The development of COVID-19 vaccines has allowed some people to return to “normal life”. But even now, not everyone can access these vaccines, particularly people living in low-income countries.
Unequal access to healthcare is a sadly familiar story for people living with HIV. From 1997 to 2006, an estimated 12 million people on the continent of Africa died because HIV treatment was too expensive.
In this episode of HIV unmuted, the award-winning IAS podcast, we will discuss why these parallels in unfair healthcare access are showing up time and time again, look ahead to the recent monkeypox outbreak, and assess whether we have learnt the critical lessons from COVID-19 and HIV.
Meet our guests:
Patricia Asero Ochieng is the chairperson of the International Community of Women Living with HIV in Kenya. She was diagnosed with HIV in the 1990s when her daughter was born. In Kenya at the time, access to HIV treatment was scarce and stigma was rampant. Patricia knew the answer lay in access and began advocating for treatment.
Eric Goemaere is an infectious disease specialist with a career spanning 40 years with Médecins Sans Frontières. When Eric arrived in South Africa in the mid-1990s, he was ready for a challenge, working on the biggest HIV epidemic in the world. Little did he expect the greater challenges of access to HIV treatment he was about to face.
Meg Doherty is the Director of the Department of Global HIV, Hepatitis and Sexually Transmitted Infections Programmes at the World Health Organization (WHO). Meg helps us to understand why – even when we have the science and means to deal with outbreaks – we continue to have unequal outcomes in global health.
Mike Ryan is the Executive Director for the WHO Health Emergencies Programme. Being at the forefront of managing acute risks to global health for nearly 25 years, Mike discusses pandemic preparedness and access issues in global health and applies this to the current monkeypox outbreak.
Rena Janamnuaysook is a Program Manager for Transgender Health at the Institute of HIV Research in Bangkok, Thailand, where she established the Tangerine Community Health Clinic, the first trans-led health clinic in Southeast Asia. When COVID-19 hit, she had to pivot at the local level to address the issues that globally continue to hamper our pandemic responses.
Patricia Asero Ochieng
Patricia Asero Ochieng is Executive Director of Ringa Women Fighting AIDS group and Team Leader at Dandora Community Aids Support Association (DACASA) Kenya. She is a staunch advocate for access to HIV medicine and serves as Chair of the International Community of Women Living with HIV, Kenya Chapter. Patricia is also a treatment educator, motivational speaker, community mobilizer and member of the Technical Working Group on Community Systems Strengthening in Kenya. She has extensive experience and deep knowledge of HIV issues surrounding treatment, access to care and intellectual property. She holds a diploma in medical counselling and psychology and is a FIERCE award winner in 2022.
Eric Goemaere is an honorary senior lecturer at the School of Public Health and Family Medicine at the University of Cape Town, South Africa. A medical doctor and economist by training, he began his career with Médecins Sans Frontières (MSF) in Chad in 1982. He was Medical Director at MSF’s headquarters in Brussels from 1988 to 1991 and General Director from 1994 to 1999. In 1999, Eric migrated to South Africa to pioneer MSF’s first public health ARV programme in Khayelitsha. He has occupied numerous positions in running MSF’s projects in South Africa and set up its regional support unit, the Southern Africa Medical Unit. Eric is a member of the South African HIV Clinicians Society, a founding member of the Joint Civil Society Monitoring Forum, a member of the South African National Aids Council Treatment Care and Support technical task team and a member of the WHO HIV guidelines core advisory group.
Meg Doherty is Director of the Department of Global HIV, Hepatitis and Sexually Transmitted Infections Programmes (HHS) at the World Health Organization (WHO). She took up this position in February 2020 after serving as Coordinator of Treatment and Care in the Department of HIV at WHO since 2012. She has worked in HIV and infectious diseases for more than 25 years, including leading WHO’s normative and programmatic work focusing on expanding HIV treatment to all and reducing inequalities in access to the most effective antiretrovirals. She spent 10 years living and working in low- and middle-income countries, advising ministries of health and partners on implementing comprehensive HIV and infectious disease programmes, including five years in Ethiopia as Director of Clinical and Training services for JHUTSEHAI, a PEPFAR implementing partner.
Meg was a faculty member of the Department of Medicine, Division of Infectious Diseases and School of Public Health at Johns Hopkins University School of Medicine. She received her MD from Harvard Medical School and her MPH and PhD in infectious disease epidemiology from JHU Bloomberg School of Public Health. Meg has published over 110 peer-reviewed articles and book chapters.
Mike Ryan, Executive Director of the WHO Health Emergencies Programme, has been at the forefront of managing acute risks to global health for nearly 25 years. He served as Assistant Director-General for Emergency Preparedness and Response in WHO's Health Emergencies Programme from 2017 to 2019. Mike joined WHO in 1996 in a newly established unit to respond to emerging and epidemic disease threats. He has worked in conflict-affected countries and led responses to high-impact epidemics. He is a founding member of the Global Outbreak Alert and Response Network, which has aided the response to hundreds of disease outbreaks. He served as Coordinator of Epidemic Response (2000-2003), Operational Coordinator of WHO’s response to the SARS outbreak (2003), and WHO’s Director of Global Alert and Response (2005-2011). He was a Senior Advisor on Polio Eradication for the Global Polio Eradication Initiative from 2013 to 2017, deploying to countries in the Middle East.
Mike did his medical training at the National University of Ireland, Galway, a Master’s in Public Health at University College Dublin, and specialist training in communicable disease control at the Health Protection Agency in London and the European Programme for Intervention Epidemiology Training.
Rena Janamnuaysook is a Program Manager for Transgender Health at the Institute of HIV Research and Innovation in Bangkok, Thailand, where she established the Tangerine Community Health Clinic, the first trans-led health clinic in the Southeast Asia region. She manages and provides technical guidance for the development and implementation of HIV research and programmes for trans populations. Rena is a fellow of the NIH CHIMERA D43 programme, part of the IeDEA network, learning to conduct HIV and mental health implementation research. She also worked as Project Management Specialist in HIV Key Populations for the US Agency for International Development and was co-founder of the Thai Transgender Alliance, the first trans-owned human rights organization in Thailand. Rena has a Master’s in international development from the University of Birmingham, United Kingdom, and is doing her PhD at the Amsterdam Institute for Global Health and Development, University of Amsterdam, the Netherlands.
Read the transcript
HIV unmuted: Episode 7 transcript
Femi Oke: Welcome to HIV unmuted, the IAS – International AIDS Society – podcast. I'm your host, Femi Oke. In late 2019, a new pandemic, COVID-19, emerged and changed the world as we knew it. Countries went into lockdown; health services were disrupted; economies struggled. And what about the other pandemic, HIV? Access to HIV prevention and treatment decreased as a result of COVID-19. Yet at the same time, communities and healthcare providers adapted. The development of a COVID-19 vaccine has allowed a return to almost normal life for some, but even now, not everyone has access to a COVID-19 vaccine. By June 2022, only 17% of people in low-income countries have received at least one dose. This is a sadly familiar story for people living with HIV. Between 1997 and 2006, an estimated 12 million people from the continent of Africa died because HIV treatment was too expensive.
Unknown: HIV patients are still dying to a big extent like before the introduction of ARVs. ARV drugs are available. Diagnostics are available. So the question is, why are HIV patients still dying?
Femi Oke: And what about outbreaks like monkeypox? Will we continue to have the same issues of unequal access to vaccines and treatment? Later in the episode, the World Health Organization’s Dr Mike Ryan and Dr Meg Doherty discuss why these parallels are showing up again and again, and whether we have learned the critical lessons from COVID-19 and HIV. But first, Patricia Asero takes us back to the 1990s in Kenya when she just found out she was living with HIV and had no access to treatment.
Patricia Asero Ochieng: I only knew that HIV was killing people and people were becoming very thin.
Femi Oke: Patricia found out she was living with HIV at the birth of her daughter.
Patricia Asero Ochieng: Then he said, Patricia, I'm sorry. The blood we took … you have it. So it was quite a shock. It was quite a shock for me to get to for it to sink. And when I got home, I just threw the chart to my mom and said I was going to die. So that is all I knew: that if you have it, then you are dead. So I stopped eating. I would cry for days and I would try to see what of my sins would have contributed to this. If you go to church, they would tell us that it is those who have sinned and fallen short of the blood of God who could get such a kind of disease. And it was [sins of] people like sex workers and gay men.
Femi Oke: At this time, HIV treatment was prohibitively expensive. Doctors like Eric Goemaere, an infectious disease specialists with Médecins Sans Frontières who arrived in South Africa in the mid-1990s, knew just how expensive it was.
Eric Goemaere: One treatment for one person for one year was between 10 and 12,000 US dollars. In ’98, there were 5.6 million estimated people living with HIV. This was more than a national budget for South Africa, so it was impossible to do it. And it explains probably the denialism.
Femi Oke: Due to the limited treatment available, Eric was forced to make impossible decisions about who lived and who died.
Eric Goemaere: So, there was no way we could afford this treatment. So we had a selection committee. The [people] we didn't take with this so-called selection committee would inevitably die. We tried to make it pen and democratic – so involving people from the community, people living with HIV, nurses from the different clinics. And basically, we would take one out of three or four candidates for treatment. We were basically a debt tribunal, but we had no other option. MSF could not afford more than what they did.
Femi Oke: This took an emotional tone on Eric and his colleagues.
Eric Goemaere: It was very difficult because I personally knew several of them. You are faced with the decision … sorry, it’s not going to be for you. Bye, bye, we cannot do anything for you. It was emotionally extremely difficult, mostly for the nurses in the clinics. You can imagine patients begging them … please, please save me.
Femi Oke: Lack of access to treatment wasn't the only problem. Rampant stigma left Eric begging nurses for rooms in the hospital to treat people living with HIV.
Eric Goemaere: The nurses were reluctant because they were scared, to be honest. They were really scared that they were all going to get infected. I remember they told me that HIV meant death inevitably. And actually, I begged them, can you give me please at least two rooms? And I remember the response was, if you want, you can have two rooms, but you will never have anybody queuing in front of those rooms because stigma is too high here. And people … you don't know the mentality. So finally we started after a couple of weeks. It was packed with people, including those coming from other townships, who had heard that suddenly there was an option, some light at the end of the tunnel. And I can tell you, the people were coming in a very advanced stage … brought in a wheelchair, wheelbarrow, carried on the backs of their relatives.
Femi Oke: Despite the stigma, Eric wasn't the only one advocating for treatment.
Patricia Asero Ochieng: We started doing a lot of advocacy in 2000. So medication had started trickling in. By 2003, at least a few hundred people were on treatment with generics.
Femi Oke: Like Patricia, Eric knew the answer lay in access. He learned a hard lesson with his first attempt to bring treatment into South Africa. The drugs were seized. After that, Eric used covert means to bring HIV medication into the country, and the results were staggering.
Eric Goemaere: As far as I remember, 150 patients in very advanced stage, and the survival rate was amazing – something like close to 90%. That's exactly what we wanted to demonstrate: it's feasible in an environment like this; it’s feasible.
Femi Oke: Access to HIV treatment changed lives for so many people living with HIV.
Patricia Asero Ochieng: When people start getting medicine, then their immunity starts becoming stable and they're not getting opportunistic infections. So that means that they're able to take care of themselves. They're able to take care of their extended families.
Femi Oke: Both Kenya and South Africa went on to scale up their HIV treatment programmes. Yet today, we see the same issues coming up again. This time, it's the lack of access to COVID-19 vaccines for many low- and middle-income countries.
Patricia Asero Ochieng: So the issue of costs came back again in great comparison with what we were seeing when we could not have access to HIV drugs. We have not learned any lessons at all because, in my honest opinion, the West behaved like Africa did not matter at all and we were not part of the global community. Again, we are back there, we have the problem, but because we live in Africa, we cannot have access. Our countries are not able to produce these drugs. So we cannot have access to them. We were at the mercy again of the West.
Femi Oke: Patricia and Eric described how harsh it was to have no access to HIV medication in the ’90s and 2000s. Why haven't we learned the critical lessons that the work of Patricia and Eric and so many others have taught us? And why in 2022, are we continuing to leave some people behind with COVID-19 vaccines? Now we speak to our next guest from WHO, the World Health Organization, to try to understand why even when we have the science and means to deal with outbreaks, we continue to have unequal outcomes. And what of new outbreaks like monkeypox? Will that response be unequal too? We are here with Mike Ryan and Meg Doherty from WHO.
Hello, Mike. Hello, Meg. Can you tell us what you do please?
Meg Doherty: I am the Director of Global HIV, Hepatitis and STI Programmes.
Mike Ryan: I am the Executive Director for the WHO Emergencies Programme.
Femi Oke: Meg, what parallels do you see between the inequitable HIV treatment access in the 2000s and COVID-19 vaccine inequity today?
Meg Doherty: Mike and I both lived through a period of time where it took 10 years to get HIV treatment. When we first learned about triple therapy – it was in 1996 – and I remember being at that meeting, and I'm like, this is amazing. We're going to be able to treat HIV. It's not a death sentence. But how many years did it take us to get antiretrovirals to all the people in Africa who needed it? We now have over 26 million people on treatment, but it took too long. And there was that need to call out the inequities.
From my experiences in Ethiopia, we felt like we were doing a huge amount of work to scale up. But then just look at what's happened in COVID in the last 18 months. We have how many new self-tests or tests … how many new diagnostics and treatments. And that sort of speed in innovation and science – and the ability to move those items around the world – needs to be captured for HIV. It needs to be captured for TB; it needs to be captured for hepatitis. So in many ways, when the world wants to make an effort and really change the trajectory of an infection, the scientists, the experts know how to do it, but that sort of moral imperative just doesn't come around all the time.
So for me, it's really important to figure out how we keep that moral imperative for all the other infections out there along with the pandemics that we're seeing.
Femi Oke: Speaking of new outbreaks, Meg, can you tell us more about monkeypox?
Meg Doherty: Monkeypox is a virus that’s been around for years, for decades. The transmission is through face-to-face, mouth-to-mouth, skin-to-skin, mouth-to-skin contact. So it's really about contact between lesions from one person to another person. And what we know in over 58 countries now reporting cases – plus, even in the countries in Africa – is that this may be in social networks, particularly in sexual networks, particularly among gay, bisexual and men who have sex with men. And we have a debt of thanks to give to the community of men who have sex with men, because they often are very connected with their healthcare providers. And when they identified something that was not usual, they went and sought healthcare and provided photos, have worked in the community, have provided their stories for learning and research. So in many ways, I think we're learning about this as the outbreak goes on.
Femi Oke: Is monkeypox a sexually transmitted infection?
Meg Doherty: I think it's hard. This is transmitting through sexual networks and through close contact with sexual activity. Is it a classical, sexually transmitted infection, meaning, are particles of the virus or active virus being transmitted through sexual fluids? We don't have that evidence yet.
Femi Oke: Can you tell us what WHO has been doing to proactively address stigma around monkeypox? And how do we make sure monkeypox isn't stigmatized?
Meg Doherty: The big issue we wanted to address right from the beginning is that we certainly didn't want to make mistakes like we did in the 1990s of further stigmatizing by saying, this is only in men who have sex with men. It is not a gay disease. And we were quite sure this was the tip of the iceberg, that we would see this in other communities and that we needed to be sure that we were giving enough information so that people would have awareness of what the risks are, what the lesions might look like, and also to protect themselves and protect others. So WHO has been working with InterPride and Pride on risk communications and community engagement, making sure these messages are going out through social media networks and really taking a personal responsibility, but also a community responsibility, approach.
Femi Oke: Mike, do you see any of the access issues we spoke about earlier also applying to monkeypox?
Mike Ryan: There there's a huge potential for this to happen, and really in many ways depends what trajectory this outbreak takes. Unlike in COVID – I think an important point – the countries that currently hold, for example, vaccines have actually released back many of their contracts to the manufacturer who can then distribute it to other countries who need it. I actually think we're in a better place than we were, and I have to say this, and I would like to put this on the record because it's something I've never had a chance to say to the HIV/AIDS community: we are building on the shoulders of giants. The equity that we manage to achieve in COVID has been built on the activism of HIV and AIDS – the desire to do the right thing. Monkeypox is also built on that advocacy and it's built on that activism.
I think the world owes a debt, not only for the solutions in HIV/AIDS, to the community affected by that disease more than anyone, but we now owe that same debt of gratitude for the same approaches on equity and inclusion, on getting rid of stigma, on … countering misinformation and disinformation. We have so much to learn from the HIV/AIDS community who really understand how to deal with these types of diseases where we need a very sensitive, a very measured approach in which we don't amplify stigma while we intervene to stop the spread of a disease.
Femi Oke: Why did WHO recently make the decision not to declare monkeypox a public health emergency of international concern?
Mike Ryan: Good question. The committee didn't say it wasn't an important event and they didn't say it wasn't an event requiring urgent and collective response. They were very clear. They just felt that the disease at this moment had not reached, fully met, those criteria in terms of severity, in terms of unusualness.
Femi Oke: Are we only preparing for pandemics that affect higher-income countries? Is that a political choice?
Mike Ryan: I think we're playing Russian Roulette at the moment in terms of many of these emerging zoonosis or endemic zoonosis. And absolutely … we are not so concerned about monkeypox because it's in west and entral Africa; it affects poor people. And if you look at the research on monkeypox, a lot of it was directed at keeping an eye on orthodox viruses in case smallpox ever came back. So, while the researchers who work on monkeypox are superb people, a lot of the funding that came in there wasn't necessarily about getting rid of a disease in Africa. It was about keeping an eye on a disease that might have a major implication in other parts of the world. There's always been this self-interest around infectious disease … some of the biggest investments in infectious disease control in the 19th century were made by militaries because they wanted to be able to keep their soldiers safe when they went into the tropics. You’ve seen that political, sort of tactical investment in infectious disease control has always come with economic interest. It’s always come with colonial interest. So the real question [is], will human ingenuity and human fairness win out over greed and exploitation?
Femi Oke: What does a failure to prepare for pandemics in low- and middle-income countries mean?
Mike Ryan: We ignore these endemic zoonotic diseases at our peril. We ignore emerging zoonosis at our peril. And what we've seen is that a risk anywhere in the world is a risk everywhere in the world. There was a time when a disease happened in a far-off place. And it would happen. It would burn itself out and more often than not, it would never become a problem for anyone else. We've now seen that a small cluster of disease anywhere in the world can reach anywhere in the world 24 hours later, and we can have a problem. It is human behaviour, human exploitation of environments, unsafe hospitals, favelas and overcrowded peri-urban slums without proper water, sanitation or vector control. It's that ability for disease to move around the world and our unwillingness to share the products of our innovation. We've never been ever, ever been at a point where we can develop countermeasures so quickly against disease. And yet, we've never been at a point where we're so unfair in the way we distribute those.
Femi Oke: Meg, is this why we have not ended AIDS as a public health threat?
Meg Doherty: It's a really sad question because, just as Mike was saying, we have the tools, we have the means, we have the community, we have advocacy, we have outrage and still we're not achieving our targets and goals for ending AIDS as a public health threat. We talk about the fact that there's political will there, that there are certain parts of the world that have not embraced the full approach to ending AIDS, meaning the prevention, the treatment, knowing one's status. Once we can have a community of people with access to treatment and a suppressed viral load, we should be able to interrupt transmission. And we've seen in certain parts of the world [the number of new cases start to go down] – the UK, Australia, that when you pair up the testing in the treatment and capturing all so that they know their status, plus you give opportunities for prevention. We must change the trajectory of new infections. And I think oral PrEP, dapivirine ring and long-acting injectable PrEP are going to make a difference. And WHO will be releasing new guidelines on prevention and long-acting cabotegravir at the International AIDS Conference in Canada.
Femi Oke: Is there any hope for an HIV vaccine?
Meg Doherty: The mRNA vaccines that started out with work in HIV – and developing those for HIV and transferring them over to being readily utilized and a huge game changer – are a huge intervention for COVID. They're now starting two trials of different kinds of mRNA vaccines for HIV. If those come on board, and if they're neutralizing – I think we really need a neutralizing vaccine, that is a vaccine that actually protects a person so if a person encounters a virus like HIV or any other virus, they have already developed enough antibodies to protect them so they won't become infected at all – that could be an answer to ending AIDS in our, in my lifetime, I would say.
Femi Oke: Can we end AIDS without a vaccine?
Meg Doherty: Do I think we can do it without a vaccine? I think we can get pretty close. I remain hopeful.
Femi Oke: Communities are integral to that hope Meg talks about.
Our next guest, Rena Janamnuaysook, has experienced issues of unequal access and stigma first-hand. Like Patricia and Eric, she's creating on-the-ground solutions. Rena’s experience as a transgender woman gives her a deep understanding of the issue she works to address.
She is a programme manager for transgender health at the Institute of HIV Research and Innovation in Bangkok, Thailand.
Rena was instrumental in establishing the Tangerine Clinic, the first transgender-led health clinic in the region. When COVID hit, she continued to find solutions for issues that COVID-19 worsened.
Rena Janamnuaysook: I think it's really had negative impact on our transgender clients, especially during the first wave of COVID-19. So I think it really limited access to HIV services at that time.
We were able to rapidly adapt our service provision. We quickly developed standard operating procedures on telehealth so that healthcare providers can have virtual consultations with clients for any clinic visits or any other follow-up visits. And we also developed and worked with the postal delivery companies and agencies to do the ARVs or PrEP, or even hormones and medications by postal delivery. And we were even working with the Grab Bike in Bangkok to deliver the medications,
Femi Oke: Rena and the Tangerine Clinic have pivoted at the local level to address the issues that globally continue to hamper our pandemic responses.
Rena Janamnuaysook: We have to adapt ourself to the new pandemic or to any challenging situation that is coming in the future. And this is an opportunity for clients to be empowered of their health. They can control their health in their own hands.
Femi Oke: Rena and her team took the adversity of COVID-19 as an opportunity to innovate. We can and must learn lessons from communities on how to adapt and navigate issues of stigma and unequal access that parallel pandemics bring to the fore.
Rena Janamnuaysook: Community engagement is very important. We should consider or take community engagement at every stage of our work.
Femi Oke: This spirit of collaboration shows us how to navigate future pandemics.
Patricia Asero Ochieng: Communities have the possibility of doing mobilization first. Communities have the answers, but nobody thinks of working with the communities first. It is the scientists, the doctors, the clinicians, the world leaders who forget that the communities have the answers … that if we work together, then we are able to get there. That is what is lacking.
Femi Oke: Undoubtedly pandemics heightened issues of unequal access. Whether it is life-saving HIV treatment or COVID-19 vaccines, we must do better.
While we may not have learned all these lessons yet, promisingly, there are hints we may be getting on the right track.
On 10 June 2022, the White House convened a call with representatives from around 70 community groups to address the recent monkeypox outbreak. Peter Staley, a long-time leading HIV activists said,
“Imagine if the White House had convened a similar group in 1981, how different things might have been for HIV.”
If you are listening to this episode before 29 July 2022 and want to learn more about issues of unequal access, COVID-19, monkeypox and the latest scientific breakthroughs in the HIV response, attend the 24th international AIDS conference, AIDS 2022, virtually or in person in Montreal.
I'm Femi Oke for the IAS, International AIDS Society's podcast, HIV unmuted. And you can't keep us quiet.