Q&A: Chip Lyons on PEPFAR's 'great leap into the unknown' of controlling HIV and AIDS

WASHINGTON — In 1981, Elizabeth Glaser contracted HIV from a blood transfusion she received while giving birth to her daughter Ariel. Glaser unknowingly transmitted the virus through breastfeeding to her daughter, who died in 1988. That same year, Glaser co-founded the Pediatric AIDS Foundation. Her mission at the time was straightforward — to save her son Jake’s life, who was born HIV-positive in 1984.

The Elizabeth Glaser Pediatric AIDS Foundation — as it was renamed in Glaser’s honor after her death — is now a major implementer of global HIV treatment and prevention services, and partner to initiatives including the President’s Emergency Plan for AIDS Relief, which President George W. Bush launched 15 years ago.

Devex spoke to Charles, or Chip, Lyons, president and chief executive officer of EGPAF, about how PEPFAR changed the calculus for organizations working to stem the tide of AIDS, and how the initiative has evolved in the 15 years since its founding.

Here is the interview, edited for length and clarity.

PEPFAR was obviously significant in terms of the raw amount of resources it brought to the global fight against HIV and AIDS. Do you think there’s something unique about PEPFAR that has carried additional significance for the way the United States engages in global health?

I do think PEPFAR is different, and it was purposefully different from the outset. It’s what was characterized as a whole-of-government approach.

From EGPAF’s point of view, we were already working on the ground. We were bringing preventive treatment to HIV-positive mothers in Kenya and Uganda and had data to show dramatically reduced vertical transmissions, at that time, with Nevirapine. When PEPFAR came in, it really was just an opportunity to scale what was possible across many more countries.

The fact that today, 15 years later, in a country like the Democratic Republic of the Congo, we’re working with the Department of Defense, we’re working with Centers for Disease Control and Prevention, the U.S. Agency for International Development — the fact that it was an all-of-government approach with multiple agencies is a key founding principle of PEPFAR. That obviously  broadened the understanding of the epidemic within the U.S. government. It broadened the sense of ownership of the response to the pandemic, as well as the responsibility of the U.S. That was a key, key thing.

I think the “P” of PEPFAR, the first “P,” is vital. It’s different when the president says, “This is what I want to achieve. I expect you to do x, y, and z.” I don’t know that there’s been that kind of sustained presidential leadership across three presidencies. For sure, it’s never happened in global health, or in terms of U.S. government leadership.

In order for PEPFAR to achieve its objectives, there were many things that had to be developed and delivered, and still have to be.

There’s been a strengthening of health systems as a result of PEPFAR. There are multiple examples of countries that, with such substantial resources, were able to increase their human resources for health. Training is a major component of PEPFAR, just to build the capacity within health systems. PEPFAR was transformational, and I think that transformation transcends just HIV and AIDS.

People don’t live lives defined solely by whether you have the virus or not. Health systems also exist to deliver, draw people in, retain them in care and in service, draw them back. That’s critical for HIV and AIDS, but touching patients and clients in the health system in general has been dramatically strengthened by virtue of PEPFAR. It’s impact has gone well beyond just an HIV and AIDS question.

What was it like to be working on HIV and AIDS before there was this mobilization of U.S. government support?

People were doing what they were able to do pre-PEPFAR, but there are countless stories from the doctors who were on the front lines, including in San Francisco and other places, of the endless funerals — traffic jams all day in African cities because of multiple funerals, the casket-making businesses, etc. It was completely dire, with the apocryphal stories of, “Was Swaziland going to continue to exist,” given that productive adults were dying at the rates that they were. There was a hopelessness, replaced by excitement and a possibility.

I always say to members of congress who were part of those early days: It was a presidential initiative, and yes it was grounded in the best thinking at the time from the architects, the people who were around the table at the time. But it was also a great leap into the unknown.

It’s because of that heavy investment that more research was done, better antiretrovirals were developed, etc. The pivot, the radical change as a result of PEPFAR, that’s just a matter of the public health record. It has been transformational. People took big risks and big bets on it. When you do that, you can fail spectacularly, or you can succeed spectacularly. And PEPFAR has succeeded spectacularly, recognizing as everyone does, that PEPFAR is not done, and we haven’t controlled the epidemic. It’s so dramatically better. There are so many areas we can show dramatic improvement, but it is an epidemic.

The current PEPFAR strategy is about demonstrating epidemic control in the absence of a cure and a vaccine.

What we have to constantly talk about — it’s not just crossing a temporal finish line of 90-90-90, for example. We have to be talking about the sustainable control of the epidemic. Absent a cure and vaccine, people will continue to live their lives and have sex in whatever way they do — so there’s going to be a constant risk factor. Prevention needs a heavy emphasis, as well as getting people on treatment, which itself is a form of prevention.

Do you feel that PEPFAR has adapted, both to its own success and to the changing face of the epidemic, but also to the way that the challenges of infection have evolved? Or is this an initiative in need of an update?

I think PEPFAR is adapting in real time, in fact.

PEPFAR was an early proponent of using data and science to drive decisions. That has only increased at a steady, and virtually real-time rate. As we get down to population-level surveys, it’s down to site-level data about microepidemics. It is about targeted resources, not nationally, but to subnational geographies at the provincial district, or subdistrict level. It’s data that is driving those decisions.

There is an adaptive epidemic control strategy that PEPFAR released last September that targets countries that are moving with momentum toward epidemic control. PEPFAR is as much about results as anybody is, and where something isn’t working in a geography, or an approach, or a strategy, they adapt and move toward those things that demonstrate greater results.

There’s much more emphasis on adolescents and young women, again, derived from experience, evidence, and data in terms of infection rates and the context in which young women are growing up, the degree of violence and discrimination against young women. PEPFAR is adapting approaches to that.

If you go to any particular site, health care center, or even larger — women, pregnant women are there, but relatively few men. One study that EGPAF carried out recently on men’s responsibility was titled, “The co-authors of pregnancy.” Given their own infection rates, what is being done to draw more men into services to get tested and treated?

There’s work that EGPAF has done with CDC and USAID in Lesotho dedicated to men. It’s called a “men’s corner.” It’s basically a men’s clinic, and it’s showing dramatic success in terms of the number of male clients that are there and the number of them who are tested for the first time with positivity rates of 14, 15 percent. PEPFAR has jumped on that, to say, “this needs to be understood and replicated.”

If the broader question is, “is PEPFAR riding on the laurels of transformation to date and progress?,” the answer is, “no.” It’s recognizing the causes and sources of those transformations and those successes, but is as aware as anyone else that there are pockets of weakness.

There’s a slowing of the reduction of new infections, including of kids. There are cohorts that are not slowing, key populations and geographies, parts of Eastern Europe, and so on. PEPFAR is adapting and trying to focus resources and data to come up with more effective approaches to target those prevalence and incidence rates.

As you say, PEPFAR is a science- and data-driven initiative, but it’s also an initiative that exists in a political context. Has PEPFAR had free reign to allocate resources based on what the science says?

I do believe they have, because the science and the data make the arguments. Where there’s maybe uncertainty about where PEPFAR’s going to invest is less about the microlevel, and more about the macrolevel. Is funding going to be retained at an appropriate, high level?

PEPFAR exists in a political context, and the U.S. government’s budget is the ultimate definition of politics. You choose what to do, and what not to do, and it’s expressed in the budget, and the budget is a political document. Everybody recognizes that. It’s a dynamic between an administration and a congress.

We have already seen in the third, Trump administration that there have been proposed reductions in funding for PEPFAR. We’ve also seen the level of bipartisan understanding of and commitment to PEPFAR, which I think matches or exceeds virtually any other international initiative by the U.S. government. In that dynamic, Congress has come back in to say, “we’re not cutting PEPFAR.” Quite publicly, Senator Graham and others believe that PEPFAR resources should be increased, given the challenges that we face and given the accomplishments so far.

PEPFAR, including in the latest [country operational plan] process, has shown that it is focused on maximizing results from the resources that are provided, and not being overly distracted by the dynamic between the White House and Congress. At the end of the fiscal year 2018, it is at the same level of funding as FY17, and that’s reflective of two administrations with very different world views. We’re in the process of FY19, and certainly both parties, including the Republican appropriations and foreign relations leadership, which are very strong proponents of PEPFAR. That matters in the aggregate.

If there are proposed funding cuts, you have to trim sails a little bit.

Epidemic control focused on 13 countries necessarily also leads to the question of, “well what’s being left out if you focus the strategy this way in these countries.” There are countries not a part of that priority list and focus. You can’t control the epidemic globally, if it isn’t also controlled in Nigeria. I don’t believe you can control the epidemic if you don’t succeed in ending AIDS in children.

There’s a danger in a political context of focusing so much that you leave out either key cohorts or key geographies. I worry more about that in the current political context than I do about whether investments are being made here or there.

The investments need to continue to be made, regardless of the political context in ending the epidemic in children, not just because everyone feels strongly about protecting innocent children from contracting the virus or developing AIDS, but the success of countries when they do achieve virtual elimination of mother-to-child transmission. That’s a huge signal to the country, to communities, to the public health system in a country. We focused on this, we achieved it, we can do this.

Ending AIDS in children isn’t by itself, of course, going to end or control the epidemic writ large. But it’s such a clear and possible step in the direction that we have committed to for 2030, of ending the pandemic as a public health crisis.

Ending AIDS in children is a milestone on the pathway to ending it as a public health crisis, and that’s something that Tony Fauci and others recognize that there’s no scientific obstacle to. It’s about political will. It’s about resources. It’s about the effective use of those resources. We have all sorts of data to show that, if we stay on this path, continue to invest, continue to improve and adapt, that is a public health milestone that’s possible and that’s necessary to achieve the larger goal of controlling the epidemic.