Millions of People Living with HIV Are Alive, Thanks to a 20-Year Public Health Effort
After two decades, a massive U.S. governmental effort has reached a new milestone in its battle to defang the global HIV/AIDS epidemic: the Centers for Disease Control and Prevention announced earlier this month that, by 2022, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) had provided lifesaving antiretroviral therapy treatment to more than 20 million people around the world with HIV—a 300-fold increase from the 66,500 people the program treated in 2004.
PEPFAR’s progress has shown that halting a deadly and intimidating global epidemic isn’t impossible. Since the George W. Bush administration launched the ambitious plan in 2003, PEPFAR has funneled more than $110 billion into HIV/AIDS treatment and resources. It’s the largest concerted public health effort by any one nation to tackle a single disease and has been credited for changing the worldwide course of HIV/AIDS, a devastating illness that was once considered terminal.
The year PEPFAR was announced, the World Health Organization reported an estimated 40 million people were living with HIV. Countries in sub-Saharan Africa, where the epidemic was the most severe, had the majority of cases, with an estimated 26.6 million people infected. Most of Africa’s health care facilities and universities lacked resources for the testing, drug administration or patient monitoring needed to care for so many with HIV/AIDS. For people in many parts of the continent, it simply was not a survivable disease, says Phyllis Kanki, a professor of immunology and infectious diseases at Harvard University.
“We previously have had global health problems where you have diseases that affect all populations…. But HIV was a more dramatic scourge of a pathogen because it was killing so many people, and there was no therapy,” says Kanki, who helped start the AIDS Prevention Initiative in Nigeria in 2000 and served as principal investigator for Harvard’s PEPFAR program from 2004 to 2013. “I think PEPFAR has provided the solution to what was not a livable and survivable disease for scores of people who never would have had access to [HIV drugs] in the past. I think that was the big change and why it will be heralded as a huge global health success story.”
Scientific American spoke with Kanki to understand how PEPFAR helped make HIV/AIDS a livable disease, how the program could inform other global health crises and what stubborn barriers remain to ending the global HIV/AIDS epidemic.[An edited transcript of the interview follows.]
What was the state of the HIV/AIDS epidemic in Africa in 2003?
In many parts of Africa, they had already been describing cases in the mid- or late 1980s. It was already appreciated at that time that there were parts of the continent that were heavily burdened, such as Botswana, South Africa—those places were already documenting 20 to 25 percent infection in the general population.
I think there was a general recognition that, unlike the U.S. and Europe, where HIV infection was really seen in certain risk populations (and at that time it was probably men who have sex with men and intravenous drug users), in sub-Saharan Africa, it was a much more heterosexual, young adult population. So it was harder to target who really was at risk for being infected. That was a real fear, because you didn’t really have good programs and infrastructure set up to rapidly diagnose these people and put them on a complex therapy—even if that therapy was available to you.
There was a lot of variability on the continent, but generally there weren’t many programs that were accessible to people to receive drugs if they found out that they were HIV infected. People who had the means would find out that they were positive, and then they might have to pay huge sums of money to get drugs, go to Europe or to the U.S. [for treatment]. But that was certainly just a small proportion of people. There were no [known] government programs that were readily set up to help people. And that was particularly true in places that were hardest-hit and had what was already known to be the largest proportion of individuals that were infected.
Why was PEPFAR started?
As a minimum standard of care, you have to have a good diagnosis; you have to be able to bring in the drugs; the drugs all have to be there; you have to give it to them every month; you have to have a system so that you know you’re giving it to them; and then you have to have a way of monitoring them. And none of that was in place.
One of the reasons why it was such a challenge for people in international health to try to grapple with HIV was because it was such a complicated disease. [It’s] hard to diagnose. You can’t treat somebody if you don’t know that they have it. Then once you put somebody on treatment, it’s a treatment that’s lifelong. At the time [patients] were having to take six to 12 pills once, twice, three times a day. Taking the pills is one thing, but it’s absolutely critical that they take it every day because if they stopped taking it, the viruses that are still there will come back, and they can get sick and could die. Some pills require refrigeration. Some pills you couldn’t take unless you already had a meal. In some of our clinics, if populations were food-insecure, we had to provide food. And you have to monitor people with lab tests that most of the labs or university hospital [facilities] didn’t have the equipment for. Who was going to pay for these tests? You couldn’t ask [patients] to pay, and you couldn’t ask labs that didn’t have the equipment to run the test. We also had problems in our populations in Africa, where you have a lot of comorbidity—another disease that you see with HIV such as tuberculosis (TB) that’s a real killer all by itself. You had to deal with managing two different therapies for two different complex diseases.
Around that time the government [of Nigeria] had gone out and tried to purchase generic drugs in India to provide treatment for some of the first HIV-infected individuals, recognizing they had a huge population that was already infected. They started the government program, but it was very small. Governments [in Africa] had already tried to begin these programs, but PEPFAR really was a shot in the arm. We were able to use PEPFAR funds to really bolster what was just the beginning of U.S. government programs.
Today PEPFAR works in more than 50 countries, providing health care infrastructure and resources—including antiretroviral therapy (ART)—to stymie the spread of HIV. What is ART, and how has it transformed HIV/AIDS care?
The virus itself enters a key cell that’s important in defending your body from outside pathogens, and that cell is the lymphocyte. It’s one of your white blood cells that circulates through your body and in certain organs. It’s a key player in protecting you. So one of the sort of villainous properties of the virus is that it integrates; it inserts its genetic material into yours. And that’s why an infection with a retrovirus like HIV is forever—because you can’t get rid of it.
There are different classes of antiretroviral therapy drugs that operate on different parts of the virus’s life cycle. Some will basically stop the virus from before it integrates. Other drugs inhibit the integration step. Others block the entry of the virus.
When we started out, we used to show slides of people with two hands together with a pile of pills. Currently, it’s probably one pill a day—that’s a single pill that includes multiple drugs. Those pills are much more effective than what we were able to give out before. So things have really changed in 20 years.
What’s on the horizon for HIV/AIDS treatments?
There’s PrEP (preexposure prophylaxis), which is: if you’re uninfected, this pill will help prevent you from being infected from another individual. There are different modalities and ways we would use these very effective therapies to try to limit spread or to decrease virus so that you don’t get sick. There’s a continued effort to develop a vaccine.
There’s a lot of research that’s being done on what’s called the HIV cure [a few people reportedly have been cleared of HIV or considered to be in long-term remission after receiving HIV-resistant stem cells] and different ways that researchers think that they can try to get rid of [the disease]. But certainly that’s still a work in progress, I’d say.
What disparities and stigma still exist around HIV/AIDS? What efforts are there to identify and provide access to treatment to those who need it?
There’s stigma with a lot of different diseases, but we see in Africa that people don’t want to be known to have HIV infection because maybe it carries the stigma that they had multiple sex partners or they had used drugs. Even just that you’re not healthy—that can be a stigma in certain populations.
We’ve been involved with projects for men who have sex with men in Nigeria, and that’s a very stigmatized population. It’s very hard for them to identify and find supportive clinics that are almost sort of quasi-underground, to be able to get access to the care. That’s partially because there are laws in those countries that are against their sexual orientation.
In Africa we have the largest number of kids who were infected at birth. Those kids are growing up, and many of them are stigmatized—they’re 12 years old, and they’ve just been told by their mother that they’ve been taking pills, and those pills are for HIV. They don’t want it to be known by their classmates or other people in the community that that’s what they have because it reflects badly on themselves and also on their family. So then they don’t want to go to the clinic and be seen. We do have a lot of problems with adolescents, when they’re just grappling with a lot of other issues in their life and having to deal with the fact that they’re supposed to go to a clinic every month that identifies them as having HIV. They’re going to have to do that for the rest of their life.
What do you think are the major next steps to reaching PEPFAR’s goal of ending the HIV/AIDS epidemic as public health threat by 2030? How realistic is it?
A lot of these international goals are sort of pie in the sky, but you have to keep going. You can’t stop when you’re 10 feet from the goal line. In many countries, they’re very close [to providing treatment to every person with HIV]. I think Botswana, for example, is very close. They have a large population that’s infected, but they’ve been very successful in identifying and treating all of the people who are affected. And … the goals to prevent and to treat every pregnant woman who’s positive can really make a difference in getting rid of infant HIV infection because that’s a starting point.
What lessons from PEPFAR could be applied to other epidemics or disease-prevention strategies?
It was really a brand-new approach to a global health problem. I think PEPFAR was different because it committed such a large amount of money for one disease, primarily in parts of the world that were most affected—[those that] were the poorest parts that would not have been able to do anything at that time with what was available. PEPFAR was really the ambulance with the medicine. The size of it and the scope of it were so huge. Those of us who were working in Africa at the time just were sort of amazed at the idea that a U.S. program would commit so much money to people in Africa. We were happy about it, of course. We had never seen anything like it. So it was really a tremendous opportunity, and no one knew whether it would really work. And 20 years later we see that it did. It really made a huge difference for health care overall, not just HIV care, in all of these countries.
AIDS is caused by one virus, but it affects other things such as TB. So I do think that the PEPFAR program provided a lot of important lessons for how we could deal with the Global TB Program. It did bolster the infrastructure that was available for TB, and it certainly improved care for that. Many of the labs that were developed for providing HIV services have been used for things such as Ebola and [mpox]. So I think all of that has a trickle-down effect of improving health care services overall. And that’s why I think that PEPFAR will be recognized for many additional benefits that are outside of just dealing with the horrible issue of the HIV pandemic and AIDS. There were many other health care problems that were addressed on the side. We’re in a better position to deal with HIV than we were in 2004, for sure.