How a Pediatric AIDS Charity Promotes Awareness and Reduces Stigma (Podcast)

This week’s Business of Giving features Chip Lyons, president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation. Elizabeth Glaser, married to actor Paul Michael Glaser, star of the TV show Starsky & Hutch, changed the attitude and willingness of government to fund research into pediatric AIDS when she stood at the Democratic National Convention in 1992 to announce how she and her children had acquired HIV.

Today, HIV and AIDS are survivable if diagnosed and treated — the earlier, the better. And, although not a cure or vaccine, medicines can reduce the transmission rate from HIV-positive pregnant women to newborns from 40 percent to 2 percent.

“I’m of the firm belief that we don’t have a chance at the 2030 goal of globally ending HIV and AIDS across all age groups as a public health crisis unless and until we do so among children and adolescents,” Lyons says.

Listen to the podcast, which is hosted by Denver Frederick, or read the transcript below.

Denver: Political junkies in the audience can most likely name the most memorable speeches ever given at the national conventions of the political parties. From “The New Deal Speech” of FDR to the “Extremism in Defense of Liberty,” the one delivered by Barry Goldwater. But they would be remiss to overlook a speech given by Elizabeth Glaser at the 1992 Democratic National Convention, held here in New York City on July 14th, a speech that changed the way this nation thought about and approached the AIDS epidemic. Here to discuss that with us this evening, all the work in progress that has ensued since, and what still needs to be done is Chip Lyons, the president and CEO of the Elizabeth Glaser Pediatrics AIDS Foundation. Good evening, Chip, and welcome to The Business of Giving.

Chip: Thank you very much, Denver. It’s great to be here.

Denver: Pick up on that, Chip, and share with us the story of how the Elizabeth Glaser Pediatric Foundation, also known as EGPAF, came to be.

Chip: It came to be because of Elizabeth. In giving birth to her first child, her daughter Ariel, Elizabeth required a great deal of blood. She hemorrhaged and required blood that unknowingly contained the HIV virus. Ariel contracted the virus during the breastfeeding period. A couple of years later, they conceived and had a second child who contracted the virus in utero. Nobody knew anything about AIDS affecting families and children in that way.

When the children fell ill, everything was tested and examined, and they discovered the children and Elizabeth were HIV-positive. From that moment, she was seized of the idea of saving her children. From that point, 30 years later, the Elizabeth Glaser Pediatric AIDS Foundation is a leader in ending AIDS in children around the world.

Denver: How would you describe her impact?

Chip: It’s hard almost to characterize because it was so unexpected. At that time, HIV was thought of as coastal in preponderance and concentration and awfulness in New York City, in San Francisco, and others. Here is a family… in fact it was a celebrity family; Paul Michael Glaser, her husband, was star of Starsky & Hutch. It’s a time during the Reagan years as well where HIV just was… it created such fear and loathing everywhere. I think one of the largest mailings other than the Census in the United States was from the Surgeon General C. Everett Koop was explaining, “You don’t get it from toilet seats. You don’t get it from kissing and water fountains…” and so on.

Here is a celebrity couple, and HIV has assaulted them. She was composed, she was compelling in that speech you were referring to, and then she took the battle to the Hill, meeting with members of Congress and administration to discover there were no pediatric medicines. There was no research into pediatric HIV and AIDS. That also is what she was seized of, and she changed that. She changed the attitude and the willingness of the US researchers and others to attack pediatric AIDS.

Denver: A white, heterosexual woman who does not use drugs… it made it… It could get any of us.

Chip: And whose friends included the best known names in Hollywood, who were mortified. Their other friends also… It wasn’t just because of Elizabeth. The community was assaulted by HIV and AIDS. So, they helped generate resources, the early research grants. It was called the Pediatric AIDS Foundation initially until Elizabeth passed when it was named after her. That’s where the real impetus came. In fact, some of the leading researchers working today on pediatric AIDS were young medical school folks who received their first funding to look into pediatric AIDS. Now, they’re preeminent world thinkers about pediatric AIDS.

Denver: Talk a little bit specifically of how AIDS can be transmitted from mother to child, and what are the measures that can be taken to prevent that transmission?

Chip: The most important thing, of course, for a woman who knows or suspects she might be pregnant…. And this is globally, and certainly globally includes the United States, and it includes your listener area… is to know your HIV status. You can’t take the measures necessary if you don’t know your status. If someone is tested positive, the earlier that’s known, the better. Then because of the scientists, because of the research and the investments, there are medicines you can take where instead of 40% chance of an HIV-positive pregnant woman transferring the virus to her newborn, it drops to about 2% chance. It’s not a cure, and it’s not a vaccine. We’re talking about controlling and minimizing. We’re not yet at the stage where we can talk about eradication from a public health point of view. In taking those medicines diligently through and past the breastfeeding period, there is a negligible chance of passing the virus on to a newborn. The converse is also true. If you’re not on those medicines, and you don’t take them regularly, the risk you pose, or that the infant is exposed to, grows exponentially.

Denver: Let’s talk a little bit about the scale and breadth of this problem. Why don’t we start with where was it at its peak, that being pediatric AIDS, and what kind of progress has been made since then?

Chip: Some of the facts are sobering. It’s useful to be reminded of just… I meet people all the time who are tired of sharing about HIV, or on the other side, think it’s over and done with. We have all been fighting this for 30-plus years. I understand on a certain level the weariness of it. But let’s remember what’s happened. Over 70 million people from the outset have been infected by HIV; 35 million deaths from AIDS, AIDS being the endpoint of having the HIV, the virus. Currently, today, 37 million people are living with the virus. Maybe half know that they have that virus.

In 2017, nearly a million people died of AIDS. Fifteen years ago, there were as many as 1,500 or more children infected every single day with HIV. That number is down to 400. We have this two sides of the coin where the enormity of the challenge historically; the present set of circumstances are still there’s an enormous amount of work to do and yet, we do pause from time to time… and the progress that we’ve made is stunning.

The number of people tested, the number of people newly initiated on treatment and – oh, by the way, if an HIV-positive person is on treatment is taking their medicines, the chance of them transferring the virus to another person who is HIV negative through sexual relations, for example, drops to almost nothing. It’s almost like a vaccine, 97%, 98%. So treatment is a form of prevention. You want all those people living with the virus, or those people that don’t know if they have the virus or not, to be tested, to get on treatment, both for their own health, but also to protect their loved one, their partner, their spouse, whoever.

Denver: It’s good to take a moment and just think about those numbers a little bit because I think we’re in an era where everybody thinks government is incompetent, and there has been one critique after another on philanthropy— how it’s ineffective. And never to get complacent with all that needs to be done, but taking a moment and saying, “We really have accomplished a lot,” I think this is very important for us to take that moment, to reflect on that, and then get back to work.

Chip: I’m glad you point that out because the United States, both government and taxpayers that made this happen, followed an initiative launched by President Bush, announced in the State of the Union Address, to finally rise up against HIV and AIDS. It was a stunning announcement. It was a leap into the unknown because we did not have the research. We did not have the kinds of tools that we have today. It just was remarkable, and it was successful. It remains successful, and it transformed how HIV and AIDS played out around the world, not least in Africa and sub-Saharan Africa, but also in the United States.

Mother-to-child transmission of the virus today in the US is down – population, what are we? 350, 370 million people – fewer than 200 cases a year. In Africa, in terms of the work that we do as the Elizabeth Glaser Pediatric AIDS Foundation with a lot of support from the US government, we’ve reached over 30 million women with services to protect their health, but also to protect the health of their newborns.

That initiative continued under President Obama. We just continued to grow and improve our ability to find people, test them, initiate them on treatment. At the same time, more governments outside of the United States have invested in something called the Global Fund for AIDS, Tuberculosis, and Malaria. National governments in Africa and in other countries increased their own investments. After all, it is their epidemic. If you’re in Kenya, it is a Kenyan epidemic. In fact, there are micro epidemics within Kenya in the same way that we have different public health challenges, whether you’re in North Dakota or Miami or Tulsa or Minneapolis or the Bronx. You have different profiles, different dynamics of public health issues.

It’s the same in Kenya as well, different parts of the country. At the end of the day, they are Kenyans. It’s a Kenyan epidemic. Nobody wants to control the epidemic more than the government of Kenya and people of Kenya. Particularly, when you get into challenges in reaching other populations that can be difficult to reach, which we can talk some more about. So, there’s a leaning in from multiple directions that needs to continue, but it was historic, unprecedented leadership by the United States.

Let me just touch on a point because sometimes people feel or understand that the US spends an enormous amount of its budget every year on foreign assistance. In fact, for every dollar spent by the United States on all things, from highways to all things, foreign assistance is less than a penny of that. The HIV and AIDS response, through something called the President’s Emergency Program for AIDS Relief, PEPFAR, is just a part of that penny. The return on that investment, it’s substantial money. But as a percentage of what a taxpayer is seeing go to fight against HIV and AIDS, it’s miniscule.

Denver: Let’s talk a little bit about your approach, which is very thoughtful and very comprehensive, and it’s comprised of research, advocacy, and program. Let us start with research. What has been done, and what are the scientists working on right now?

Chip: A number of things are being done on the research front. There are never enough resources for research. There’s a real process of trying to identify the most important, the most impactful, and even the timeframe for when that research is going to produce actionable evidence and data. There’s two kinds… two bases… many kinds, in two buckets. The hard science research, which is trying to find a cure, trying to find a vaccine, that is not the research that we do as EGPAF, but the National Institutes of Health, CDC, philanthropy, Bill and Melinda Gates Foundation are investing, and scientists are working diligently. There are updates every 6 months and 12 months at major conferences and so on.

What my colleagues work on is more around operational research, which is how to do things better than before. It’s looking at the knowledge and attitudes and practices of communities– health-seeking behaviors, or lack of health-seeking behaviors. Who goes to the clinic? Who doesn’t go to the clinic? Why don’t they go to the clinic? Are the clinics set up the right way? Are the waiting lines inappropriate? You can get down into basics like: What are the hours the clinics are open?

Denver: If you design a program right, it can be profound.

Chip: Guess how you design it right. You talk to people. In that sense, it’s not rocket science. It’s human behavior. Listen to clients, whether you’re in business or whether you’re in health. Listen to people that you want to take a certain action, and if that’s a health-seeking action to be tested and so on, you have to do it in a particular environment that’s protective of confidentialities, protective of potential stigma, and so on. Your interest is getting people tested, their status is known, they’re initiated on treatment, and with the knowledge and confidence level such that they stay on treatment. That’s’ what you’re after, and research plays an enormously important role.

Denver: What would be your number one priority in the advocacy area? Which I know… you’ve been able to leverage your efforts significantly by placing a lot of energy towards advocacy.

Chip: We have. Because the Elizabeth Glaser Pediatric Foundation is… we’re working across 19 countries. We support over 5,000 sites, meaning hospitals, reference hospitals, clinics including tiny clinics. They are not our clinics… The public health clinics in those countries. We’re supporting a public health response. Because of our experience and our data every single day, we’re about 3,000 staff globally. Ninety-seven percent of those staff are out in the field across those countries. It informs our advocacy. That advocacy really occurs on three levels around similar topics. One, of course, is in Washington. We are duty bound to communicate back to members of Congress and the administration and the public: What are we accomplishing? Where are we hitting walls? Why aren’t we hitting targets that we thought might be achievable? How are we making adjustments, and so on? So that there’s a feedback loop there. That dialogue with the Hill is crucially important and hugely appreciated by Congress, as well as the administration.

Denver: You’ve probably gotten as much, if not more, bipartisan support for the work that you do as anyone else that I know.

Chip: If you ask me, name two members of Congress, there are 535 of them; name two members of Congress. They’ve only got five minutes to talk about HIV and AIDS and PEPFAR, which two? I would name a Republican, and I would name a Democrat. That’s not for the symbolism of it. That’s how committed and passionate and knowledgeable. They travel to the field. These aren’t junkets. Going to Angola and driving six hours to get to clinics is nobody’s idea of a junket, but it’s enormously important members of Congress take the responsibility and time to do that from time to time.

Regionally also, we work very closely with the African Union, with African First Ladies. There’s an organization of African First Ladies fighting HIV and AIDS where our advocacy objectives are to make sure the policies that they adopt, including the laws that pertain in their countries, are conducive to health-seeking behavior, as opposed to blocking health-seeking behavior. If you make homosexuality illegal, guess what happens. The very people you want to be supportive of and encouraging of to know their status, to take prevention measures and so on and so forth, they’re not going to show up with a sign that says, “Here I am. I need a consultation.” Make it easier, not more difficult for your own people who have health challenges.

At the third level is at the individual country level. There again, focusing on the right and most effective policy framework, but also issues like stigma. Working with faith-based leaders, for example, who take to the pulpits in various countries and reduce that stigma… These are our brothers and sisters in faith, in Christ, in other faiths as well. It’s their language and their messaging. But it’s got to be okay to love someone that has HIV and AIDS, and by love I mean: put your arms around them; at the clinics, provide the services that they need; be supportive of that person and those communities that are particularly afflicted. I think we hugely leverage the work we do on the ground through our advocacy work, and I’m proud of the fact that Elizabeth started out as a pre-eminent advocate in the United States, and we’ve taken that megaphone, if you will, and it is on the basis – sometimes we’re emotional. I’m an emotional person. I’ve embarrassed my staff a couple of times. But in addition to the emotion, those sites provide the data and evidence we need to get this right in the communities in which we’re working.

Denver: As far as your program is concerned in delivery of services, I think you’ve already alluded to that to a certain degree. It’s really local. It’s not the western guys coming in and parachuting with a solution. It is really working in partnership on the ground with the people in those countries and allowing them to have ownership over this.

Chip: I’ve had a 30-plus year career, and I’m as proud, or more proud, of the colleagues I work with now as at any other time, and I’ve been proud of every single job and organization I’ve worked with. We are 95% African organization; 95% of the new infections are concentrated in sub-Saharan Africa. When I mentioned we’re 3,000-plus staff, there are African nationals in Kenya, Zimbabwe, Mozambique. I can go on across the 19 countries; doctors, nurses, researchers, grant managers across the board as dedicated and competent and knowledgeable group of colleagues as anybody could find… so that local nuance, how people of different communities, different faiths think about different issues. Why do you go to a clinic? When do you go to a clinic? Do you need someone’s permission to go to a clinic? What has to happen at that clinic?

Men want to be seen by male nurses, not female nurses, if they’re going to be asked to lower their pants as a part of a routine checkup, including being tested for HIV and AIDS. If you’ve got an all-female clinic, you have lower turnout in terms of male clients. We’ve changed that. The results are dramatic. It’s back to the point we both were making earlier. Listen to the patient. They will tell you. Then when you get basic answers like, “Look, you asked me why I don’t come to the clinic. Clinic opens at 8, closes at 5. I go to work at 7, I get off at 6. I’m off the weekends; you’re closed on the weekends. What would you have me do?” Maybe we should change the hours. “The clinic’s way over there; can you not have a satellite clinic? I’d like to be able to talk about my issues and not just HIV. I want to talk about hypertension. I want to talk about I’m fearful of diabetes, and I want to talk to another man about those things, and I want to be examined in a certain way.” When we’ve made those adjustments, the results are dramatic.

Denver: You have plugged in to a lot of established lines of communication, and when you remove friction from these things, the results can just be staggering. Let me ask you about a cohort though that’s been a bit more challenging, and that’s going to be youth and adolescents. Although youth and adolescents are only 5% of the people who have HIV, 14% of the new infections are among youth and adolescents. How do we need to change that, change the messaging, change the approach?

Chip: Along the lines of what we just said, adolescents is a challenging cohort, whether you’re living in Brooklyn or… thankfully, I was blessed with good kids who occasionally listen… not that they’re adults. It’s a known challenge. Adolescents very often are quite self-confident. They’re going to live forever. They’re healthy often, or think they are healthy as horses all the time. But they also become sexually active, and often earlier. The march of responsibility and care doesn’t necessarily match some of their other behaviors. Almost every other cohort in terms of new infections of HIV and AIDS we’ve seen decline, sometimes precipitous climb. Sometimes they level off, and then we have to make adjustments so that the decline continues. Adolescents are showing flat and increasing. That’s terrible for those individuals. But it’s terrible what it potentially portends in terms of controlling the epidemic.

Remembering we are without a vaccine, and we are without a cure. Not only are there more new infections among adolescents, that cohort is growing at an unprecedented rate. So, the numbers are staggering of more kids growing into adolescents, adolescents into adulthood. Around the world but particularly in Asia and sub-Saharan Africa, it would be devastating to see increases in new infections. Among an adolescent cohort, it’s got the rest of their productive professional, familial, communal, and sexual lives ahead of them with higher rates of infection. To end HIV and AIDS as a public health crisis by 2030– which is a globally-set, globally-agreed goal, including by the United States, actually referenced recently in the State of the Union Address by President Trump–we are not going to achieve that if we have increases in new infections among adolescent cohorts.

There’s a variety of things that we are addressing. We put a real focus on adolescents, and the first thing is: Are we designing programs, or are they designing programs? Are we doing it together with them in the lead? I’ve been to a number of sites that are oriented towards adolescents. The peer counselors are young people, some of them are HIV-positive, and some of them are HIV-negative. Older folks like me need to leave the room at times. They have conversations. I could sit in the room, I’m not sure I would know what they were talking about. But that sort of peer-to-peer counseling, hours, convenience, discretion, peer support, going with friends, your guy friends together, there are different sorts of approaches like that.

At the end of the day, we’re still talking about the basic steps, which is you have to be seen by someone who can give you a test. Or, operational research is being done on self-testing. It’s one thing to do self-testing, but then there’s got to be a linkage to care. So, you get counseling, and you can be initiated on treatment. What’s going to work best with adolescents? Let’s not assume that all adolescents around the world are the same, because they’re not. They’re probably more similar than not, but there are important distinctions. Likewise, across sub-Saharan Africa, some things are going to work better here and there, but at the end of the day, we are not going to be able to turn this around unless they are engaged, they are leading, they are speaking, they are thinking, they are advising on how we’re going to provide these services, and they’re going to address the stigma that gets attached– the stigma between teens, but also between adults and teens at the same time.

Denver: Great points. They have to have ownership as you say. The idea of adolescents going to a clinic and standing in a line, no matter what part of the world you’re in, just doesn’t ring true the way it did perhaps for a generation or so ago.

Let me just ask you a little bit more about the UN Sustainable Goal of health and trying to end this crisis by 2030. You just said: we’re not on track, obviously because of the adolescents and youth. What has to happen to get us on track?

Chip: That’s a really good question. I wish I could say, there’s just this one thing. If we could just take care of this one thing, we’d be all set. I’m of the firm belief that we don’t have a chance at the 2030 goal of globally ending HIV and AIDS across all age groups as a public health crisis unless and until we do so among children and adolescents. What we need to do is to refocus on what the specific goals and trajectory and the data are telling us for 2019, 2020, and 2021. We don’t have a minute, a week, a month, and certainly not years to spare; “2030 is way down the pike. We’ll get there…” No. It’s what we do in 2019 and 2020 and 2021 that’s largely going to set the pace and the trajectory for 2030.

Then there’s very practical things. I yesterday co-chaired a webinar, fancy name for a conference call. We had 50 people on the line: Executives from pharmaceutical companies, executives from diagnostics, manufacturers – the machines that help you do a faster, better diagnosis, which we can talk more about – We had representatives of the faith community on the call. I co-chaired that discussion with the head of HIV for the World Health Organization; UNICEF was on the call, PEPFAR leadership, etc. We are all… I didn’t have to convince anyone. We’ve been working together for several years.

Our objective is we need better devices that are cheaper, easier to use, less energy dependent, don’t get mucked up if they get full of dust, and they return the diagnostic results in minutes, not weeks or months. We need medicines that you can give on a daily basis to a six-month-old that isn’t effectively a horse tablet. We need them in the proper doses for children that are under 50 pounds or under 25 pounds instead of: I’ve got this adult pill that looks like a third of a pill, so I’m going to try to break it. But that’s what people have had to do in the past.

We are collectively committed as a private sector, as faith, as government, as implementers like Elizabeth Glaser Pediatric AIDS Foundation; we are independent of each other to end AIDS in children, which every single one of those people in a meeting in Rome at the Vatican that we helped organize with the Vatican and the World Health Organization and others, stood up, figuratively speaking. They are committed to ending AIDS in children. They have a major contribution to make, whether they’re pharma or manufacturing or policy setting. We will be doing so again, including with the political leadership of a number of African and other countries. What has to happen is we all have to work in sync. We need to respond to the data. We need a set of policies that are conducive to achieving the goal. We need the political will, particularly in countries that are fighting their own epidemic, and we need the resources to continue all of these activities. And we need them now.

Denver: Let me close with this, Chip. You have seen the full spectrum of the human condition in this work. Stories of just unbearable pain and loss and suffering on one hand, but also those that inspire and elevate, where you’ve seen the human spirit at its very, very best. Share one of the latter of those stories with us.

Chip: I have many of those thankfully, both painful ones and the inspiring ones. Several come into my head immediately. But I’ll pick a clinic in rural Kenya where the dedication of these two young nurses; they were probably in their 20s, was just staggering and inspiring to me. Their enthusiasm, their smile, their energy. They were ready for any question I could possibly put to them. They’d written the numbers on the wall. They were just as competent and proud of their nursing capability as they could be. Part of that visit included a ceremony where HIV-positive moms with newborns– their newborns were 18 months old, and that’s the final test to ensure or to know whether their baby is HIV-positive or negative because there is a risk factor during the breastfeeding period– when the announcement is made to a mother that their 18-month-old has just had the blood test and is confirmatory HIV-negative. Try and imagine her joy.

Denver: Chip Lyons, the president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation, I want to thank you so much for being here this evening. For people who want to learn more about this work or perhaps financially support it, tell us about your website and what they’re going to find there.

Chip: We are at pedaids.org, Elizabeth Glaser Pediatric AIDS Foundation. You’re going to see maps where the work takes place. You have access to updates on our activities. There is an opportunity to donate. I certainly hope people will. Consider supporting our work financially.

I want to leave your listeners with a couple of points, super short. HIV and AIDS is not over. HIV and AIDS is entirely preventable. It’s entirely survivable. You can survive it wherever you’re living if you know your status and you get on treatment. Individual listeners saying I’m not at risk. Superb. But your friends, you have family members and others, and none of them may be at risk either. But people need to be encouraged to know what their status is, so that the other steps can be taken.

Denver: After all, Elizabeth Glaser wasn’t at risk either. Thanks very much, Chip. It was a pleasure to have you on the show.

Chip: Thank you very much, Denver. It’s great talking with you.

Denver: I’ll be back with more of The Business of Giving right after this.