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Brian Kruger- Producer  -This is Part 1 of a 2-Part Conversation.
Richard Helppie Â
Hello, welcome to The Common Bridge. I'm your host Rich Helppie. We've got a very important topic today. Remember the HIV crisis and the AIDS epidemic that was washing through the country and the world? A lot has been done about that and here today to talk about it is Dr. Deborah Birx. Dr. Birx, welcome to The Common Bridge.
Dr. Deborah Birx Â
Thank you, so glad to be with you.
Richard Helppie Â
Dr. Birx is both a physician and a diplomat. She served in the White House as the Coronavirus response coordinator under President Donald Trump. She specializes in HIV immunology, vaccine research and global health. She oversaw the implementation of a program we're going to talk about today called PEPFAR, which stands for the President's Emergency Plan for AIDS Relief. From 2014 to 2020 Dr. Birx was the United States Global AIDS Coordinator for President Barack Obama and Donald Trump and served as United States special representative for global health diplomacy between 2015 and 2021. Dr. Birx, you've obviously been busy during your career, what other parts of your biography would you like to share with the listeners, readers, and viewers of The Common Bridge?
Dr. Deborah Birx Â
Well, I was very fortunate to have a husband that took the - my first husband - took the army scholarship, and that made it so that I had to join the army to be with him. So I actually did my residency internship and then 29 years on active duty in the US Army in the medical corps during a time just post Vietnam War. It was a very difficult time; transition to voluntary service, elimination of the draft, got to see the military go through all of those changes. I have to really thank the military; they forced us on management, leadership, budget acquisition, training. At the time, as a physician, I was like, why do I need to know all of this stuff, but the leadership and management skills that the military spends real time on throughout your career, and frankly, you can't can't get promoted from major to lieutenant colonel or lieutenant colonel to colonel without doing advanced courses and command the general staff school. It was a real privilege to have that training because it's served me well once I got into the civil service, really, and supporting PEPFAR for 19 out of its last 20 years.
Richard Helppie Â
Training that you get in the United States Army is really unequaled anyplace in the world; great discipline, because there's very little room for error in the military. Dr. Birx, I understand that the President's Emergency Plan for AIDS Relief, PEPFAR, is coming up for a renewal or an anniversary, tell us a little bit about what exactly is PEPFAR. How does it work? What's been accomplished? What's this date - the 20 years or longer -Â what's this all about?
Dr. Deborah Birx Â
Richard, you are right. It's the 20 year anniversary of the start of the program. I think three things really set PEPFAR apart. I was in government for 40 years so I really know how to make government work. But PEPFAR took a different approach to foreign assistance and was the largest US investment in battling a pandemic; [it] took a comprehensive approach. What President Bush said was [that] we could do things differently in a new way that would have a greater impact. Now, you have to break a lot of eggs to do things differently within the Federal government. He really told the agencies to work together in a new way. Really, I would say at the beginning, forced USA AID, CDC, Peace Corps, Department of Treasury, Department of Commerce to all work together - and Department of Defense - in a new coordinated way, where we weren't duplicating each other, but we were building off of each other's strengths. That may sound like common sense, but in a highly structured and bureaucratic Federal government there are a lot of silos and a lot of "this belongs to me, you can't have it." George W. Bush was our first president with a business degree and it's fairly routine that in business, you focus all resources on the customer or the problem or the opportunity. Well, you know how matrix management became a big deal in 2000, well, this was the first matrix managed program. I think brilliantly, they decided that the Department of State, which wasn't directly implementing themselves, would be the group that would oversee the other agencies and determine the budget that goes to each agency. Which has allowed the State Department to really just follow the data, and use data in a transparent way to hold the program accountable, and frankly, to hold the agencies accountable, holding the partners accountable, holding the communities accountable, and critically holding the host governments accountable.
Richard Helppie Â
So what type of data was tracked and what actions were taken based on that data?
Dr. Deborah Birx Â
At the very beginning, at the start of PEPFAR in 2003, the UN AIDS data on the depth and breadth of the pandemic in each of the countries was utilized to determine the initial investment.
Richard Helppie Â
Was this all of the Sub-Saharan Africa at this time?
Dr. Deborah Birx Â
It included Haiti and the Caribbean and Ghana and South Guyana and South America and Vietnam was added as the 15th country. So Sub-Saharan Africa, the Caribbean, South America, and Asia; that was really important because you can only be successful if you understand the cultures and the partners and the local community on the ground. The program had to be tailored to each of the individual countries and that is the second big deal about PEPFAR. PEPFAR was never attempted to be run from the US. It was run internal to the countries where actually the US ambassador in that country was responsible both for execution of the program and oversight of the program and worked with the central group, ASGAC - where I was in charge for seven years - to really define funding and oversight. The data was originally based on disease burden, then it became very much focused on understanding precisely where the people were that we needed to reach; by age, by geography, by race, by ethnicity and by tribe, so that we could ensure and hold ourselves accountable to reach both the groups that were marginalized by the host government - the LGBT community or young women who were marginalized - we were able to use data to see precisely who we were missing.
Richard Helppie Â
The interesting thing about this is that, for my audience - I know there are many medical professionals there and public health people - but for your average person not involved in this, I understand what you're saying about the host governments and about our ambassadors being responsible, but a person suffering from an HIV infection, or perhaps at risk, how did they get located and then what services were they offered to remedy that and then what was the data checkpoint to see how effective it was?
Dr. Deborah Birx Â
A great series of questions. It was grounded in originally reaching everyone who needed our support, both with prevention services and treatment services. Obviously, at the very beginning of PEPFAR, it was very much focused on reaching those who were dying. It really put a lot of effort early on in the program in reaching those people who had symptoms and were sick from HIV/AIDS and ensuring that they were on life-long, effective treatment that allowed - Americans that have been on that type of treatment for almost a decade - allowed people around the world to thrive now; for moms and dads to be able to raise their family and for moms to be able to have children without HIV. So that was the original focus. As we became more capable in and working within countries to find out where everyone was, as you just described, we started doing outreach further and further into the more and more remote areas. Then we added, in 2014...because you're getting to a very important concept. When you're delivering services you can only see the people who come for services, whether it's services to prevent HIV or services to treat those who are impacted by and had acquired HIV; so you only see what you see. That's always a problem if you don't have another system, and what we put in was community level surveys, household surveys, door-to-door surveys, so that we could see both who we were reaching and who we weren't reaching, and then tailor the program to understand what we needed to do and what the barriers were from keeping those individuals from accessing services.
Richard Helppie Â
Imagine I'm in a remote village in Sub-Saharan Africa and I live there and a medical professional arrives at my home. What do they tell me? What do they ask me and what do they do for me?
Dr. Deborah Birx Â
So very important; that doesn't happen without all the pre-work. To go into a local village we would meet with the village chief and the village elders - elders and the leaders - and talk about what we wanted to do and listen to what they wanted us to do and really come to a consensus of what we needed to do; whether it was service delivery or whether it was this survey. Then we would come in with education at the community level; that could be at churches, that could be at get-togethers where we serve food, where you would really have the community engage and do an overall education. Then we would go door-to-door or then we would open the clinic in that community so that trust had been established, relationships had been established and we were able to really educate and inform and get feedback and listen. I think the biggest thing that we did is we listened to communities about what their needs were, met communities where their needs were, and then layered on the HIV prevention and treatment services.
Richard Helppie Â
So I understand this is a socialization, not coming in cold, coming through the government structures and tribal structures, tribal governance structures, if you will, depending on what was there. Now, what are the services? Are they testing, treatment? What did you find and what did you do?
Dr. Deborah Birx Â
At the beginning of PEPFAR, on all of Sub-Saharan Africa with millions of people who were infected, there were only 50,000 people on treatment. Those who were on treatment were having to pay for treatments, so they would go on and off treatment. I worked in Africa before PEPFAR and before the Global Fund and I'm one of the few who was there before and understands the level of devastation. In some countries 40 to 50% of every adult was already HIV positive.
Richard Helppie Â
How many?
Dr. Deborah Birx Â
40 to 50% of every adult.
Richard Helppie Â
Every adult was already HIV positive.
Dr. Deborah Birx Â
In much of East Africa, where I had most of my experience in the late 90s, it was about 10 to 15% of every adult was HIV positive. Every weekend was filled with funerals, whole villages were losing their teachers, their police, their politicians, their moms, their dads, their grandparents; it was ripping apart the social fabric of Sub-Saharan Africa. I think what President Bush said is we're going to respond to that in a comprehensive way. So you are right; just like there were all agencies involved, there was a whole suite of critical services. And what did that look like? There was an orphans and vulnerable children's program to really provide support; whether it was food and nutrition, whether it was HIV testing, whether it was HIV prevention for young children who had lost either both parents or a parent. There was comprehensive programming for those who were dying and comprehensive palliative care so they could die with dignity if we couldn't turn their cases around, which in most cases we could, but we had to attend to the people who were suffering. So there was that whole palliative care piece. And then of course, there was testing so that people would know if they were HIV infected and then there was the medication that prevents the progression of the disease. What we've learned is it not only prevents the progression of the disease, but it prevents transmission to others. So now you could start to see, not only are we saving people's lives, but we have the potential to change the very course of the pandemic.
Richard Helppie Â
I think in colloquial terms, those are known as a medication cocktail or a pharmaceutical cocktail but there's a more technical term for that.
Dr. Deborah Birx Â
Well, they were called anti-viral drugs. As you described, it was a combination drug or an ARV cocktail of drugs - three drugs at that time - that in the US cost about $25,000. But because of, again, the whole of government approach, the FDA worked with branded companies to transfer their technology, and we were able to use generic drugs, at that time cost about $1,200 a year by the time I left the program, and in 2021, it was down to about $75 a year. So you can imagine...cost then, of the drugs, then becomes a relatively easy piece of the cost structure, reaching people - as you described - becomes the critical element because you have to reach people who don't normally interact with the healthcare delivery system. We have that in the US too, both young men and young women don't normally interact with the healthcare delivery system. Young women don't unless they happen to be pregnant. Young men and actually, frankly, middle aged men and older men don't want to interact with the healthcare delivery system. So we had to really work with the private sector and that was the third point of PEPFAR. Yes, we used data, we saw our gaps but we also realized that sometimes we needed the private sector to come in and help us address those gaps. They were critical in testing but also reaching young women through what we call our DREAMS Program that was focused on young women, and MenStar which was focused on men to really get men into treatment.
Richard Helppie Â
I know one of the terms in that you published is something called "key populations" as being most prevalent for HIV. What is a key population and how much of the disease is concentrated there?
Dr. Deborah Birx Â
So the key population component evolves. Early on, when I was describing how communities were infected, when you treat the people - and in global health we often call it the "low hanging fruit" - once you get to the people who are available and motivated and already sick and seeking treatment, that's very different than reaching the well and reaching the well with prevention. The people at risk for HIV infection continued to evolve over the course of the program. Because as we began treating people that were symptomatic, we could get to the next group and the next group to the point where we were with two, what we call, "key populations." Those were really very evident populations throughout the pandemic, but became the group that was the largest gap. Who were those individuals? Particularly young women between the ages of 15 and 25, where the incidence, the rate, of new infection was very high. Men who have sex with men, people who inject drugs, people who are imprisoned, sex workers, those became populations that we had to focus on. We had to work with governments to create an environment where individuals that were stigmatized and marginalized within communities - and believe it or not, young women are stigmatized and marginalized within communities often - as well as the key populations of our LGBT community, men who have sex with men, people who inject drugs, prisoners and sex workers were often on the margins of communities. We had to develop programs that ensure those individuals could have access to programs that were non-stigmatizing and non-demeaning, and listen to their needs and ensure that we were addressing their unique set of needs.
Richard Helppie Â
I want to understand how the young women fit into this, in that NBC News did a study - and I think it was used in the President's State of the Union address just this past February, February 7 of 2023 - that says half of the new cases - now again, not going back all the way to the beginning of this - but half of the new cases in the region are coming from key populations and their sex partners. They said this is only 5% of the population but responsible for over half of the infection. It includes men who have sex with men, transgender people, sex workers, and people who inject drugs. That seems like a great target of opportunity with a small population to take out, perhaps, more than half the cases. How does PEPFAR deal with that?
Dr. Deborah Birx Â
I'm going to rewind us for just a second because we've decreased the rate of new infections by more than 50% and in some countries, by more than 75%.
Richard Helppie Â
How is that decrease measured? And I ask, because I've got a background in health data and I understand as you're going in and doing these first surveys, there's no baseline. You perhaps didn't know exactly what you were going to find; it would have been impossible to know. How did you go about measuring that rate of decline?
Dr. Deborah Birx Â
So really, critically important, from the very beginning the advantage that we had in the HIV world is there was a program called UN AIDS, who was very data driven also. They had begun collecting data since the 1990s and had developed what we call the Spectrum Model, but had never been validated, which is a great point that you are making. And so those early surveys at the community level that we did in 2014, and that some governments did before that - that includes Swaziland, we funded one earlier than that, Kenya, and Botswana, and South Africa who were regularly doing surveys - these surveys were being done on a regular basis. You're absolutely right, we use those community level surveys to both validate the UN AIDS Spectrum Model, as well as create that baseline. And now in most countries, they've not only had one survey, they've now had two surveys. So we can see precisely the improvement in the program, we can see precisely the gaps that persist and we can ensure that our programs are aligned to reach the individuals who are missing. Because it's easy to keep reaching the ones that you've already reached, it's very difficult to reach a population that, 20 years in, you're still missing.
Richard Helppie Â
How is it that they're still outside the survey boundaries?
Dr. Deborah Birx Â
They're in the survey; we picked them up in the household surveys. They came in as HIV positive, what we call not virally suppressed, not on treatment. So they hadn't been diagnosed, they weren't on treatment, and they weren't virally suppressed. But again, reminding you that we have already reached, as you described, the majority of the population and dramatically decreased the rates of new infections.
Richard Helppie Â
That was the original question; was the test mandatory by the local governance, saying look, we're going to do this survey and everybody in the household is going to give a blood sample?
Dr. Deborah Birx Â
You made a really critical point; all of the participation in the surveys are voluntary and that's why the education is so important, as well as knowing who's refusing. We have very few refusing and all these surveys - the majority of them - are on the website of ICAP, which was a critical partner. So if you go to AIDS Indicators Surveys - they're called FIAs - you'll find all of them online and the Repeat Survey is online. So we have very good participation rates across age groups. That allowed us to look at, over time, what you're getting at is what is the actual incidence of new disease versus what is the incidence of people who are already infected and on treatment.
Richard Helppie Â
You did mention a key population - young women - yet as recently as February that young women aren't even in the key populations. So I'm just wondering if there's data that says, okay, it's been eradicated and, I guess, as a technical point - I'm not a scientist - but why is it that the key populations, at risk populations:Â men that have sex with other men, transgender sex workers, people that inject drugs - why is it that they continue to be such a source of that and what can be done about it?
Dr. Deborah Birx Â
A series of questions there. There was a program that we developed called DREAMS: Determined, Resilient, Empowered, AIDS-Free, Mentored and Safe, [for] young women [it] started in 2014. Across the board, we've seen a 50% decline in the rate of new infections in young women, but it's still a persistent group. So you have to constantly ask yourself, what do I need to do more of, what do I need to change, in order to reach that young women's group that has not been reached in the last nine years. The same way with key populations, although in some countries - key populations have been reached in many countries - because of criminalization of LGBT behavior it becomes very difficult. That's why the three core ways to battle a pandemic are you have to have political will, because the political will allows presidents of countries and their ministers of health to see the pandemic that they have based on the data, not the pandemic they want to have. That is a very important distinction, because you have to use data constantly to tell them this is the pandemic they have today and this is how we have to change policies to make an environment where people who are being criminalized can access services. I think that is the gap that still exists in many of the key population programs. On the converse of that was a highly successful key population program out of the Ukraine that we had been funding for several decades, where the local governments realized that the federal and the national government could not do everything, that key populations in general were not going to always come to public sector clinics. So they funded, and we funded in PEPFAR, peer outreach and peer-led clinics or services where people who were injecting drugs could go to a clinic where there were peers there that were no longer injectors that really worked with them through all of the the behavioral issues as well as diagnosis for their HIV and treatment. That kind of model of community-led peer outreach has been highly successful with key populations; we have a lot of countries where it's been successful. But in Sub-Saharan Africa, in many of the countries where MSM behavior is criminalized, it becomes very difficult to reach those populations. We were able to reach them because we were able to work with governments to allow us to have outreach workers. Now with the new legislation that's coming out of Uganda it's very concerning, because if Uganda passes that legislature, it's very common that Kenya and Tanzania and Malawi will follow suit.
Richard Helppie Â
What is Uganda considering?
Dr. Deborah Birx Â
Uganda just passed a bill through their legislation that increased the criminalization of MSM behavior, and further, increase the penalties around any behaviors known to be that and encourage people to turn others in. So now you're starting to pit communities against each other and if you want a pandemic to expand, that's the way you do it, where you create a environment of discrimination, increased vulnerability, and lack of fracturing trust all along the cascade.
Richard Helppie Â
Sure. I mean, nobody's going to be candid if the result of the test might mean they're going to be incarcerated in a horrible place for the next 20 years versus get treatment. I can see that would just exacerbate the problem inside those key populations. So the program is coming up for a review or a renewal. What's that about?
Dr. Deborah Birx Â
Remember that President Bush worked with Congress. There's another key point about PEPFAR. It's bipartisan;Â it was bipartisan in 2003.
Richard Helppie Â
Bipartisan? What's that? [Laughter] I think Lake Superior State University said that was one of the words that they're taking out of the dictionary now...I'm just kidding.
Dr. Deborah Birx Â
So every five years it has to be what we call re-authorized because it is a different structure. It doesn't belong to one agency, we often will fund through a specific agency. This belongs to the entire Federal government; funding executed through State Department. That structure is different than a lot of the other foreign assistance and so every five years it has to be re-authorized. It was re-authorized in 2008, 2013, 2018. I got to oversee the end of the 2013 and the 2018 re-authorization and now we're into the 2023 re-authorization. It is a very important time because I found, when I was in the program, that congressional members and their staff were really helpful and constantly looking at the program and making suggestions. Within this re-authorization, they can change what we call reporting language on what data is collected and what reports they want to see, on what the program is going to address. It'd be very common for them to ask like, your questions:Â how are you doing with new incidence of disease, what are you doing to combat the group even though you've decreased it by 60%? What are you doing for the last 40%? What are you doing to reach the five to ten percent of those who haven't been reached that are already HIV positive? Those are the kinds of reports that Congress can ask for. They can ask for a report on how PEPFAR created the platform that actually made it impossible for Sub-Saharan Africa to respond to the COVID pandemic. So those are the kinds of reports that can be asked for within this re-authorizing language. This re-authorization is important, it's probably one of the last ones that PEPFAR needs to do, because the whole purpose of PEPFAR was be successful, stop the program. The fact that we are this close to being successful...PEPFAR went from 50,000 on treatment to to 20 million on treatment. So we know how to battle pandemics in a cost effective way - and that was with a flat budget. I'm going to remind the American people, all of this program improvement was driven by data in a flat budget, that's why the data also is critically important. Because if you have flat budget and you have to expand something, you have to contract something else. You can't make excuses, because people's lives are on the line. You can't be coming back to whether it's President Bush or President Obama or President Trump or now President Biden and say, I can't do this because I don't have the money. No, you come and say, I can do this, this is what we're going to do. This is what the needs are now, we're going to stop these parts of the program, we're going to expand these parts of the program. When was the last time you heard that in the United States - that we are looking at the data, we're going to expand this part of the program, and we're going to contract this part of the program.
Richard Helppie Â
I know your question was a bit rhetorical but I think this was one of the issues that we have. You mentioned the Coronavirus and the pandemic, look, there's no mincing words here that the scientific community took a hit, the CDC took a hit, in things that are coming to the fore now; that the six foot rule was, frankly, just made up, that the lock-down policies were really ill-advised, the closing of schools was ill-advised, we couldn't be candid about the effectiveness of the vaccine and things like natural immunity, and other treatments being swept under the rug. And then more so when people see that the people imposing the policies - Governors Whitmer and Gavin Newsom from California, and the mayor of Denver, among others - people are going to look at this with a jaundiced eye. I just have to think that some of your pursuit of getting this renewal is going to run into a heavy wave of skepticism because of COVID. Speculation on my part, but I tried to put myself in a position of a representative, I'm going to be asking a lot of data questions and I'm going to be saying, show me your work given what we've seen happen over the last several years.
(This is the end of Part 1 of a 2-Part conversation. Join us next week, Episode 210, for the conclusion)
(Watch, Listen or Read) PEPFAR, Pandemics and Scientific Credibility