By the 1960s, however, Judith Pool had discovered a way to precipitate factor VIII from plasma. For the first time, large numbers of patients could be treated to prevent bleeding. Soon a freeze-dried product revolutionized treatment.
The problem was that the products were derived from pools of plasma collected from large numbers of donors. Anywhere from 1,000 to many thousands of donors contributed to each lot of factor VIII. It would not take much to contaminate the entire supply of factor VIII. Hemophiliacs would die without the administration of factor VIII, but now it was clear they could also die if they took factor VIII.
Until this time, arguments still raged on the cause of AIDS. With the diagnosis of AIDS in hemophiliacs, CDC investigators were convinced this was a virus.
The CDC summarized information on the first three hemophilia cases in the July 16, 1982, MMWR (5) a little over a year after the first AIDS article. At the beginning of that week, a conference sponsored by the Mt. Sinai School of Medicine was held in New York City. This was to be a chance for all the various theories on the origin of AIDS to be presented, although the main debate would be on whether it was a virus or a toxin. Jim Curran and I attended that meeting and presented the CDC findings on patients with hemophilia. Jim recalls that as a memorable point in the virus story because the other theories on the origin of the disease lost much of their credibility with that finding.
Scientists, of course, often have different perspectives. However, a system exists for following evidence, and soon most scientists reach agreement. But not all. Peter Duesberg, at the University of California, Berkeley, has consistently denied that HIV is the cause of AIDS. He sees HIV as a harmless virus and the real problem as long-term drug use and the use of antiretroviral drugs. Reviewers of his articles concluded he had a right to dissent but that he was selective in the use of literature and therefore his opinion was not credible.
Usually such dissent is valuable because it causes others to relook at their conclusions. Sometimes it can be deadly. When Duesberg served on an advisory panel to President Thabo Mbeki of South Africa, it resulted in a disaster in that country, as Mbeki failed to provide antiretroviral drugs and thousands of South Africans died of AIDS. It is a sobering reminder to all that there are consequences to misunderstanding and misjudging science. In clinical medicine, one way to redress errors is through malpractice procedures. Public health and political malpractice lack an effective corrective approach. The result is that blatant malpractice is excused as a difference of opinion.
As soon as the CDC had identified the risk to persons with hemophilia, we knew blood transfusions would pose a problem. It came to pass, but, as with factor VIII, we had no way to screen blood donors. Initial efforts at protecting the blood supply were aimed at discouraging donors in high-risk groups. Gay men were in that group, but a higher-than-expected incidence of AIDS had also been shown in people from Haiti. There was considerable pushback from the gay community and from Haitian political leaders to this recommendation. Even the blood banks were reluctant to implement such policies.
On March 4, 1983, before a virus had been isolated, a landmark article was published in the MMWR. It was entitled “Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Interagency Recommendations” (6). What is remarkable is that without the isolation of a virus, the report showed the power of epidemiology. It provided information on the risk factors associated with sexual practices and the risk of contact with body fluids. Indeed, it contained sufficient information to actually stop the AIDS epidemic if it would be possible to alter human behavior. But that task proved too difficult.
Conclusions in the article (6):
Two years after the first reports, thousands of cases of AIDS had been reported in the United States, and the best guesses were that this disease was caused by a virus spread through sexual activity, especially by gay men, and by exposure to body fluids, including blood products. It was to be a year before a virus was isolated and reported in the literature. Yet solid public health work had already identified the prevention procedures required.
The Pasteur Institute Discovers the AIDS Virus
Science was rapidly closing in on finding the virus involved. The Pasteur Institute in Paris underwent an expansion in 1972 to include a new unit for the study of viruses that cause cancer. Luc Montagnier became the director, and soon after the first reports, he found himself focused on finding the virus that caused AIDS. By the fall of 1982, some of the scientists working with the institute had become convinced that AIDS was caused by a virus of African origin that infected T-4 cells. On October 5, 1982, Jacques Leibowitch from Raymond Poincaré University Hospital gave a seminar on the “Retroviral Hypothesis in AIDS.”
Meanwhile, at NIH in the United States, the lab of Robert Gallo had been working on a virus called human T-cell lymphotropic virus (HTLV), types I and II. These were known to cause cancers in humans, and there was speculation that they were also involved with AIDS.
It was clear there was a race between NIH and the Pasteur Institute regarding which one would be first to isolate a virus. On February 2, 1983, Montagnier had a letter hand-carried to Robert Gallo at NIH regarding his finding of a virus, which they later found to be different from the virus isolated by Gallo. Montagnier’s group published their results on May 20, 1983, in Science (7). Great confusion persisted regarding Gallo’s HTLV-I and II viruses and whether they were the same as the French virus. A September meeting at Cold Spring Harbor, New York, attempted to sort out the issue, but US researchers were scornful of the French results. The proceedings, published nine months later, described an HTLV-III virus that had not been mentioned at the meeting itself. After the fact, a new virus was being introduced from NIH. Could this be an independent isolation of an AIDS virus? Had the two labs finished the race in a dead heat with both having isolated the new virus?
In early 1984, a virologist shared with me his belief that the HTLV-III virus isolated by the Americans was actually Montagnier’s virus. Having no way to confirm this myself, I took the information to my supervisor, Dr. Ed Brandt, assistant secretary of health in the Public Health Service. His response was that he would see what he could learn but not to worry. His comment was, “Science ultimately settles these issues.”
On April 24, 1984, shortly after I left as director of the CDC, the secretary of Health and Human Services, Margaret Heckler, held a press conference with Ed Brandt, Robert Gallo, and others to announce that scientists at NIH had isolated the AIDS virus, the HTLV-III virus. She added that they would soon have a test for testing blood products and within two years federal laboratories would produce a vaccine. Gallo described his new virus in the May 4, 1984, issue of Science (8).
In December 1983, the Pasteur Institute applied for a US patent for a diagnostic kit based on the French virus. Five months later, NIH applied for a patent for Gallo’s AIDS diagnostic kit. This NIH patent was issued a year later, while the Pasteur Institute was still waiting for its patent. NIH could now receive income from the use of its diagnostic kits.
The AIDS virus changes so quickly that significant variations are seen in the virus even as the virus spreads from one patient to the next. Yet later analysis found the NIH HTLV-III virus and the French virus to be essentially identical. My informant had been correct. The conclusion of many was that the NIH HTLV-III strain might have been accidentally grown from the French virus.
To fast-forward, in 2008, Luc Montagnier and Françoise Barré-Sinoussi were awarded the Nobel Prize in Physiology or Medicine for discovery of the AIDS virus. Ed Brandt was correct that science will eventually sort out these difficulties.
Jim Curran turned out to be a master at dealing with various groups. He was comfortable working with basic scientists and quickly learned their vocabulary. He was comfortable with clinicians, having spent time as one. And he was comfortable with academics. But perhaps most important, he was comfortable with patients and the gay community. The latter was frustrated with the pace of the scientific response to AIDS, perhaps not realizing how different this organism was from any previously encountered and understandably suspicious of a government that had always made them feel second class. And they were watching their friends die. Many became bitter. Some became militant and shrill in their demands. But somehow Jim Curran did not lose his way, and the gay community began to trust him.
AIDS in Africa: A “Radio Disease”
The next disconcerting development was the rapid spread of AIDS in Africa and other countries around the world. In Africa, the disease was spread through heterosexual contact in most cases, and it spread with awesome speed. As in the United States, a risk factor was an increased number of sexual partners. In Africa, success in most fields led to increased wealth and the means of paying for or attracting many sexual partners. Therefore, young successful men appeared to have higher rates of both partners and HIV than less affluent men. The professions were becoming decimated. It was difficult to produce teachers, medical personnel, church workers, pilots, or others fast enough to refill the gaps left by those who were dying.
But the most crucial factor in Africa came down to the lack of power for women. A cursory look might give a different impression. The casual observer sees that women do the farmwork, gather wood for cooking, cook, work and trade in markets, and get children ready for school. Women appear to be the backbone of the society. But these tasks describe who does the work, not who has the power.
This lack of power extends to decisions on sex. Women often have no power in determining when they will have sex. They often have no power to insist on faithfulness, and they are often coerced into sex. Likewise, young women often need to trade sexual favors simply to get school fees. Prostitutes have difficulty insisting on the use of condoms, or they will not get a customer. Women’s lack of power has fueled the AIDS epidemic in Africa.
African countries also found it difficult to admit the numbers of cases they were seeing lest it hurt tourism. The 1980s and 1990s were times of severe depression in African health. All of the gains in immunization and reductions in infant mortality and deaths from other diseases seemed to be mocked by the increased deaths and suffering from AIDS.
In 1987, Dr. Seth Berkley, supported by a Rockefeller Foundation grant, was working in Uganda on child health projects for the Task Force for Child Survival. He sent a letter saying that he had just completed an analysis of HIV rates in pregnant women in prenatal clinics in Uganda and was documenting an alarming increase. He asked if he could get permission to pursue this problem. The Task Force for Child Survival, which I now directed, urged him to do so.
A year later, in August 1988, President Carter was scheduled to visit Uganda. President Museveni, the head of state, asked for briefings from various people as part of his preparation for the meeting. Dr. Berkley briefed him on a variety of topics and, in the process, showed him the graph on the increase in HIV rates in pregnant women. The numbers seemed to be increasing almost by the month. President Museveni was shocked but said, “If I know this, everyone should know it.” He proceeded to share the information and even had the graph published. This was the beginning of transparency in African countries, allowing them freedom to report the truth about AIDS.
India was not experiencing the same numbers of AIDS cases as Africa, at least if one could believe the reports. One day, Vulimiri Ramalingaswami, a friend for many years and one of the most revered scientists in India, sought my advice. He said he had been asked to suggest a response for India if it were to have a problem with AIDS. He asked for suggestions. I replied, as I had often in public health cases, that we should figure out first how to get to the truth. My suggestion was to test prostitutes on the New Delhi to Calcutta highway. He looked absolutely startled and asked me what I knew. I knew nothing, but said I would start with the places I expected the virus would first appear, and based on African experience, prostitutes and truck drivers were a potent opportunity for virus transmission. He then confided that the reason he was being asked for a plan was that a small sample of prostitutes on that very highway had already tested positive for AIDS.
In India, as in Africa, AIDS spread quickly from the population of sex workers, to truck drivers, to the wives of truck drivers, and then into the general population.
Dr. Seth Berkley later worked with AIDS for the Rockefeller Foundation. He and the foundation concluded that the ultimate answer to the problem would be a preventive vaccine. Although the difficulties were far greater than implied by Margaret Heckler’s announcement that a vaccine would be developed in two years, the Rockefeller Foundation, with a grant of $10 million, started the International AIDS Vaccine Institute (IAVI). Dr. Berkley became the president. The Gates Foundation had great confidence in the Rockefeller Foundation and later pledged $100 million to IAVI. The institute organized incredible scientific efforts that helped elucidate how the virus operated and subdued the immune system response.
Some were concerned that the Gates grant would cause others to withhold vaccine development funds; the argument was that the Gates Foundation would now be the chief funder. But that is not the way people operate. An informant at NIH told me (although he said he would always deny the story if asked) that NIH scientists held a meeting after the Gates grant was announced. They concluded that they could not afford to have an outside funder solve the problem of an AIDS vaccine, and they asked what it would take to make sure NIH stayed in the lead for developing the vaccine. This led to a more robust program at NIH than would have developed in the absence of the Gates grant. Research is augmented by competition, and developments have been faster than if Rockefeller and Gates had not entered the field.
Upon leaving the CDC, I went to the Carter Center, where the Carters had embraced global health programs in immunization, mental health, Guinea worm eradication, trachoma, onchocerciasis (river blindness), and agriculture and its impact on nutrition, as well as their work in democracy and free elections. While there, the executive director of AID Atlanta, Sandy Thurman, and her coworker Nancy Paris, asked me whether I would become chair of the AID Atlanta board. This suddenly gave me experience with AIDS at the ground level. The courage of these young men who continued to work at improving social services and support activities for others as they faced their own death sentence was both inspiring and depressing.
A year after beginning the work with AID Atlanta, I found myself in an uncomfortable social situation with community leaders that included stories at the expense of the gay community. I felt compelled to share my experience and asked the group what it was that so scared the straight community? Furthermore, did anyone actually think being gay was a choice? Observing the prejudice expressed by society, why would people choose that position? My opinion was that people were gay because of genetics, and that attempts to live in opposition to one’s genetics led to even more discomfort than if persons were open about their sexual preferences. It escaped my understanding how people could be so confident of their views that they would torment others.
At any rate, the experience of working with AIDS-infected persons was profound. Human nature is baffling, and how people under the same threat of the virus can fail to embrace one another is one of those mysteries. But the conflict between the gay community and the black community has continued to fester throughout the AIDS epidemic.
Good news and bad news continued to alternate. In 1987, the first drugs capable of inhibiting HIV appeared. The virus requires reverse transcriptase to replicate, and these new drugs inhibited this essential protein. The drugs did not cure the disease but made AIDS a truly chronic disease.
In a sense, AIDS already was a chronic disease. The immune system was almost, but not quite, capable of stopping the infection. This determined virus would produce billions of new viruses every day; the immune system would attack and disable almost that number every day. But the immune system was just shy of being a match for HIV. Over the days, weeks, and months, virus production would slowly exceed virus destruction. In a healthy person, it might take five years, ten years, or even fifteen years before the immune system had to acknowledge it simply could not keep up, and the virus would slowly take over the body. The reverse-transcriptase inhibitors made the contest more even, and the virus could not overwhelm the immune system. What had been a chronic disease over a decade might change into a chronic disease over many decades.
But resistance to the new drug was likely to develop. Fortunately, in 1995, protease inhibitors became available. These antiviral drugs also inhibited an essential protein. Combining the two inhibitors provided another boost to a patient’s immune system. Two years later, a different type of reverse-transcriptase inhibitor became available. In 2003, a fourth new drug became available to inhibit entry of the virus into cells. And in 2007, integrase inhibitors provided an additional attack on virus multiplication.
Initially, it appeared that these medications were simply too expensive to be used in the developing world, but the George W. Bush administration made a commitment to provide funds to greatly increase treatment in poor countries. It has changed the course of history. An increasing percentage of AIDS patients around the world are being treated and that has reduced the amount of virus circulating in treated people. This decreases their ability to transmit the infection to others. Patients have returned to work, and family structures again have a chance to be repaired. This is a positive and long-lasting legacy of President George W. Bush.
The science will advance. Human foibles remain. Treatment is a stopgap measure. The real answer to AIDS is to stop transmission of the virus rather than to attack it patient by patient. Work on a vaccine must continue. Prevention must be enhanced. The treatment of AIDS patients would seem to be a wonderful place to start with massive education programs on how to avoid transmission; promoting condoms for every sexual encounter; delaying sexual activity; and positive incentives, such as educational opportunities for young people. Instead, in most countries, treatment has consumed public health people and resources, and the focus on prevention is lost.
A second foible has been the elevation of religious beliefs to thwart good science. The US PEPFAR (President’s Emergency Plan for AIDS Relief) program emphasized abstinence and fidelity and discouraged condom use. No one can fault the first two, but human experience is that to discourage condoms is simply to wish that people were as good as you want them to be. Wishes do not protect the wives of men who have sex outside of marriage without using condoms. Hopes do not prevent a child from becoming an orphan because their father did not use a condom.
I went to hear the head of PEPFAR when he spoke in Seattle, Washington. I was impressed by his zeal, his grasp of managerial issues, and his desire to improve the world. But he was unyielding in his emphasis on fidelity, abstinence, and unavailability of condoms. I was surprised later to learn he was stepping down. Days later I learned that his name had been found on the D.C. Madam’s list.
This was certainly a step back from the years of Dr. C. Everett Koop. He became surgeon general under President Reagan with great fanfare from the religious right because of his strong stand on abortion. But Dr. Koop became an enigma for the Republican Party because he listened to science. He became a supporter of the AIDS program when others in the administration wanted to punish the victims. He listened before making up his mind.
Two final stories. In January 2000, while new drugs were changing the outlook for AIDS in the United States, the future was bleak for Africa. I was now working with the Bill & Melinda Gates Foundation, and it hosted a meeting in Seattle in January 2000 to discuss AIDS with other foundations. The question was whether we collectively could see a way forward that warranted investments by these foundations.
Some background to the meeting is important. In 1987, Merck’s chief executive officer, Dr. Roy Vagelos, had offered the drug Mectizan for the treatment of onchocerciasis. He had asked the Task Force for Child Survival to administer the program against river blindness, and it had been a great success. At the twenty-fifth anniversary celebration, in October 2012, the company reported that it had given 1 billion free treatments of Mectizan for the program in Africa and Central America.
A decade after the launch of that program, the successor to Vagelos, Ray Gilmartin, asked a small group to advise the company on AIDS. He said Merck was so pleased with the outcome of the Mectizan program that it now wanted to see how it could help with AIDS. The group advised Merck to avoid piecemeal approaches but rather to ask the question of how modern science could be applied under African conditions of high disease rates, malnutrition, urban crowding, and poverty to solve AIDS problems. In late 1999, the group was called back to see the results. Guy Macdonald of Merck had developed a comprehensive plan that was exciting. I asked him to present his plan to the Seattle AIDS meeting, and he agreed.
The day before the meeting was to start, the group planning the meeting learned that I had invited Dr. Macdonald to present, and they absolutely refused to allow it on the basis that a for-profit company would have commercial interests and would likely have little to offer. Knowing Macdonald was already on a plane, I pressed the case, arguing that it could not possibly hurt us to hear the perspective of a corporation that had examined closely what could be done. After hours of debate, the group capitulated as a favor to me. The next day Guy Macdonald made a stunning presentation. It made them bolder in developing possible approaches.
At the end of the second day, the group had decided on six ideas to pursue that provided some possibilities for “light at the end of the long, dark AIDS tunnel” in developing countries. Each foundation agreed to pursue what it could, and I was asked to present the six ideas to Bill Gates for possible support from his foundation.
The meeting with Bill Gates did not start well. He first wanted to discuss a grant proposal that had been sent to him that seemed to encapsulate every problem that he wanted to avoid in the future. He told us that he was not interested in proposals that involved bottomless pits, especially when it would be hard to measure progress. He did not want to obligate the foundation to do things that should be done by government and other groups. He was reluctant to invest in projects that, once started, would require continuing support, perhaps for a long time.
As he continued to enumerate the things he did not want to see, it struck me that all of them were part of the six proposals I wanted to discuss. In addition, the AIDS arena would be a new area for the Gates Foundation, with many implications.
But my lack of flexibility destined me to describe the meeting on AIDS with the six specific proposals that had resulted. I had gone through the first five proposals when he suddenly stopped me to ask how much money we were proposing. I told him that our first estimate was $50 million a year for ten years. His immediate response was, “It will take a lot more than that!” With that, I was emboldened to go to idea number six, which had to do with AIDS orphans in Africa. If anything was a bottomless pit with implications for future funding, this was it. His response was, “You can’t worry about AIDS in Africa without worrying about the orphans.” He told us to proceed with all six ideas. This eventually led to the recruitment of Merck in a collaborative program in Botswana, the recruitment of Helene Gayle from the CDC, microbicide efforts, the Hope for African Children Initiative (HACI), and other AIDS projects.
On the way back to our foundation offices, I asked Bill Gates Sr.—Bill’s father, a lawyer, and the first president of the Gates Foundation—to help me understand what the two of us had just witnessed. He said, “Of course, we all have our inconsistencies. Bill knows what he wants, which is a return on his investment, but when faced with the human condition, he will always try to make the right choice.” This is the story I cherish most from my days as an advisor at the Gates Foundation.
One result of the decision to enter the fight against AIDS in January 2000 was that the Gates Foundation and Merck agreed to a joint program in Botswana to apply modern science under African conditions. Our first visit to Botswana was sobering. Over one-third of adults were HIV positive. The president of Botswana said that unless something dramatic was done they would no longer have a country.
AIDS was called a “radio disease” because while it was discussed on the radio, it was not discussed in ordinary conversation. Even at the increasing number of funerals, no mention was made of what everyone knew was the actual cause of death. The number of orphans was increasing. The impact on schools, medical facilities, and church programs was obvious. But discussion of the cause was muted. The only organization I encountered that would actually talk about AIDS openly was Hospice, a program resulting from the St. Christopher’s Hospice, started by Dame Cicely Saunders in 1967, which inspired offshoots. This incredible organization has expanded around the world in the last two-thirds of a century and brings comfort to those dying and to their families.
We made rounds at a hospital in Botswana, and the reality hit home. Almost every patient had AIDS; yet, that diagnosis was never mentioned. Patients were said to have tuberculosis (which they did), cancer, and malnutrition but never AIDS.
At the completion of rounds, we went to a room to discuss what we had seen. I asked the medical officer, “How do you get yourself up in the morning? What do you do for your mental and emotional health?” He stared at me for such a long time that I regretted having asked the question and was seeking a way out. But then tears flowed down his face, and he said, “I have never told anyone this before.” Then, in front of his staff and the visitors he said, “I was born one of four sons. My three brothers have died of AIDS. I don’t have a choice.”
The Gates Foundation, Merck, Harvard University, the government of Botswana, and others formed a coalition. Many things happened at once. Testing stations were developed so that people could know their HIV status. Treatment programs were established and quickly expanded. Being tested now made sense because a positive diagnosis would be followed by treatment. Education programs were launched, including a clever radio soap opera, sponsored by local actors and funded by USAID resources, that discussed AIDS frankly. Soon most people in the country were listening to the program and following the advice given.
A return to the country six years later revealed dramatic results. People were being tested and were receiving treatment. The shroud of secrecy had been lifted. On a visit to one of the testing facilities, I encountered a couple from the University of Botswana who had come for testing. They had agreed to be tested before becoming intimate. This type of discussion would have been beyond belief five years earlier.
Perhaps the most telling statistic comes from Luke Nkinsi. Dr. Nkinsi is an activist, a highly motivated African physician who has represented the Gates Foundation in the Botswana AIDS program. He reported that HIV positivity in newborns in Botswana had dropped from 40 percent when the program started to 4 percent within five years. These newborns can now develop, go to school, have careers, and raise families rather than exist only to occupy an early grave. Better health in Africa does not have to wait for development. It can become the engine of development.