AIDS at 30: Hard lessons and hope
Thirty years after the first official reports about HIV/AIDS, we look back on the human devastation and forward to a changed social landscape. The infection has killed more people so far than has any other discrete epidemic, except for the Great Influenza pandemic of 1918–1919 and the Black Death of the Middle Ages. It has destroyed individuals, families, and societies. Yet HIV/AIDS has also raised public health to new levels of science, conscience, and innovation. Review editor Madeline Drexler asked distinguished Harvard School of Public Health faculty and alumni where the epidemic has taken us and where it is headed.
Q: HIV/AIDS has been one of the most catastrophic epidemics in all of history. Despite this tragic human toll, are there ways in which HIV/AIDS changed public health for the better?
Fineberg: Yes, because it was the beginning of a new understanding of global health—a commonality of risk and burden. The U.S. as a wealthy country and Uganda as a developing country: both faced the same disease problem, though in different ways. At the World Health Organization, Jonathan Mann, who would later join the School as founding director of the FXB Center, also helped define a new way of thinking about public health. He tried desperately to mobilize the world, awaken the world, to this looming disaster. He repeatedly described the inseparable nature of health and human rights.
Marlink: The epidemic toppled myths in public health. People said we couldn’t do anything about the epidemic in developing countries—we’ve shown that’s not true. People then said AIDS would pull resources away from malaria or childhood diseases and maternal health—we’ve shown that AIDS has dramatically increased total public health funding in Africa, including in these areas. AIDS has also brought about unprecedented international cooperation, such as the creation of UNAIDS and of the Global Fund to Fight AIDS, Tuberculosis and Malaria, among others.
Walensky: Investments that have benefited HIV/AIDS patients have improved health care in general. What is generally underestimated is what those resources have done for health care infrastructure, worker training, protocol development, clinical care sites, preventing children from being orphaned, preventing mother-to-child transmission, and making drinking water safe.
Essex: I compare our response to HIV/AIDS to President Nixon’s war on cancer in 1972, which opened the floodgates for money on research. Rates of cancer deaths didn’t go down for a long time, but what did happen was a revolution in molecular biology. That revolution led to things that we wouldn’t have anticipated: biotechnology, the rejuvenation of pharmaceutical companies, a renewed emphasis on applied research. That’s where we are today with AIDS vaccines. Whatever knowledge is gained from a war on AIDS will help us make vaccines against cancer, heart disease, and other diseases.
AIDS Roundtable Participants
A world leader in virology, Essex was one of the first scientists to suspect that a retrovirus was the agent causing AIDS. His research group identified gp120, a protein on the surface of HIV that provides the basis for diagnostic tests and epidemiologic monitoring as well as a vaccine target. Essex is the co-author of Saturday Is for Funerals, a portrayal of the AIDS epidemic in Botswana.
Dean of HSPH from 1984 through 1997, Fineberg is an eminent scholar in the fields of health policy and medical decision making. During his deanship at HSPH, he forged collaborations across the University and its teaching hospitals to address the growing HIV/AIDS epidemic.
A virologist and expert in the pathogenesis and molecular epidemiology of HIV in Africa, Kanki has led AIDS research programs in Senegal for more than 20 years. She established and directed the AIDS Prevention Initiative in Nigeria, funded by the Bill & Melinda Gates Foundation. Since 2004, Kanki has led the Harvard President’s Emerging Plan for AIDS Relief (PEPFAR).
As executive director of the Harvard School of Public Health AIDS Initiative, Marlink has led the evaluation and coordination of AIDS research and training programs for developing nations, and has organized policy and educational programs to address the treatment needs of HIV/AIDS patients.
Ojikutu, MPH ’03, an infectious disease physician at Massachusetts General Hospital, is a senior HIV/AIDS advisor with the John Snow Research and Training Institute. Her research interests center on disparities in health care access, both domestically and abroad, and she has advocated on behalf of underserved patients in resource-poor settings.
Walensky, MPH ’01, is an infectious disease physician at Brigham and Women’s Hospital and Massachusetts General Hospital. Since 1998, she has been a member of the Cost Effectiveness of Preventing AIDS Complications (CEPAC) group at Massachusetts General Hospital.
Q: Let’s talk about specific responses to the epidemic. First, what are some things that have gone right?
Walensky: I was on the clinical AIDS service in Baltimore in early 1996 when the first drug cocktail was FDA-approved. Literally, during my residency, HIV-infected patients went from universally dying to living. I probably won’t witness anything like that again in my career. Today, amazingly, there are more antiretroviral drugs for HIV/AIDS—even in its short history—than for all other viruses combined.
Marlink: When studies such as the one from the School’s Roger Shapiro showed last year in Botswana that antiretroviral drug combinations given to pregnant and breast-feeding women prevented 99 percent of mothers from transmitting HIV to their infants, the WHO quickly changed its prevention of mother-to-child transmission of HIV guidelines, even before the studies were published. The bottom line is: We now have the science and the drugs to virtually eliminate pediatric AIDS.
Ojikutu: Initially, as drugs were rolled out internationally, this was an emergency: Let’s get in there, get people drugs, and stop this from becoming a situation where people inevitably die. There were times in those early days when I was in clinics in sub-Saharan Africa and wondered if scale-up of treatment would be sustainable. Even today, the future of treatment programs that have been built is highly uncertain. But when you look at the numbers who are currently receiving care, though we have by no means reached universal access, the progress is noteworthy.
Q: Many things also went terribly wrong. Looking back, how would you have rerun the world’s response to AIDS since 1981?
Fineberg: In the United States, the epidemic first became apparent in gay men. Ideally, political leaders, public health authorities, and enlightened gay leaders would have been much more aggressive early in recognizing and working together to control transmission. This idea that public health measures were anti-gay measures—we had to get over that sooner. All of the distractions about condoms, because they carry other connotations, were shameful, because lives were at stake. And we had a president who early on refrained from uttering the word “AIDS.”
Essex: National officials should have mobilized a lot more research funds between ’83 and ’88. The epidemic could have been controlled better and fewer people would have been infected. There wasn’t nearly enough money early on to develop good drugs.
Kanki: We needed to invest early on in Africa, where the epidemic was most severe. But international and U.S. leaders discouraged it. The term that development people use is “absorptive capacity”—the ability of a country to receive aid and use it effectively. There was—probably still is—a pejorative view that the absorptive capacity of developing countries is limited. If you can get past that misconception, which is so damaging, then the sky’s the limit.
Ojikutu: If I had been old enough to be involved in the early epidemic in the U.S., I would have looked at this as an opportunity to educate and to destigmatize human behavior, particularly sexual behavior. When I think about what often stops people from accessing HIV testing and treatment and from addressing HIV prevention comprehensively, it is the stigma that surrounds the associated behaviors, particularly homosexuality. If we had addressed those negative perceptions then, HIV would be less taboo today.
Q: Typically in this epidemic, the affluent West is portrayed as having brought modern public health strategies to the epidemic in Africa. But what can the West learn from Africa?
Ojikutu: One of the things that I noticed almost immediately, as a clinician, was that across Africa there is great emphasis on adherence to treatment. There are fewer treatment regimens available and fewer options if resistance develops. As a result, treatment programs stringently focus on adherence counseling and support, including health literacy, which isn’t necessarily the case in the U.S. Patients with whom I interacted in sub-Saharan Africa oftentimes knew more about HIV treatment than patients do here.
Essex: I had direct contact with the president of Botswana during most of the epidemic. He was the first leader in southern Africa to recognize that AIDS required presidential-level leadership. By the late 1990s, he promised that he’d never make a speech to anybody about anything without talking about AIDS—and he meant it. He talked to trade groups, farmers, everybody, and he always said something about AIDS. Botswana still leads Africa in the proportion of AIDS patients who get treated, the proportion of pregnant women who get checked and receive drugs to prevent infant infections, and the proportion of adults who get tested to see if they’re infected.
Q: Recent scientific articles and news stories have touted the promise of pre-exposure prophylaxis, or PrEP, with a combination drug that appears to protect high-risk individuals from infection. Will PrEP change the trajectory of the epidemic?
Walensky: PrEP is exciting. When the first trial results were presented last summer in Vienna, the scientists received a standing ovation. I’ve never seen that at a research conference, because it has been relatively rare that a prevention has been documented to work. PrEP also demonstrated the capacity to empower women in some settings. But the efficacy of PrEP also leads to questions: Will resources for preventing HIV infections divert resources away from treating those who are already HIV-infected?
Kanki: If PrEP works and prevents infections, it will be wonderful—and in the long run it also could save money. The real cost of antiretroviral therapy is health care infrastructure, doctors, nurses, pharmacists, and labs. Effective prevention—whether it be PrEP, male circumcision, or vaccines—will decrease the burden of those needing treatment and will take advantage of the investments in infrastructure and trained health care workers.
Essex: The fundamental consideration with PrEP is the expense. You could argue that you should give it selectively to, say, commercial sex workers or high-risk injection drug users or men who have sex with men. But in places like southern Africa, it’s a generalized epidemic, meaning that every young person who wants to have children has some risk, and that risk goes on for decades. You can’t give all of them drugs all the time.
Q: Last fall, we saw a spate of news stories about promising developments in prevention, including male circumcision and female microbicides. What do you make of these advances? And do you see other promising strategies?
Essex: Male circumcision is definitely a positive development and seems to offer protection to at least 55 percent to 60 percent of adult males. It should be used and it is cost-effective. But you can’t force people to do it, and I think there aren’t good numbers yet about what fraction of adult males will agree to it.
Marlink: The vaginal microbicide studies represented two breakthroughs. One, it worked. It’s not a 100 percent barrier, but medically it works. The other breakthrough is that it’s a female-controlled way of implementing an HIV prevention method. Also, in Tanzania and Botswana, HSPH researchers have shown that certain multivitamin preparations can prolong the life of somebody living with HIV and delay the time before a person needs antiretroviral drugs. Even the rate of dying from the infection was reduced in these studies by giving this vitamin intervention.
33 million people are living today with HIV/AIDS.
An estimated 2.6 million were newly infected in 2009, and nearly two million died.
Nearly 17 million children were orphaned in 2009 by AIDS.
About two-thirds of people worldwide infected with HIV live in Sub-Saharan Africa.
In 2009, 1 in 20 adults were infected in Sub-Saharan Africa, more than 1 in 4 in Swaziland.
In the U.S., more than one million people are living with HIV, and more than 18,000 die each year.
Among racial/ethnic groups, African Americans face the most severe burden of HIV and AIDS in the U.S., representing 12 percent of the population but accounting for 46 percent of people living with HIV.
Q: PEPFAR—the President’s Emergency Plan for AIDS Relief—established by George W. Bush, provided $15 billion between 2003 and 2008 to fight the global HIV/AIDS epidemic. What were the major achievements of this program?
Marlink: In his State of the Union address in January 2003, President Bush used the B word: “billion,” when announcing the funding for the new international AIDS effort of the U.S. government. It wasn’t the M word, for “million,” it was the B word! Everyone who was watching television dropped their jaws. In one day, money wasn’t an issue anymore. Today, the scale-up in numbers of people being treated for HIV/AIDS is still continuing in a linear rise.
Kanki: The goal from the beginning was to quickly provide care and treatment to the many in need. The program also built infrastructure and trained thousands of health care workers. As the program moves into its second phase of country ownership, our involvement will decrease. But we have developed enough relationships with people and built enough infrastructure so that at the end of PEPFAR—if you had an NIH grant to look at neurologic tumors in Africa, or you had research opportunities for malaria or TB—you have a functional lab and trained scientists. You’re ready to go.
Walensky: When I went to South Africa in 2008, I went to a clinic in a township outside Cape Town. My colleagues took me on a tour of their “container”—it looked like a little mobile home, and it had all these PEPFAR insignias. Inside that container was the capacity for laboratory tests, CD4 count, viral load, and standard hematologies and chemistries. Because that clinic had those tests, its patients were doing better. The possibility and the potential were so inspiring.
Q: Yet in the past few years, PEPFAR has been flat funded. What will be the impact?
Kanki: If the goal of PEPFAR was to treat all those who are in need, then we’re at the first quarter or halftime. This was not the time for the program to be flat funded. The problem is, they want us to achieve the same target as the previous year. But if you added 15,000 new patients in the interim, you have a bigger patient base, and flat funding forces you to decrease your cost per patient. At our very-high-volume clinics, nurses and doctors see huge numbers of people—200 to 300 a day. They can’t continue that. Flat funding will cause burnout in staff, decrease the quality of care provided, and even deny care and treatment to those still waiting.
Walensky: If treatment funding flattens, there is the clear danger of rewinding the clock. If people come to a clinic and they can’t get antiretrovirals, they will likely not return. And if treatment is unavailable, the motivation for testing plummets and more people will get infected. In 2007, we published a study analyzing the impact if PEPFAR weren’t authorized from 2007 to 2012. We compared rapid-growth funding to constant, or flat, funding. We found that with flat funding, there would be 1.2 million additional AIDS-related deaths over the subsequent five years in South Africa alone.
Q:Why don’t we have an HIV vaccine?
Essex: The greatest difficulty is the fact that HIV mutates rapidly and evolves immediately when any immune response is thrown at it. It mutates so rapidly that a virus that’s present in a single individual is, a few weeks later, different from the one that was present a few weeks before. New approaches are being tested and evaluated at a laboratory level, but it will be at least 10 or 15 years before any of them are available as a vaccine in people.
Fineberg: If you are imagining a vaccine like a polio vaccine—one that brings the possibility of eradication into view—that seems unlikely. The most likely scenario is either a treatment or preventive that is partially effective.
Kanki: I think we’ll get a vaccine that will work. I don’t think it will be perfect, but the minute we can sink our teeth into something that works a little bit, that will help. It would have to be at least 50 percent effective in a clinical IIB trial, which would demonstrate efficacy with lowered expectations for the percentage of people protected.
Walensky: It’s true, there is no HIV vaccine; but there’s also no vaccine for hypertension or diabetes, and yet people live well with these chronic diseases. Many of the HIV-infected patients I’m seeing right now as inpatients are well controlled on their treatment regimens. They do not regularly miss doses and they’re in the hospital for hip replacement, for dialysis catheters, or for some HIV-unrelated reason. Yes, a vaccine is a noble and worthy pursuit, but we must be patient and recognize there is so much we can do right now.
Q: According to the U.S. Department of Health and Human Services, African American males have almost eight times the rate of AIDS that white males do, and African American females have more than 22 times the rate of white females. Why are there such vast social disparities in the disease?
Ojikutu: One of the fallacies driving racial and ethnic disparities in HIV in this country is that it’s about lack of condom usage or about black people having a higher number of sexual partners. But disparities are not solely about individual-level behaviors—they reflect a bigger problem. There is a higher background prevalence of HIV and other sexually transmitted diseases within our communities. You have stigma and discrimination against sexual behaviors, particularly against homosexuality. In a study published by the CDC, more than one-half of HIV-infected black gay men were unaware that they were infected. You also have poverty, which leads to poor access to health care and to residential segregation, which means that people who are at higher risk are in one place, creating a more concentrated sexual network. And with the extraordinarily high rate of incarceration, there are fewer available black men in the community, so relationships are fractured and there may be a higher rate of multiple concurrent partnerships. It is these complex, population-level issues that make addressing racial and ethnic disparities so challenging.
Q: Looking forward, what’s going right today?
Essex: The approach of using drugs to prevent mother-to-infant transmission hasn’t adequately been tested to see how it might stop infected adults from transmitting to other adults. I think it will work. In the southern African epidemic, there’s a subset of people, about 20 to 25 percent, who have an extended acute phase and are infecting others for much longer. We think the most cost-effective strategy would focus on that subset of individuals.
Walensky: HIV screening is key to success, both for receiving timely care and protecting others from infection. Guidelines have recently promoted more testing and resulted in more resources being devoted to testing. Today in the U.S., once people are offered an HIV test, they generally take it. We’re also being creative about how and where we’re testing. For example, among the responses to the focused epidemic in Washington, D.C. are efforts to offer HIV screening at the department of motor vehicles. In Texas, they screen everybody who walks into the emergency room. We are making testing easy.
Ojikutu: Today in the U.S., we have a National AIDS Strategy, which may lead to more effort and energy being placed on the domestic agenda. A lot of that came from advocacy efforts from minority providers, advocates, and others who said, “This is ridiculous. We have been putting together national strategies for South Africa, for Botswana—for every country, basically—but not for the United States. Yet we have communities with infection rates just as high as some parts of Africa.”
Marlink: I’m hopeful about where treatment is heading. If you were to find out in the near future that you were living with HIV, you would likely go on treatment immediately. In the years to come, I see a world where all people living with HIV should have access to medications that would dramatically reduce their chances of infecting other people. And if everyone who is living with HIV is on treatment, infections dramatically drop and the epidemic turns the corner. Ethically, logistically, financially, we need to plan for that world.
Q: What will AIDS look like in another 30 years?
Essex: I’m concerned about the capacity of the virus to evolve. Some of the viruses already in Africa are easier to transmit than the ones in the U.S. If those viruses spread around the world and infect people, it could cause higher rates of infection.
Fineberg: What it will take to turn around the epidemic are breakthroughs in the science. A more available, safer, less expensive treatment that actually interrupts transmission. A reasonably effective vaccine. That would accelerate the downturn.
Ojikutu: What I see 30 years from now is going to depend on many of the revolutionary advances that have occurred this past year: vaginal microbicides, pre-exposure prophylaxis. If those types of interventions are interwoven with a comprehensive strategy to address population-level drivers of infection, and we simultaneously build stable health care infrastructure in the developing world, that’s going to change the epidemic.
Q: UNAIDS recently called for a revolution in “HIV prevention politics, policies, and practices.” In your view, what would such a revolution look like?
Fineberg: The biggest revolution would be a revolution that genuinely acted on the belief that every life had the same value as every other life. We would change the way we support countries, moving resources from armament shipments to injection equipment.
Ojikutu: We would have a grander vision of global health. It isn’t about emergency responses, it isn’t about dropping medications and equipment and supplies into a country. The revolution would establish stable, well-resourced primary health care systems throughout the developing world, so that prevention and treatment of chronic diseases like HIV can be available to all.
Essex: Rhetoric like the word “revolution” sometimes seems unrealistic, but it has benefits. I remember when the World Health Organization proposed the “3 by 5” program, in which 3 million infections would be prevented by 2005. They didn’t get there—they missed it by years. But if they hadn’t pushed that to the extent that they did, we’d be five years behind where we are now.
Q: What have been the unique contributions of HSPH during the AIDS epidemic?
Kanki: With the School’s PEPFAR work, we learned a tremendous amount about scaling up a large, complex program in three different countries in Africa. If a clinic was going from, say, 35 patients to 350 patients a day by the end of the year, we learned to ask: Do they have a waiting room that can handle that? Do they have enough lab staff? Is there a pharmacy with locks and bars on the windows and refrigerators that can keep pediatric drugs cool? You learn how goods come into the country, how utilities work, whether the water supply is reliable. We helped our colleagues determine if the programs were working, how to improve them within the confines of the local environment, hopefully, how to maximize their impact for the public health of the populations served. And over the past three decades, we have built up long-term partnerships with a number of countries in Africa and Asia—Senegal, Botswana, Tanzania, Nigeria, Thailand. Though these might have started out as research-based projects, they expanded into multidisciplinary public health programs that included training, policy development, and health system strengthening.
Fineberg: When I was Dean, I felt keenly that it was important to champion a University-wide initiative. It was the only way I could see to bring the full force of Harvard’s capacities onto what I believed to be the dominating health problem of our age. Although public health always considers itself multidisciplinary, it required deeper levels of expertise and breadth than any one faculty represented, even public health. But getting people together on this required a constant stirring of the pot.
Essex: Being at a school of public health gave me more insight and more latitude to move rapidly in the research than if I had been in a more restricted institution. One of the things that I am grateful for here is the value of interdisciplinary research, and an appreciation and respect for the talents of colleagues who have very different skills. At the very earliest stages of the epidemic, some of the people who were most interested and sympathetic and creative were the biostatisticians.
Marlink: The Harvard School of Public Health AIDS Initiative has had three “rules of engagement” with our partnerships in other countries. The first rule is that the partnership has to benefit the people of the country involved. The second is that the partnership is not about a particular project or research question, but about a handshake and a relationship that’s going to continue beyond any one project. The third—and most important rule—is that we are not in charge. We get a lot more done when we are guided by the people who live the problem every day.