40 years of the HIV/AIDS response

Chris Beyrer of Johns Hopkins University, Shannon Hader of UNAIDS, and Peter Hayward, editor-in-chief of The Lancet HIV, reflect on progress made and barriers still to be overcome four decades on from the first reported cases of HIV/AIDS in June 1981.

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Transcript

This transcript was automatically generated using speech recognition technology and may differ from the original audio. In citing or otherwise referring to the contents of this podcast, please ensure that you are quoting the recorded audio rather than this transcript.

Gavin: Hello, welcome to this special episode of The Lancet Voice. I'm Gavin Cleaver and with my co host Jessamy Baganal, we're so pleased to have you here. June 2021 marks 40 years since the first reported case of HIV in a medical journal and to mark this anniversary we're publishing lots of content across The Lancet and The Lancet HIV journals, all of which you can read online at thelancet.

com. On The Lancet Voice, we're taking this opportunity to talk 40 years of the HIV AIDS response with people at the very centre of the field and talk about their reflections on four decades of the HIV AIDS pandemic, where we've been and where we're going. I'm really happy to be joined firstly by Peter Heywood, Editor in Chief of The Lancet HIV, who'll be sharing his thoughts throughout the podcast.

Later on, we'll hear from Dr. Shannon Hayder, who's the Deputy Executive Director at UNAIDS and Assistant Secretary General of the United Nations. But first, I spoke with Professor Chris Beyrer, Professor of Epidemiology at the Johns Hopkins Bloomberg School of Public Health, and the former President of the International AIDS Society.

Professor Chris Beyrer, thanks so much for joining me here on the Lancet Voice to share your thoughts. We're talking on quite a sombre and tragic anniversary, really, it being 40 years since the first discovered cases of HIV AIDS. What are some of your reflections? On the last 40 years, 

Chris: first of all, I think it's been an extraordinarily long time.

And when we think, because we're all in the COVID era about the speed with which we have been able to develop safe and effective vaccines and begin to get ourselves out of this pandemic, at least in the countries where there's access, you reflect on the fact that after four decades of HIV, we're still not done.

with the pandemic. We still have both epidemics, a whole regions where the virus is still expanding like Eastern Europe and Central Asia, Middle East, North Africa. We still have sub populations, for example, in my country, where the epidemic in the United States is now very concentrated in men who have sex with men, particularly minority black and Latino.

Men who have sex with men and in transgender women, particularly of color that are stubborn and persistent and where HIV incidence is not declining. In fact, it's in the last several years been rising, particularly among Latino men who have sex with men. So we have made enormous advances. We have of course now turned this into a chronic manageable disease, infection.

We have powerful tools but we really have not succeeded in some of the other key elements that have always bedeviled the HIV response. It was because it emerged first in gay men in the West, although that turned out not to be the actual epidemiology. We've always been haunted by homophobia and we still are.

Gavin: Conversely, if you think back over the last 40 years, what are some of the times you thought to yourself, yes, we're really making progress now? 

Chris: I think the signature event, the most important event really, and it, People often forget how long the period was from the discovery, that June 5th, 1981, until we had effective therapy, and that was really the first triple therapy, the triple cocktail.

And that was 15 years, without effective treatment, and a huge proportion of those people did not survive until till triple therapy, but that was a sea change. It was announced. The data were announced at the international AIDS conference. That was that summer of 1996 in Vancouver. And I was living and working in Thailand at the time.

And I'd heard about this and I'd read about it. And we saw in, the scientific literature that this was happening. It seemed so extraordinary, but I hadn't seen it. There was no therapy in Thailand. So I got to that conference and not only did I see the data, but I actually saw some friends and a former lover of mine who I had said goodbye to and just as always thought, I will never see him again.

And he walked by me on the street looking healthy. And and I, it was such an extraordinary moment. So that, that was I think really the first huge change. The second was again several years later, which was that we were in a very painful period where we had triple therapy. It kept advancing. We kept adding more drugs.

It got better and better. It got easier. The pill burden went down. We we had new classes of drugs and people were really doing well in the U. S. In the UK, in the European Union, in Australia, in a handful of countries, and really only a few low and middle income countries have committed to treatment.

One was Brazil, where for a long time, More than half of all people in low and middle income countries on therapy were Brazilians. It was just one country had committed, Thailand then subsequently committed. But really, we just, we didn't have a mechanism and the dying just continued. If you spent time in Africa in 2001 or 2002 or 2003, it just seemed overwhelming.

that this continent was the most affected place. There wasn't any treatment. People were still dying in extraordinary numbers, leaving all these orphans. And really, it took a global commitment to making antiviral therapy available. And then a real change in the way things were funded and structured to create this two tiered pricing system that came out of the Glen Eagles Summit.

Gordon Brown played important roles in that. And ending up with basically a G8 resolution that AIDS drugs would cost, the full fare in the G8 countries. And they would be generic and cheap and manufacturer licensed to those low and middle income countries that could make them. Brazil, Thailand, India, overwhelmingly with the generics, South Africa.

And by 2005, treatment really started to become available. And just like in the West, the dying dramatically decreased. People started to live. We saw that Lazarus effect. People getting up off their deathbeds, literally and going back to school and back to work and back to parenting. It really was an enormous change.

I would say that the third biggest change really and one that we've yet to capitalize on enough was the realization, the understanding scientifically. that antivirals could also be used for prevention. So we did that first with prevention of mother to child transmission. It was clear that it had a huge impact.

We started to reduce pediatric AIDS, which was a terrible disease. And then, we figured out that it also could be used to prevent sexual transmission. Initially with gay men, bisexual men. And trans women, but then eventually also a series of heterosexual studies, one trial among people who inject drugs, and the very consistent finding that if you use these antivirals as prescribed, you really can prevent HIV.

We're still, it's 10 years after that insight. It was 2011 was the first PrEP trial, the IPREX trial. So here we are 10 years out from that. And we still have fewer than a million people worldwide on PrEP. So we're not anywhere near utilizing the power of this tool. But we have it. And it's only going to get easier to use it.

So now we're going to have injectables. We have implanted vaginal rings. We're, we have long acting antivirals coming along. Maybe once a month dosing. For PrEP maybe a, every six month injection maybe implants, there's an array of these technologies, but unfortunately what we see consistently is that the people who are still getting infected and who could really use these technologies are the last in line to get them, and that part of it, the social determinants of health, the social justice issues, the human rights issues, we have signature failures across the board.

We have not decriminalized sex work. We are still punishing substance abuse and treating it as a criminal offense and committing to mass incarceration, which is not, by the way, effective therapy, either for HIV or for substance use. We're, it's still so hard in so many countries for a gay man to get. Any kind of real care, testing, prevention, treatment in safety and in dignity, which is so fundamental to being able to make headway.

We still, we've found HIV stigma to be just an intractably difficult problem. In so many places, and it still is enormously difficult for men, women, gay, straight, drug users, and not to disclose their status, live with their status, seek care for it, um, the stigma around this disease, We thought, honestly, that treatment was going to make it go away, and that turned out not to be the case.

Gavin: It's so fascinating to hear so many of your reflections on it, and so interesting and wonderful, of course, that it's given so many people such a, as you said, a sea change in quality of life over the last 40 years, some of these advances, but also these social justice barriers, of course, still exist.

What I think it makes me really reflect on is the kind of almost slow grind of the last 40 years in improving the condition of people with HIV AIDS. How would you contrast that with what almost seems to be the kind of big bang of COVID research over the last 

Chris: year? It turns out that HIV first of all, it's a lentivirus, so it is a long, slow latency.

Before we had treatment, the average time from infection to disease, to clinical AIDS, was 11 years. And then the average time untreated from clinical AIDS diagnosis to death was about another two years, 20 or 22 months. So it was a 13 year natural history. And it has a relatively low transmission probability.

Maybe one to three per thousand vaginal sex acts between men and women. So a relatively low transmission probability. So HIV, it took 70 years to reach epidemic potential from when it crossed over from the zoonotic host chimpanzees to humans. And it is a long, slow burn.

And where we are with antiviral therapy, triple therapy, is that now you achieve viral suppression quite quickly. The new drugs are just extraordinary. Six weeks and you're virally suppressed and you're no longer infectious for your sex partners or your fetus or infants. But. The minute you stop, the virus comes roaring back.

People have to do this for life, and the supply chains have to be there for life, and we have to keep it going. Not only is the epidemiology that of the lentivirus, and the transmission probability relatively low, But also, the treatment is a chronic, lifelong treatment. And we now, the, the first generation of long time survivors, these are people who were infected before 1981.

1981 is when we discovered HIV, but it was circulating in human populations in the 70s. Some of those people have been living with HIV for 40 and 45 years, and of course they have all of the challenges associated with aging in general, but also aging with a chronic viral infection. So they're about, on average, 15 years advanced in aging.

Many of them are having, an array of. Accelerated aging complications hip replacements, cardiovascular disease, atherosclerotic disease, dementia just an array of outcomes, both of chronic therapy and particularly the early therapies, but also, just the long term complications of living with a chronic viremia, even a low level viremia.

In contrast, the epidemiology of COVID 19 is that when it emerged, it appears to have been fully adapted to human transmission. And why that is, is a very important question. Somebody's going to get the Nobel Prize for figuring that out. But it was, and the speed of its movement. Both within China and then very quickly outside of China and all around the world was just breathtaking.

As an infectious disease epidemiologist for coming on 30 years, I've never seen anything like that. And what people, of course, refer to is not so much HIV. But the 1918 influenza pandemic, that the same sort of force of infection, speed of infection, on the other hand 1918, basically that epidemic burned through human populations until it ran out of susceptibles and we are in such a new era of biotech.

That the investments in treatment, but also more, more to the point in the vaccines from decades of investment in basic vaccine research put us in a position basically, January 6th of 2020, the Chinese published the sequence online the virus was harvested from a patient in Washington state in the United States.

In a matter of weeks, literally less than a month that was turned into a spike protein insert that could be put into a messenger RNA. I got involved in the trials in April, joined Operation Warp Speed as a senior scientific liaison to work on the phase three trials, on the efficacy trials.

And, when the NIH announced this, that we were going to do five efficacy trials with 30, 000 people each in the next six months, and there was no limit to the funding, it was just literally breathtaking. It just seemed impossible. In, in HIV, we've always done kind of serial.

phase three trials and you wait five years and then you know failure and we start another one and then it that fails and you know it's been a such a long slow process and a very frustrating one. With COVID, the first one that the NIH did, of course, Pfizer went on their own. They decided they have the resources to do their own efficacy trials, but we really supported Moderna.

And they essentially are very similar products. They're almost the same vaccine, the messenger RNAs, 94 and 95 percent efficacy and extraordinary safety. Hello, home runs with the first two and then subsequent home runs with Johnson and Johnson, albeit, the very real, very rare complications of this clotting and bleeding challenge AstraZeneca also, having some of those challenges, but still.

We're now in a position where we really in an unprecedentedly short amount of time have multiple vaccines and we still have two more in the pipeline. We're still waiting for the protein subunits. So there's a Novavax product and there's Sanofi Pasteur. If those work as well, we'll have three different platforms.

mRNA the adenoviral vectors, and the protein subunits. Unprecedented. 

Gavin: But finally then, what's next for you? What's next for the field? And what are you looking at over the next 5 to 10 years, 

Chris: as we discussed earlier the science is really exciting. It's thrilling. And we're, we've made major advances.

Treatment, now is down to a single pill once a day. The pill burden problems of the past are pretty much gone. We don't have to put people on all of these other drugs for opportunistic infections, because if you control viremia, people control opportunistic infections on their own. So that's really dramatic.

We still do see the AIDS related malignancies as a big problem, and it isn't clear that effective therapy, that's probably the one area the friends and patients and people that I've known who've died in the last five or eight years have all died of lymphomas and other HIV related malignancies.

So that is still an important area. But I think the biggest issue going forward is this challenge of the social determinants. So the newest UNAIDS report is just out recently, is that more than half of all new infections globally are in key populations. So gay men, trans women, sex workers of all genders, people who inject drugs, and their sex partners, right?

So that now is the majority of HIV. And in many African countries, it's the majority of new infections as well. It's not just, an issue for the West or Asia. And the reason why those people remain vulnerable is really because in so many places, they remain criminalized. Stigmatized, excluded from society, at the margins, and really marginalized in health care systems.

Which is something we can do something about. So I think the next challenge what's really ahead of us in the field is that we've got to start doing better for the social determinants that really matter. And I think that has to also be understood fundamentally. As a human rights, social justice issue.

We've tried to destigmatize HIV and say at some fundamental level, that everybody deserves care and that nobody should be excluded because of their HIV status. And that, that has gone pretty well. But when you look, for example, at why Eastern Europe and Central Asia, why is the virus still expanding there?

First of all, Eighty five percent of all those new infections are in two countries, which is Russia and Ukraine. So you really have to ask, why Russia? Because that is the country, which, by the way, has universal access to antiviral therapy for its citizens. So there's really no excuse. And the answer is that it is Russia's response to people who inject drugs that is the fundamental driver of that epidemic.

They remain criminalized, they refuse to allow modern substitution therapy, they do not have methadone or buprenorphine. It really is a structural reality that the policies of that regime, the Putin regime, are maintaining the epidemic. And we see that in many countries. We see, in my own country, in the United States, the exclusion of African Americans and other working poor folks from the healthcare franchise is at the heart of why our epidemic continues to be so severe.

That, I think, is the great challenge going forward. And it is likely to really also be, if we don't achieve the goals that everybody has set for 2030, in my view, it will not be because we have not advanced the science. The science is spectacular. It will be because we have not been able to do better on human rights and social justice for people at the margins.

That is our biggest challenge. 

Gavin: It's really fantastic to hear that as a priority. And yeah, just to say, Professor Chris Bayer, thank you so much for speaking with the Lancet Voice today. 

Chris: Thank you. It's been wonderful. I've I really enjoyed talking to you, Gavin, and I sincerely hope that I don't know that I'll survive the next 40 years, but it would be really wonderful if we could make this progress in the next decade and really start to turn this around and and get control of the HIV AIDS pandemic in our lifetimes.

I do think we have the tools to do that.

Gavin: As I mentioned before, I'm joined by the Lance HIV's, editor-in-Chief, Peter Hayward. Peter, we've been hearing from Chris there some very personal and striking thoughts about 40 years of the hiv aids response. What are your reflections on this milestone? 

Peter: One thing that Chris raised, and one thing that I've been reflecting on a lot while we've been working on this project, looking at the last 40 years of the HIV v aids response, is it actually really, the hiv aids.

pandemic has been going for a lot longer than that, Chris mentioned that it was actually HIV probably first infected people 70 years before the first cases were recognized by science, but actually prior to that, there would have been so many people who were beginning to notice things were going wrong.

There were people would have died of HIV and their loved ones and their family would have noticed that something was going wrong. And indeed you did see, prior to the first sort of medical write ups of what came to be known as AIDS and HIV. There were people in various communities writing about the, this disease, this con syndrome affecting their loved ones and affecting their communities.

And, there's records of that in, in newspapers from New York at the time. But actually, you can imagine that this would also have been happening in communities. in all sorts of places around the world. So in the places that we realize we're most affected by HIV and AIDS. When we began work on this project, I was really trying to work out what do we call it?

Because obviously, HIV and AIDS started way before 40 years ago. And so many people were affected by it before then. But actually, that marker of the first report In the MMWR in June in 1981. It says the useful marker for scientists and for the health response. So that's why we called this 40 years of the HIV AIDS response.

And yeah, I think. It's, um, it's really remarkable to reflect on the achievements and how the response has changed healthcare and global health over the past 40 years. So much of the insights and science and research that has gone into and come out of the HIV AIDS response now informs so much Of global health generally, and particularly we've seen that in the past year with the response to Covid.

As Chris said, the advances in treatments have been remarkable. We are now at such a place where, almost cliche to say we've gone from HIV an HIV infection being a death sentence to a manageable chronic condition if people can get treatment, and that's really testimony to the incredible scientific advances over the past 40 years.

But also most importantly. Testimony to the activism and the driving forces of the communities affected and the people living with HIV. In the early days after having realized the problem politicians were, I think, quite slow to engage. And it was really community activists, people affected by and at risk of HIV, who drove the change.

And also the people caring directly for them. It was very much a grassroots movement. It's a movement that got got the HIV response going. And I think it's really important to remember the role of activism, about the importance of community engagement. 

Gavin: Of course, talking of community engagement, we should mention Atlanta HIV is in conversation with podcast, which launched last year.

has been a great success so far. And I wanted to talk to you about what you've noticed changing in the field in the last seven years since you've been editor in chief from the launch of the Lancet HIV. 

Peter: Yeah, so since we launched the Lancet HIV, I think it's been a time of, I think, a lot of consolidation of the deployment of the tools that have been developed.

Prior to the launch of the Lancet HIV as Chris reflected on in his interview, we had all these advances in treatment in realizing that viral suppression would prevent transmission, in realizing that viral suppression would allow people to, to live healthy lives when infected with HIV, but also, scientific advances in prevention, not just through treating people with HIV, but in using antiretrovirals.

As prevent, as prevention to stop transmission of HIV, but actually, and so the Lancet HIV was launched after those major developments. But what I think has really been interesting to see over the past few years is working out how to deploy those how to use them efficiently, how to get how to get these effective treatments to the people who need them.

Now, obviously as both Chris and Shannon said in their interviews, there's there's still a hell of a lot of work to be done in getting. In getting treatments to all the people who need them. We understand so much more now about how best to do that than we did seven years ago. And of course there are, there are ongoing improvements in those.

The drugs that are widely used now are less toxic than they were at that time. And there are new technologies and Changes to those drugs and some new drug categories coming in. The idea of long acting treatment is something that's incredibly exciting and can be an incredibly important advance for helping people to adhere to treatments and also long acting, using those long acting drugs as prevention as well.

And these are I think these are really important advances that are happening in recent years that we really, that offer a lot of hope. 

Gavin: Thanks, Peter. And we'll be chatting more after we hear from Dr. Shannon Hader about putting research into practice in low and middle income countries. And my co host, Jasmeet Baganal, joins me for this interview.

We're delighted to be joined by Dr. Shannon Hader, who's the Deputy Executive Director of Programme at UNAIDS and is Assistant Secretary General of the United Nations. Dr. Hader, we're talking about a sombre anniversary, really, 40 years of HIV and AIDS. What are your reflections on the last four decades?

Shannon: So much, really, and I agree with your terminology, sombre, 40 years of an epidemic with no cure, no vaccine is not something to celebrate. Yet again, I think when I look back over the four decades first thing that comes to mind is really tremendous achievements and tremendous progress in some areas in the science, in the.

service delivery in the treatment options in understanding prevention. These are our huge achievements. We wouldn't have thought even 20 years ago that we would have the number of people worldwide on treatment that we have right now, much less setting these bolder targets to reach 95 percent of all people living with HIV by 2025 we wouldn't have thought even 15 years ago that effective HIV treatment would not only be just one pill a day in many cases but that it would also be something that made you untransmissible, undetectable equals untransmissible that effective HIV treatment can.

suppress the virus and body enough to keep it from transmitting. So these are huge achievements of science, huge achievements and policies and politics that have led to the investments that let us do this and really huge achievements in advocacy. And the investment in client centered, community led roles in health and healthcare.

But that also, to me, makes this dark contrast of what we haven't done yet even More tragic. We have seen successes in countries all over the globe that are different economically, geographically, epidemiologically, which means there's not just one pathway to success, but we've also seen countries and communities that are left very far behind.

And when we have the tools. To reach people, to save lives, to turn off prevention, and only some people are really getting to benefit from those science, that, those tools, the policies that make them accessible, then I think we have to really recommit ourselves to interrogating these disparities, these inequalities and really recommit to closing the gaps.

Gavin: Yes, of course. So talking about inequalities, looking at tackling HIV and AIDS in low and middle income countries, what are some of the key current considerations for you? 

Shannon: Yeah, I think there's a couple of things. One is we really have to look at the specific gaps in each country. There's been Such a unevenness in progress that we can't say what's left to do is based on your country's income status or demographics or anything like that, that what's left to do is very different country by country.

But that also means what's left to do is not a one size fits all kind of solution. I think each country needs to really be able to understand where the disparities in the response are so that solutions can really be made. One thing we don't talk about all the time is, in fact, there's a lot of questions about, how do we support upper middle income countries to make as much progress as they need to.

When we look at the new projections of the total resource envelope of what's needed for the next five years of the HIV response, over half of the resources needed are needed in upper middle income countries countries that probably have the money to fund their own HIV response. And yet in a number of these cases there are countries who maybe have not prioritized and won't prioritize the investment in key populations and in reaching some of the people who really need to be reached.

And so how we support different responses in different countries And really make sure that these science and technologies do become accessible to all. Make sure some of the social determinants or societal enablers that are important for allowing everybody to be able to access what they need are addressed.

Ensure that we've got enough leaders political leaders, community leaders, thought leaders. Who can help their own countries really push the envelope on this. 

Gavin: The Lancet's published, of course, some landmark kind of trials and research in HIV over the last 40 years. But we really wanted to talk to you about implementation.

It's it's such a problem translating this research into effective policy. What for you are some of the major breakthroughs and what are some of the major challenges of translating HIV research? 

Shannon: Yes, I think we've had different challenges along the way. And some of the major breakthroughs we've made I think have been when as a global community, we've said, cost shouldn't be the barrier to access the tremendous amount of work that was done, but the tremendous amount of leg time it took going from, for example, The availability of effective HIV treatment and that was available in wealthy countries and, getting the commitment, the political will, the engagement with pharma and intellectual property and funding mechanisms that it took to make these drugs available in low income settings.

That took a decade the first time but we learned a lot and that, has now become a norm. But as we've moved forward, we come into new barriers of translating sort of the research to policy and program. I think when it comes to prevention, sometimes we have harder barriers to overcome and translating the research to prevention.

When it comes to treatment it's funny, but, most people. listen to the medical directions and say, okay, I get what the science on treatment says. That makes sense to me. We have politicians around the world who understand what 90 90 90 means in terms of, 90 percent of those who are positive know their status, 90 percent of those are on treatment, 90 percent of those are virologically suppressed.

When it comes to HIV prevention suddenly it's everybody's an expert. And a lot of time we have some traditional responses or some approaches from decision makers that feel like they're not science based They're not evidence based there. If people just told me did what I told them we would have effective hiv prevention And so I think some of these deeper seated digmas impressions political agendas legal frameworks social norms and inequalities Many of these can be a huge barrier of the uptake and the scale up of effective new interventions, whether it's PrEP and pre exposure prophylaxis, or whether it is really, investing what it takes to combat gender based violence, for example.

And so that's why we're really excited that this new global AIDS strategy for 2021 to 2026 has a whole new section on targets for societal enablers. We're calling the 10 10 10 target. So reducing below 10 percent some of these real barriers to taking policy to action, whether they are criminal laws, whether they are failure to address violence.

And provide safe environment, whether they are social norms on gender and gender identity. I think reducing some of those barriers will give us a much better track record of really translating the research into policy and programs at scale. 

Jessamy: It's so interesting that you say that, Shannon, because obviously, AIDS exceptionalism has been an issue.

We've published about it in The Lancet, and I suppose what I'm interested in is it has to be incorporated into, universal health coverage, wider inequalities and stigmas, as you say, and inequities. But there are also these key populations that need to be targeted, and how do you strike that balance?

How do you get the balance right? You're talking about kind of Laws, is it the law? Is that one way that we move forward? I'm just interested to 

Shannon: Yeah, I don't think there is one side, a magic intervention that's going to fix all of that. But I have to tell you, I am almost re asking myself is what do people mean these days by AIDS exceptionalism?

Yeah. Because it's meant different things over time. But recently, it almost feels like it means that people think the attention to HIV is out of proportion, and it's too much, and that people living with HIV or at risk for HIV are somehow getting too much. And yet, that's certainly not the case.

Look at how marginalized, discriminated against, the persistence of many of these barriers. I think we have to really look at how integration of HIV services in building some of these broader systems are not about making the issues of people living with or affected by HIV invisible, but rather they are supposed to be leveraging these services and making them work to people.

And I think where we've really seen a real opportunity for this. Is what we've learned about the community led infrastructure, actions of people affected by the disease for people affected by the disease organizations run by people affected, we've certainly had a lot of that since the beginning of the HIV epidemic, and that's really grown the response.

And it started because the traditional healthcare system wasn't providing the care, even the support in dying when we had no treatment for HIV and communities had to come together and start taking care of their own. And they ultimately became the most up to date on their own science and the educators of the traditional health infrastructure, et cetera.

But where we've really even seen more now, I think, is the community led infrastructure. The idea that community leaders are yes part of service delivery, but they're also part of governance and decision making being at those tables, and they're also part of accountability, you know the monitoring a community level that says hey is what's been promised being delivered that kind of community led infrastructure is not a norm.

of a traditional healthcare infrastructure or a traditional system for health. And to me, that is the biggest liability of not envisioning a new kind of system for health that would make HIV exceptionalism or, not an issue anymore. That would make mainstreaming really more effective.

We've seen This challenge show up in COVID, so we know it's not part of the core infrastructure. We have seen perhaps begrudgingly or out of necessity certainly countries turn to community led service providers to help provide agile services and to reach people under COVID, especially when they're out of the traditional, facility based infrastructure, but what we've also seen that they've created no space at the governance and decision making tables for the same community led organizations and deciders, and they really haven't been interested in the community led accountability and monitoring.

And so I think if we're going to talk about a system for health that responds to the needs of people living with and at risk for HIV, It's got to include making community led infrastructure part and parcel of the full system for health and not something that's exceptional or an add on. 

Jessamy: That's such a great answer and it answers my next question as well, but I might just ask it anyway because it looks at it in a slightly different way and maybe you can explain it.

You've obviously got this wealth of experience about translating research into, a wide and varied number of places. What has that taught you? And I'm thinking specifically about COVID 19 and other things. In terms of how you translate these, quite sterile academic pieces of breakthrough science, how you actually translate them.

You've talked a lot about the community, but are there other things that, that you think that really can be applied from all of that experience that we have with HIV. 

Shannon: It's not magic, right? But I think we've recognized that publishing in a journal alone is not going to necessarily sway politicians, policymakers, those who decide where the money goes and those who prioritize who gets what services.

So there has to be more of a, more of a continuum or a team or a concerted effort to make sure that What is critical from the science? And that includes implementation science, right? Where we've already done some of that translation to practical on the ground, making science work, right?

But then to take that to be able to convince sometimes it's service providers and national program deciders. Who need to be convinced that it's worth it to do something new, you know Overcoming that barrier is actually I think sometimes bigger than we expect, you know Even with dedicated providers getting providers decide it's worth it to do something new And getting the policymakers who provide that environment convinced.

It's worth it To do something new, an example of how difficult this can be is, W. H. O. Guidelines have had evidence based recommendations for years now about differentiated service delivery, evidence based strategies that make it easier for people to be successful in their care, multi month dispensing of drugs so that you get six months supply instead of having to go to the clinic every month or every week, things like that.

Yet until covid. We saw a lot of countries who either didn't adopt some of these differentiated evidence based service deliveries, or they adopted them, but they didn't actually put them into practice. But then we saw when there was a huge need because of fear of, the traditional infrastructure being overwhelmed, policies and practices changed within a couple of months that we've been trying to change for years.

And so I think as part of translating science and evidence to real practice, the advocacy and the urgency that's got to come from communities, from providers. From the scientific community, we're beyond the point where, more studies are needed is an acceptable way place to leave your journal article, right?

But there has to be almost a consortium of different experts and different advocates who can speak to politicians can speak to those making the funding decisions can speak to providers and can, ideally. Start all that with creating a lot of demand in communities themselves that provide an urgency for action.

What are you hopeful about now in the next five to ten years? Wow. You know what? I am hopeful that we have more tools than ever before and we have a bigger understanding than ever before of who is being left behind. I am hopeful, and this is a little bit of a silver lining, I am hopeful that because the world has, I think, seen so much over this past year with COVID about not just what it means to have, a pandemic, which we've had 40 years of a pandemic for HIV, but something new, get some tensions, right?

But that even within the COVID pandemic, social determinants of health, longstanding inequalities on social and health issues. have profoundly affected who gets sick and who dies. And I think that's become visible for the first time in a long time to people who aren't experts in HIV. And I think that awareness and that sensibility hopefully will help us with the heavy lifting we've really got to do this next five years.

which is no longer one size fits all. It really is understanding who's most effective, least reached, and being, incredibly intensive and targeted, and making sure we get the services to those people who are being missed, and hopefully that we alleviate these social and legal barriers, these intersecting inequalities that are really Causing certain people and places to be missed.

I'm optimistic that there is more awareness and a bigger will for that than maybe there was even a year ago. And that's going to be critical. 

Gavin: I actually just wanted to finish up by asking your reflections over the last 12 months as well on the COVID 19 pandemic and how you think that, has that made you think about HIV AIDS in a kind of different way?

And how have you thought about it in relation to your work with UNAID? 

Shannon: In so many directions, I would say it's a two way street, right? The experience from HIV has certainly made me, look at COVID in certain ways that maybe not everybody was looking at it, with. And we've seen around the world how many folks who are leading national and local COVID responses are from the HIV response.

It's, we've had a lot of crossover there and seeing some of the, lessons we've learned in HIV, but the unfinished business of them, whether it's that community led organizations need to be part and parcel of the response, whether it's the only truly effective public health response is going to be a rights based response that doesn't send people into hiding and avoidance.

Those things are really important. But coming then the other direction, I think, because it really is a two way street. I think one of the other things that's really convinced me we have more to do and, shouldn't let up is how quickly communities and the world can respond. When the urgency is visible and tangible, it's made me realize many of us, the collective HIV response, somehow we've lost communicating the urgency in this pandemic.

And that's a big deal. I got a question from a group recently that says now that, HIV is just a chronic disease like hypertension and diabetes, you really need to talk about ending AIDS as a public health threat by 2030. And I thought, oh my gosh. We started talking about AIDS as a chronic disease for two reasons.

So that individuals realize that AIDS was no longer a death sentence if you got into care and got treatment. And second, to convince politicians and decision makers that, these are long term investments in taking care of people. But, Really, we are an infectious disease. We're a global pandemic with no cure and no vaccine.

And even with that, we're trying to end the epidemic. So I think this last year has also reaffirmed to me that we haven't done ourselves. a real service overall by, somehow convincing policy makers and decision makers that, yeah, we know what we're doing. It's all done. It's just a chronic disease.

It's just, think about it like diabetes or hypertension. It's no, this is, HIV is not part of natural aging. This is not the natural course of, becoming an adult. And it's something that we need to continue to drive down with the tools we have. And we have to continue to put out scientific expectations.

For a cure, for a vaccine, for what can be a much longer lasting end of the epidemic. I 

Gavin: think that's a great answer. Thank you so much, Shannon, for speaking with us today. We really appreciate it. 

Shannon: Thanks for having me.

Gavin: So I'm joined again by Editor in Chief of the Lancet HIV, Peter Heywood. Peter, we've heard quite a lot there from Shannon about translating research into policy and into action. What are your thoughts on the gap between research and action? 

Peter: We recognize this so often when talking about how there's so much of health care is political and societal.

And the key barriers to providing care to people in most settings are not necessarily a lack of interventions to help people. It's not that people don't want the interventions. It's that the key populations, the key people, the people who need the interventions. are excluded from access to them, be that by societal structures, be that to do with stigma related to to the things that put you at risk of HIV, or actually having HIV itself.

And actually, I think, as Shannon said, what needs to happen really is creating a political atmosphere and societal atmosphere that allows people to access the technologies that we have. And, there's a lot of work going on in that, in involving communities and in activating communities and given how people are marginalized and how people are treated, when you talk about as As people talked about drug users in Eastern Europe and Central Asia or gay people in Sub Saharan Africa.

The situation there does not allow people to act with healthcare providers in an ideal way. And they, and until the politics around those issues change, and until the societal norms around those issues change, then we these barriers are just going to remain. And we can't remove them.

Gavin: Obviously, you're at the forefront of publishing HIV research. Where have you noticed it going recently, and where do you expect to see it going in the future? 

Peter: A lot of the research now is related to, yeah, as I said, deploying the interventions that we have and to improving those.

I think, there is, as I mentioned, there's a lot of excitement, I think, around different forms of drug deployment. Long acting therapies, be that by injections or implants, and using those for prevention as well. Long acting long acting prevent, preventive measures. But then I also think, there's still a lot of interest in cure research and vaccine research.

With the tools and technologies that we have to tackle HIV at the moment, we can do so much. The goals of ending HIV and AIDS as a public health threat, that's entirely achievable through the tools that we have and political change. That could be achieved, but cures and vaccines would make that so much easier.

And, there's been so much interesting work over the decades into cures and vaccines. The development of these has always been frustrated. Yeah. But there's still so much interest in them. I think I think there could be exciting developments in that, particularly in terms of vaccines. I think there's so many interesting studies going on in vaccines and immunotherapies for HIV.

I think that's a really interesting area of science to watch over the coming years. A specific question. 

Gavin: What do you think is holding back the wider rollout of PrEP at the moment? 

Peter: It's a thing that will vary from country to country, from situation to situation. It's a PrEP's a drug, so there's, financial constraints in certain situations.

Knowledge about PrEP is not as widespread as it could be. So much of the advances in the HIV response have been made. because communities have demanded them. So I think expanding knowledge about PrEP and creating demand for PrEP could help uptake. But again, the the groups that would benefit most from PrEP are often marginalized, are often disadvantaged, often disengaged from healthcare, have all these barriers that we've already discussed.

I think PrEP's a wonderful tool, but there's obviously, economic and societal constraints. that limit it's uptake. In the States and in the UK, PrEP use is quite widespread amongst richer, educated, typically white, gay men. But there are lots of other populations that might benefit from them.

Black populations, poorer populations, um, and women as well, PrEP use amongst women is not as not as widespread as it could be. It's really We talk about PrEP in terms of preventing HIV, but I think, PrEP needs to be seen as a For people in certain situations, PrEP is a tool to maintain good health.

I think sometimes the framing of PrEP could use work because potentially, using treatments for HIV, using prevention for HIV. Can be viewed as stigmatizing because of the stigma surrounding HIV and that's something that needs to be tackled as well. Increasing knowledge and reducing stigma around PrEP use, I think.

Gavin: Of course, I'm contractually obliged to ask a question about COVID 19. I did think it was quite interesting how Chris and Shannon's answers about COVID 19 and HIV research differed. Chris obviously pointing out the obvious differences between The two viruses, but Shannon talking as well about the the kind of explosion and funding and research, and Chris touched on that as well.

What have been your thoughts over the last year, in the midst of COVID-19 in relation to hiv aids research? 

Peter: What I find really remarkable is that, people who work on HIV, the healthcare providers who work on HIV. Many of them have dedicated, up to 40 years of their life on this topic and they are incredibly passionate and committed to HIV as a subject and to helping treat people who are living with HIV, to save lives, to stop people getting HIV, and to address those societal, structural, and political barriers that Stop people who are at risk of living with HIV, living their best lives.

These people are really committed to the subject and the community. So many of them, if not basically all of them, have in the past 18 months had their attention diverted. The people who work on HIV are the same people who work on coronavirus. They're virologists. Their healthcare providers, their public health specialists, and and their knowledge gained over 40 years of the HIV response has been essential in tackling the emerging threat of coronavirus.

I think that really needs to be recognized and people have. Dedicated 100 percent of their lives to HIV and then now somehow created 200 percent of themselves to work on both HIV and coronavirus. And I think it's really important that, in recognizing that the lessons learned from HIV have been essential in the coronavirus response but there should be lessons learned, there will be lessons from the coronavirus response that will feed back into HIV going forward.

And I think one of the really interesting things that, that Shannon said was about creating a sense of urgency. Chris described the slow burn of HIV, it's 11 years on average from infection to being ill, and then two years until someone might die of illness caused by HIV. But obviously coronavirus happens on a much shorter time frame and that creates a sense of urgency, which I think, which Shannon said.

Although, we saw at the start, particularly where, you and I are talking in the UK, we saw at the start of the coronavirus outbreak here, how actually a lack of a sense of urgency got us off on the back foot in the response to coronavirus. When people refer to the pandemic now, they're talking about coronavirus.

But there are two pandemics happening in the world at the moment. HIV is a pandemic. And when we start to move on from coronavirus, if we can begin to do that at some point, what I'd really like to see is the HIV community in its broadest sense, people from academics and scientists to people living with HIV and people at risk and communities at risk of HIV trying to inspire a sense of urgency in politicians to tackle the pandemic of HIV in the same way that we've seen efforts to tackle coronavirus over the past year.

Gavin: Yeah, perhaps it can really be a benefit of us putting health at the center of so much of our lives over the last year. Yeah, 

Peter: I think, one of the great things is the increased increased science, scientific literacy of the public, really, so many people have learned so much about.

about science and about how healthcare operates and how inequalities and and societal barriers can fuel and can exacerbate a a disease outbreak in this way, a pandemic. And yeah, I think there's a, a real opportunity to say, You know what? We've got such amazing tools.

And the reasons why these tools to tackle HIV aren't having the effect they should be having those reasons can be addressed as well. You need to do this. It's urgent. If we do this now, we can end HIV as a public health threat. This is possible, but the barriers need to be addressed, and that takes, 

Gavin: I think that's a great note to end on.

Peter Heywood, Editor in Chief of The Lancet HIV, thanks so much for speaking with us. 

Peter: Thank you very much, Gavin. 

Gavin: Thanks so much for listening to this special episode of The Lancet Voice. If you go to thelancet. com, you'll be able to find a wealth of resources covering HIV, stretching all the way back to 1981.

And you can find all of that at thelancet. com slash HIV hyphen 40. Of course, as always, you can subscribe to The Lancet Voice wherever you usually get your podcasts. Thanks again for joining us and we look forward to seeing you in two weeks time when we'll be asking, what's wrong with global health? See you then.