PEPFAR: Achieving an AIDS-Free Generation

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The President’s Emergency Plan for AIDS Relief (PEPFAR) is a program that was born from bipartisan legislation in 2003 under George W. Bush’s administration. It was the biggest global health investment for a single disease by any country in the world, and still is today. We sit down with Caitlin Horrigan from Planned Parenthood Federation of America to discuss the evolution of PEPFAR, the ways in which it has provided care for HIV/AIDS patients around the world, and the attacks it is now facing from the Trump administration.

In 2002, HIV/AIDS was the leading cause of death of people between the ages of 15 and 59. Fear, stigma, and misinformation, undermined work on HIV/AIDS and, while treatment options were available, they were available only in certain locations. Millions of people were needlessly dying due to lack of resources, and an HIV/AIDS diagnosis seemed to be a death sentence.

But in 2003, George W. Bush’s administration, with bipartisan support, established PEPFAR in order to address this public health emergency. It started as a $15 million five-year plan to combat HIV/AIDS, malaria, and tuberculosis on a global scale. Originally focused in fifteen countries, PEPFAR now impacts over forty. The program delivered necessary emergency care to those who needed it; bringing treatment to those with HIV/AIDS, preventing mother-to-child transmission, and helping build medical infrastructure in countries that lacked in HIV/AIDS prevention methods.

PEPFAR expanded even farther under the Obama administration- the global financial crisis heavily limited funding, but forced the administration to think outside the box in order to make programs more effective. Women and adolescent girls became a major focus of global health programs and PEPFAR in particular. The administration created the DREAMS (Determined, Resilient, Empowered, Aids-Free, Mentored and Safe) Initiative, a groundbreaking new initiative focusing on HIV/ADIS prevention for adolescent girls and young women mostly in sub-Saharan African countries in a cross-sectoral fashion. This program was desperately needed; 1,000 women and young girls are newly infected with HIV every day, and it is a disproportionate amount.

Since the transition into the Trump Pence administration, there have been dramatic cuts to global health at large, and this includes HIV/AIDS. Also affecting progress on HIV/AIDS the Trump Pence administration has been attacking issues that intersect with HIV/AIDS like sexual and reproductive health, emergency contraception, and sex education.

The Global Gag Rule used to only apply to family planning and reproductive and sexual health, but the administration has expanded it to apply to all of global health-- including HIV/AIDS (for more general information on the Global Gag Rule, check out episode five of RePROsFightBack). Providers are holding back on administering services that are needed due to confusion and fear. In Mozambique the International Planned Parenthood Association has lost about two thirds of their budget due to the expanded Global Gag Rule. The program supports about 500,000 people, including young people, who have HIV/AIDS or were newly diagnosed.

We can’t leave anyone behind in the HIV/AIDS community. If we truly want to achieve an AIDS –free generation, we can’t leave women and girls, LGBTQ+ populations, sex workers, people who use drugs behind. There’s no one-size-fits-all solution, but we have to find a solution to deliver. PEPFAR is the first step.

Links from this episode

PPFA on Twitter
PPFA on Facebook
Information on the Global HER Act- House
Information on the Global HER Act- Senate
AIDS 2018 Conference

Transcript

Jennie: Welcome to rePROs Fight Back a podcast on all things repro. I'm your host Jennie Wetter. In each episode, I'll be taking you to the front lines of the escalating fight over our sexual and reproductive health and rights at home and abroad. Each episode, I will be speaking with leaders who are fighting to protect our reproductive health and rights to ensure that no one's reproductive health depends on where they live. It's time for repros to fight back.

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Jennie: Welcome to rePROs Fight Back. On this week's episode, we're going to switch to cover global issues that we've kind of ignored for a little bit. Um, so this week we're going to talk about PEPFAR. Helping me dig into this topic, I'm super excited to have the amazing Caitlin Horrigan with Planned Parenthood Federation of America. Welcome Caitlin, and thank you for being here.

Caitlin: Thanks so much for having me, Jennie.

Jennie: Okay, so before we get into PEPFAR, um, I figured we should probably start with a little basic like what was HIV/AIDs, what was going on in 2003?

Caitlin: Yeah, absolutely. And I think that's such an important question because oftentimes I think we forget to reflect on where we've come from and we're so focused on the remaining work to be done that we forget that a lot of progress has been made, especially in the 15 years that have passed since PEPFAR was originally passed, as you mentioned in 20, 2003. So what did the global AIDS epidemic look like pre PEPFAR? I think the real hallmark was that there was a lack of access to treatment, and that really HIV and AIDs was viewed as a death sentence in so many parts of the world. And in fact, in 2002 it was the leading cause of death for people 15 to 59. So for a lot of people it was a death sentence. And I think then it was surrounded by a lot of fear, a lot of misinformation, a lot of misconceptions and a lot of stigma that really undermine the work. And it wasn't that there were no treatment options available, it just that they were unequally distributed. So in the mid 90s there were actually, um, viable treatment options, but it was just in some of the places hardest hit by the epidemic, like in sub Saharan Africa, they really weren't accessible at all. So the people who needed the most in resource low settings weren't getting the lifesaving medication they need. And we could talk in all sorts of numbers, I think about what else was happening at that time. But really for me the top line is, is that millions of people were needlessly dying when there are resources and things available that could save their lives. And that's why we so desperately needed PEPFAR.

Jennie: So what is PEPFAR?

Caitlin: Well first it's an acronym so I'll break down what that is since we live in way too many acronyms.

Jennie: Always good to remember that, I sometimes forget.

Caitlin: Yes, although it's a long one, so it's nice to have the short term. But it stands for President's Emergency Plan For AIDS Relief. And it was established in 2003 by then President George W. Bush. And really it was a five year vision with $15 billion to combat HIV and AIDS globally. And also tackle malaria and TB because those diseases were so interrelated with the epidemic. Um, so it was actually passed through bipartisan legislation, which sounds kind of novel these days with the State of Congress, but it was at the time the biggest, um, global health investment in a single disease by any country in the world. And in fact still is that today. And for the US, you know, we've long invested in global health, but this represents the, by far the biggest investment we've made. And in fact, in FY, fiscal year 2017, it represented 62% of our global health funding. So yeah, a huge chunk of how we're showing up in the world in terms of global health. I think it's exciting because not only was it started in a bipartisan fashion, but Congress has actually reauthorized, which sort of means reapproved it twice since its history. Again with broad bipartisan support, which again sounds so quaint and novel these days, but that was in 2008 and in 2013, they sort of reaffirmed their support for this and double down and in and continued the, the important work of the program. Um, and since it started, it started with about 15 countries, now works in over 40, so it's grown a lot since it originally started. And really sort of, um, harnesses a whole of government approach. So State Department is working with HHS, Department of Defense, Peace Corps, USAID to really have a holistic response to the crisis that the world was facing.

Jennie: So what was PEPFAR like under President Bush?

Caitlin: Yeah, it's a good question. I think PEPFAR has been strong in both Republican and Democratic administrations, but in different ways. Um, I think under President Bush, you know, we did see it was really in that emergency phase. So it was dealing with really bringing treatment to people who had never had treatment before. So we saw vast improvements in that area. We saw great improvements in things like preventing mother to child transmission, which was huge for women who are living with HIV and wanted to build families and have a healthier next generation. And I think, um, PEPFAR at that time was really building sort of a health system in places that didn't have a platform, which allowed for then, when there were new technologies, medical and scientific breakthroughs like voluntary male circumcision, which is a new HIV prevention tool to really have the infrastructure to deliver it on scale to all the people that needed it. Of course, at that time too, we didn't do as much as we could because of some bad policies that were in place that were shortsighted and really held back our progress. So under Bush, PEPFAR focused a lot on abstinence only programs, which might be familiar to the listeners because it sort of having a research of a moment now, and I know you've tackled that in previous episodes, but that was a real hallmark of the pepfar program and really did, especially young people a disservice by not providing them with the information that they needed to make healthy decisions and really to lead healthy lives. Despite even at that time there was tons of evidence that that wasn't effective. It's grown as people have analyzed PEPFAR. And then the other major policy setback I think from that time was there was what's known as a refusal provision, which allowed organizations to pick and choose what they felt comfortable providing and refuse to provide services even if they would save people's lives. And so that really held us back by placing sort of organizations, personal preferences above people that needed health care and services. So that was sort of what it looked like under Bush. Um, funding increased a lot. Treatment increased a lot, but we didn't do everything we could have because of some of these harmful policy restrictions.

Jennie: Bush was definitely before I got involved in repro health, so I was not as familiar with the refusals side. I, um, only knew about the abstinence side, so that's interesting.

Caitlin: Yeah. Yeah. And obviously there have been a lot of domestic refusals since. PEPFAR is kind of the worst one we have on the books. So it's kind of a model that has been tried to be replicated and a lot of domestic programs, um. It's sort of the worst of the worst out there. And sadly some of the most vulnerable people around the world have suffered because of it.

Jennie: So what did Obama change when he came into office?

Caitlin: Sure. Um, well, um, Obama was also a big supporter of PEPFAR. I think one of the challenges that he faces just when he was taking, I mean, he faced a lot of challenges um, but one of them related to this was the global financial crisis hit sort of just as he was taking into office. So while PEPFAR funding and sort of steadily increased through, you know, Congressional budget cycles up through the beginning of his administration, all of a sudden there was less funding available for everything but including PEPFAR. And so funding sort of flatlined. So I think one of the challenges that the Obama administration did a really great job as is thinking about how programs could be delivered more effectively since resources weren't expanding. And so two things I think his administration did, which really changed the game for PEPFAR. One was that women and girls were, became a major focus of foreign policy writ large but including PEPFAR. So they thought a lot more about what programs to meet women and girls need should look like within PEPFAR. And for far too long, I think they had been neglected. And as part of that they looked at integrating programs more. So you know, for a long time we've had like an HIV program here and a maternal health program somewhere else and a family planning program somewhere else. And it's the same person that needs all those services. And so the Obama administration worked really hard, it's still a work in progress I think, but to integrate those programs so that a person can go to one place and get more of their comprehensive needs met and don't have to wait in line and travel distances repeatedly get basic services including HIV and things like family planning.

Jennie: A really important point is talking about the financial crisis because I think so many people think of so many other implications of the financial crisis and a, it is definitely not one of the things that's talked about that when there was that government freeze that meant, you know, government spending really had to be thought about, um, on a smaller scale I guess, um, and how to fund these great programs that we are working on. And effectiveness then became a real uh, push.

Caitlin: Yeah, absolutely. It was sort of a moral imperative I think to how can we keep up the momentum but without just more money on the table.

Jennie: The Obama administration focused on women and girls. So one of the big programs they had under PEPFAR was the DREAMS initiative. Do you wanna tell us a little bit about that?

Caitlin: Sure. And we've got another acronym to discuss. Another good one. Um, so DREAMS stands for Determined, Resilient, Empowered, AIDs free, Mentored and Safe. So I'll continue to say DREAMS because that's a mouthful. So DREAMS was announced on World AIDs Day in 2014 and it was really a groundbreaking new initiative to focus on HIV prevention for adolescent girls and young women. And it originally focused in 10 sub Saharan African countries. And really tried to look at the evidence base for what these women and girls wanted and needed and took a cross sectorial approach. So not just thinking about health, but also like what are their education needs? Um, what are their needs as relates to poverty or gender based violence? How are they showing up in the world and what's holding them back? And so put forward a comprehensive set of core interventions, sort of banking on the idea of here are all the things we know work individually, what if we made sure a set of girls and young women got them all together? And the bet is is that their outcomes will be better. And it was really so key. Um, and I think sort of the North Star for the program was that there are a thousand women and young women and adolescent girls every day who are newly infected with HIV. Those numbers are staggering and it's disproportionate to for them, 74% of adolescents who are infected in sub Saharan Africa are girls. So there, yeah, they're really getting um, you know, infected and, and suffering the consequences in a way that their male peers aren't. So clearly the AIDs community has failed them to some degree. And DREAMS I think was sort of a signal of, okay, we're doubling down. We recognize that they're so key and we're not going to repeat the mistakes of the past.

Jennie: And so DREAMS is still around?

Caitlin: It's still around, but it's definitely one of the areas that we feel quite nervous about could be in jeopardy. Because, you know, when we talk about evidence-based approaches for adolescent girls and young women, especially in HIV prevention, that includes things like adolescent friendly, sexual and reproductive health services. It includes things like post violence care, which includes provision of PEP, emergency contraception. Um, it includes sex ed. And so these are things that are on the target and on the chopping block in this administration. So, you know, there's been great momentum just last year on World AIDs day, they announced some promising results from the first couple of years of the initiative where they did see dramatic decreases in the incidents for adolescent girls and young women and the target countries. And in fact they even had more countries saying, we want to adopt this model and approach. So it's something, uh, that we certainly hope doesn't go away, but we recognize that it could be vulnerable and are nervous about, um, it being subjected to the ideology ideology of this administration.

Jennie: Yes. So I think that brings us to the perpetual elephant in the room and most of these conversations, which is what has changed under the Trump/Pence administration?

Caitlin: Yeah, a lot has changed. Um, I think an early signal of the changes that we were going to see under Trump was during his first proposed budget and what we saw was really dramatic. Dramatic cuts to global health writ large, including HIV and AIDs. So while many of us may have expected, although it was devastating to see the zeroing out of international family planning, PEPFAR has been so bipartisan and so embraced by previous Republican administrations that it was really jarring to see also significant cuts to the PEPFAR program proposed. And in fact they were roundly sort of um, dismissed by even his Republican colleagues on the hill who called his budget dead on arrival and really spoke out against things like the cuts to PEPFAR as being, um, incompatible with sort of US values and interests. Um, but the message doesn't seem to have cut through because you know, one year later he proposed very similar budget cuts again. So, um, I think it's a real question mark on, um, where the Trump administration is focused on PEPFAR and of course with less resources, the one thing they've said is that they will maintain people who are currently on treatment will be maintained, which is critically important. Obviously something we support, but it leaves a lot of open itemed questions about you know, what happens to care and prevention, which are also critical pieces of an AIDs response. And what happens to people who are just finding out they're HIV positive? Is there treatment available for them? I think they really haven't answered for those questions.

Jennie: Um, one other thing that has really changed under the Trump administration was the reimposition and expansion of the global gag rule. Um, and before we get into how it could impact PEPFAR, maybe we could do like a quick breakdown, um, on what the global gag rule is for listeners who aren't familiar. But listeners who want to learn more should definitely check out episode five where we covered the global gag rule in more detail. But we're just going to do like a quick down and dirty, what is it?

Caitlin: Sure. Um, so the basics are, is that in one of his first actions after being inaugurated and really on the heels of a massive Women's March, which not only happened in the US but really around the world, Trump put into place the global gag rule, which basically says to foreign organizations, if you want to receive even a dollar of US global health money, you have to give up your right to use other non US dollars to provide any abortion services but not only services, referrals, counseling, and also give up your right to advocate to your own government about abortion policies. So it's really, um, a heartbreaking policy and one that we know has caused a lot of harm in the past. Unfortunately, Trump made it even worse because it used to only apply to family planning and now is extended to all of global health including HIV and aids. So PEPFAR was the biggest, newest, um, the biggest newly infected program under this expanded version.

Jennie: So how has it affected PEPFAR?

Caitlin: Um, we've seen a lot of troubling signs and I think there, there are a lot of unanswered questions that we're staying vigilant about. Um, I think one of the first things that is clear is because so many partners never faced the global gag role before. There's mass confusion in the field. People don't understand what it is, they don't understand what they can do and not do. And I think that one of the risks in that is that there's a real chilling effect because when people are nervous and don't understand what's happening and are getting a lot of negative signals from the administration about a lot of issues in general, they tend to default to the lowest common denominator. And that means people are often holding back, holding back from providing services that are needing, holding back from engaging partnerships. So that confusion, that chilling effect is quite clear. I think we're also already starting to see impacts on HIV and I should say that the impacts on HIV aren't entirely new, even when it was only family planning. I think we know that many family planning providers served as an entry point, especially for women and children to enter the health system. And so they weren't only getting contraception there. They may have also been getting HIV counseling or testing or link to services. So even under the old versions of the gag, we already saw HIV impact. But I think with this expanded version, we're seeing it even more dramatically. And so many more countries are impacted. I think, you know, we're seeing examples, like there's an organization, the International Planned Parenthood Members Association in Mozambique, um, is losing about two thirds of their budget because of the expanded global gag rule. And again, this wasn't funding just to do family planning work, but they actually were working to support, um, about a half a million people, including many young people who they were providing with physical, psychological and social support for people especially who are living with HIV. So the impact is much broader. Um, the communities, the reaches getting devastated and there's not an easy substitute, I think for others to step in and do the work because so many of the organizations have built up special trust or are serving especially vulnerable populations, which other organizations don't have the expertise in.

Jennie: Yeah. And I think it also harkens back to what you said before, talked about before with the Obama administration focusing on integrating services. That even if the, um, global gag rule hadn't been expanded, more groups would have been impacted because you were talking, doing so much more integration of health services. Um, and so it makes it so much more complicated.

Caitlin: Yeah, absolutely. Um, with Planned Parenthood Global, which is our international arm, we actually had a partner in Kenya who, um, was partnering with PEPFAR around an orphans and vulnerable children program, but because they also valued their role as an abortion advocate, they're having to pull back from not the work. They're still committed to working with orphans and vulnerable children, but they can no longer partner with the US government to do it, which is a real loss. And I think, you know, it's not only a story of them losing the current grant that they have, but they will no longer compete with everyone else for future grants. And that's kind of an untold story because it means just we're having less competitive processes. The best people aren't necessarily coming forward to do the work, um, in the way that they could have.

Jennie: And new groups with established contacts don't just spring up. So, you know, if this grant goes to someone else, they may not have the connections in that community.

Caitlin: Yeah, absolutely. And we just can't afford to take the foot off the gas at all. You know, it's so urgent. Um, we've made a lot of progress, but it could easily slip backwards. So this policy I think, um, really puts us at risk of doing so.

Jennie: So how has the HIV/AIDs community responded to the global gag rule?

Caitlin: Yeah, that's a great question. And I think, um, advocacy has always been sort of part of the DNA of the AIDs community. And I think especially people living with HIV have always really been on the front lines of pushing on for advocacy, funding and policy. And so for many, the global gag rule is sort of already on their radar. But I do think this expanded version has opened up a whole new set of players who all of a sudden are seeing themselves in this fight. Whereas people used to think, oh, maybe like, oh, that's a repro fight. You know, I support it. Um, you know, I hope they're successful, but I don't see myself in that. Now I think people are standing together in a much more robust way, which is maybe one of the silver linings of all being under attack together. But for example, we worked on an open statement opposing the global gag rule, which has been endorsed by over 160 organizations and that includes more than a dozen national major HIV organizations. So I think they're really showing up vocally, vocally, visibly, and to state, say that the global gag role hurts the HIV response and is really bad public health policy. And it'll be interesting to see the global AIDs community come together in Amsterdam in July. Um, there's a major global AIDS conference that happens every two years and this will be the first convening, uh, since the gag rule has been put into place. And already, I think we're hearing a lot of chatter and momentum about seizing this as an opportunity both to do the technical assistance and capacity building to make sure people understand what the gag rule is and isn't, but also to really harness a collective strategy and to really send a loud and vocal message of as an HIV/AIDs community, we oppose the global gag rule. So I'm excited for that moment and the real loud global response though, hopefully it comes out of it.

Jennie: Oh, that's really great to hear. So what, we touched on this a little bit. What are some of your concerns going forward with PEPFAR?

Caitlin: Yeah. Um, some of the big concerns that are on my mind is we have seen an uptick, um, a resurgence, which I, uh, reflected on earlier of abstinence only despite the decades of evidence that it's not effective. And I think we've seen this domestically, and now it's sort of creeping into the PEPFAR program guidance that comes out annually, which again, really hurts young people and the future generations who are going to be left without the tools and information they need to keep themselves healthy and safe. So, um, that definitely keeps us up at night and has us really concerned. And I think we know that the Trump administration has put so many ideologues in place. Nothing is sacred to them. So PEPFAR is not sacred. They are going to push their agenda wherever they can push it. And unfortunately I think PEPFAR is one of the targets that they have in their sights. So that's definitely concerning. And then I think any backsliding on DREAMS because it has been so promising and so hard fought for by so many advocates. And I think the thing with DREAMS is it wasn't just that it was listening to the data, it was also listening to the young women and girls themselves who told us what they needed. And so we're finally delivering that, that I hope it doesn't, that doesn't get sacrificed for people with an extreme ideological agenda.

Jennie: Yeah. And I think it's also worth, you know, you talked about the return of abstinence only, it's also been rebranded. So you might be seeing things about it, but not realizing that that's what you're seeing. Um, the new thing is sexual risk avoidance. Um, and so that's the new name they've given the same old program.

Caitlin: Yeah, that's totally true. And then we have seen that creep into the global sphere as well. And I think people aren't always familiar that that's how it's being rebranded in the US so they, their antenna isn't up automatically, whereas abstinence only, they think, oh, that isn't a correct program. This, they're like, oh, what is that? So maybe it might slide in there.

Jennie: Yeah, like it sounds good right?

Caitlin: Yeah. So it's, it's very insidious and I think we're going to have to stay super vigilant to combat it.

Jennie: So I know one of the things that the global community has really been focused on, um, and the last several years is creating an AIDs free generation. Um, so what needs to be done to make sure we see this happen?

Caitlin: Yeah. And I, that was such a exciting and ambitious framing of the issue, so I do hope we're still thinking about like what is that longterm vision of what it's going to take. Um, I think for me, one of the key things is that, and this was a theme in the sustainable goals, is that we can't leave anyone behind. And that may sound obvious, but I think, you know, with a lot of efforts, we deal with the easiest people first. And so, you know, if we're truly going to achieve an AIDs free generation, we can't leave women and girls behind. We can't leave LGBT populations behind. We can't leave sex workers behind. We can't use people leave, people who use drugs behind. We have to think really holistically and there's no one size fits all solution for all those people. So we have to challenge ourselves for what they really need and really deliver it for them. And then I think to go back to the absence only theme, we have to stick with what we know works and we have to follow the science and the evidence and the data. It's a huge disservice for the people that we're trying to serve if we don't do that and we'll never achieve an AIDs free generation if we don't stick with that. And then I think, you know, there are sort of larger themes that we have to do. We have to center things on human rights. We've made a lot of progress, but there's still an incredible amount of work to do to combat stigma, discrimination and violence, which are sort of underlying factors that I think continue to perpetuate HIV and AIDs. And we'll never fully get over the epidemic if we don't tackle those kinds of things.

Jennie: So now that the listeners know all the great information around PEPFAR, what can they do to get involved?

Caitlin: Well, as an advocate, I love that question. And also as an advocate, I think it's always a good time to contact your member of Congress, but it's an especially good time right now because members of the House and Senate Appropriations Committee, right now, are drafting bills, which will decide funding levels for a range of programs, but PEPFAR included. And so I think especially on the global issues, it's important for them to hear from their constituents that you care not only about how the u s government funds programs in your own community, but that you care about how the US shows up in the world. So calling your member of Congress, sending an email, sending a tweet saying that you support global health funding, including for HIV, including for reproductive health is super important. And it's really timely right now because they keep track of those things. It does have an impact. And I think those of us who are up here in DC slogging it away in the hallways, can tell when people have been hearing from their constituents. So that would be number one. Um, I think you can also direct your member of Congress to support the Global HER Act, which you may have also talked about on previous podcasts, but that is the Global Health Empowerment and Rights Act and it's the bill that would permanently repeal the global gag rule. So it's important for people who care about HIV to also think about ending this policy once and for all um, so that we're never in this situation where we're concerned about, you know, decades of progress being undermined by a new insidious policy.

Jennie: The exciting thing about focusing on global issues versus domestic is not as many people call their congressmen about it. So I mean that's sad, but it also means your voice is that much louder when you call and support some of these international issues because they just aren't hearing from as many people.

Caitlin: Yeah, absolutely. I think that's true. Verses other issues, there's a really groundswell. It's notable even when five people call, so if you know everyone who's listening to this podcast called their members of Congress, it really could make a difference.

Jennie: Well, Caitlin, thank you so much for being here and doing this. I had a great time. We'll have to have you on again.

Caitlin: Thanks. Absolutely. I loved it.

Jennie: For more information, including show notes from this episode and previous episodes, please visit our website reprosfightback.com. You can also find us on Facebook and Twitter at rePROs Fight Back. If you'd like our show, please help others find it by sharing it with your friends and subscribing, rating and reviewing us on iTunes. Thanks for listening.

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