If We Act to Remove Structural, Behavioral and Social Barriers, We Can End the HIV Epidemic With the Medicines We Already Have
A Conversation With Benjamin Young, M.D., Ph.D.
To optimize the care continuum for people living with HIV, we must optimize the environments where HIV care is practiced. That means repealing laws that criminalize and stigmatize people living with HIV and members of key populations vulnerable to acquiring HIV. For the International Association of Providers of AIDS Care (IAPAC), these are the first steps in facilitating wider access to life-saving HIV treatment, care and prevention services.
"Doctors aren't just care providers," says IAPAC chief medical officer Benjamin Young, M.D., Ph.D.; "we're the guardians of the health, and health as a human right, of the people we serve and represent." Following Beyond Blame, a pre-conference to AIDS 2016 in Durban, South Africa, bringing together HIV decriminalization advocates from around the globe, I spoke with Young about the need to change perceptions of harm from HIV exposure, the role of providers as activists and his work updating the global knowledge base to reflect the 21st-century realities of HIV.
How has IAPAC, which represents the global community of HIV care providers, been involved in anti-criminalization work?
IAPAC has been very firmly grounded in the idea of health, HIV and human rights since its inception 30 years ago. At the end of last year we published the world's first evidence-based literature review and recommendations for improving the care continuum for people living with HIV. It's not coincidental that out of 36 recommendations the first three directly address the issues of stigma, discrimination, criminalization and the legal environment in which we practice medicine, and practice the care of people living with HIV.
They also address the role that stigma, discrimination and criminalization play in the lives of people that are represented in key populations, who may or may not be living with HIV. This is germane in the context of HIV prevention and PrEP [pre-exposure prophylaxis] because, if we marginalize those populations, we hobble our abilities to effectively do things such as HIV testing and offering preventive services.
The recommendations acknowledge the legal environment, and therefore the human rights environment, around migrants and their rights as human beings to be able to move from one place to another -- which are embodied in many, many UN documents.
This is an association that has been deeply grounded in the notion of health as a human right, that marginalized populations have equal human rights, and that that extends to health and access to HIV testing, care and treatment.
I'm a proud HIV care provider. I'm an HIV doctor. And it's often orthodox to think that doctors shouldn't be activists. But this construct that I've laid out actually says, if anything, doctors aren't just care providers; we're the guardians of the health, and health as a human right, of the people we serve and represent: our patients and the patient communities. We don't often practice that but, in fact, we are human rights activists. Whether we accept it overtly or not, I think we have the opportunity to be.
Talk more about the connections between optimizing the HIV care continuum and addressing HIV-related stigma and criminalization.
In understanding the care continuum, we understand that a lot of people have difficulty navigating it. That means that we have to be doing more than we currently are to facilitate access to the life-saving therapies that we now have.
To the extent that IAPAC is an umbrella organization, I represent global health providers: physicians, nurses, nurse practitioners, physician assistants, pharmacists, case managers, lay health workers and village health workers; and I would add to that the receptionists and the janitors and the person that opens the door at the clinic. I would even extend this to elected officials, in this context. Anyone involved in care delivery, in facilities of care is, to some extent, part of the constituency that I try to represent. I try to articulate and advocate for their needs, but also to steer their activities in a way that is productive to executing the nonjudgmental, human rights-based care of people living with HIV or affected by HIV.
Central to my participation in the Beyond Blame HIV criminalization pre-conference was to inject into the more orthodox view of human rights as kind of an aspirational, humanistic thing, the message that there's now quantitative science around this, as well.
There are two notions in the context of criminalization of HIV and HIV exposures that I try to simplify to a few statements.
One is that the 21st century of HIV is different than the 20th century of HIV. We need to update our knowledge base. To do that requires understanding that HIV treatment works. Hard stop.
What does it do? HIV treatment prevents death. It prevents tuberculosis. It prevents cancer. It prevents progression to AIDS. It prevents serious infections. It prevents opportunistic infections. Hard stop.
It does so in people who are sick, who have symptoms, who have high CD4 counts, in a way that's comparable to the way it works in people who do not have symptoms but are at unknown or unperceived risk of serious things, including death. Hard stop.
We also know that HIV therapies prevent new infections to babies, to sexual partners and so on. These things are categorically different than they were just a few years ago.
We also know from an HIV infection exposure perspective that HIV exposure sexually -- or even in drug use -- is not "high risk." The highest risk is in the neighborhood of less than 1%. It's not a done deal. That's even before we start talking about treatment. We actually know that now, in ways that are very robust and quantitative.
The science around this will continue to become more robust. But I argue strongly that it's sufficiently robust to say that sexual exposure, especially in the context of being on treatment, is essentially zero risk. We know from data that have been presented in the last year or two, including publications this week.
Second, when we look at it from the perspective of harm and the criminal law environment, it means that if someone acquires HIV, then the harm done in the 21st century is not what it used to be.
We used to say, "HIV infection is a death sentence"; it rolls off the tongue so easily.
Exactly; it's a sound bite.
HIV infection is not a death sentence. The harm done by HIV infection is present -- meaning that, yeah, it's better not to [acquire HIV], by all means -- but it is no longer a death sentence. In fact, people living with HIV who have access to testing, care and treatment and are willing to take treatment have, for all intents and purposes, a normal life expectancy and a near-normal, if not normal, quality of life.
Those scientific statements need to be wrapped around the humanistic view of human rights and stigma, and human rights and migration, and human rights and health. That's very different than the way we did before. It's a new junction of science and the humanities that really makes the argument for understanding the impact of undue stigma, discrimination and criminalization on the prosecutorial, judicial environment, which we must address if we are going to deliver on the promise of making death from AIDS a rare event, making new infections from HIV a very rare event and making long-term, healthy, asymptomatic survival with HIV commonplace among those 37 million people today who are living with the virus.
Is IAPAC involved in training and galvanizing providers to become advocates?
IAPAC is involved at a number of levels. First is this larger policy and advocacy microphone -- to make sure that elected officials, policymakers, clinical providers and community members understand the new parameters of the 21st century of HIV. Because without understanding that, then:
- If people don't get tested, that's just the way it is.
- If people present with end-stage AIDS when they're first diagnosed, well, that's just the way it is.
- If people just have treatment failure because we haven't talked to them about adherence, or we practice in a care environment that's stigmatizing, well, that's just the way it is.
- If people just die, that's just the way it is. Right?
No, it's not. None of that is acceptable in the 21st century. Some of that was the way it was, because of our unfortunate ignorance and the unavailability of the tools that we currently have. So, we need to recalibrate that. To a large extent, that's a lot of what I do. I correct this.
We're involved in a range of educational activities to help reset those understandings, including quite a bit of work here in Africa. We're involved in capacity-building exercises to train trainers who will go back to their cities and their countries to "spread the gospel." We're involved in 16 countries right now, where we're training hundreds of providers in the 21st century of HIV -- and for that matter, the 21st century of hepatitis B and hepatitis C [HCV] -- which we're not talking about right now, but I will say that all cases of HCV should be cured. Our inability to mobilize the political and professional and community will to achieve that will cause thousands and thousands of deaths -- much like the 3,000 or 4,000 deaths from HIV today, while we're pleasantly enjoying the company of our colleagues here in Durban.
In a different but related activity, IAPAC is one of four core partners of the Fast-Track Cities Initiative, which is a joint project between IAPAC, UNAIDS, UN-Habitat and the City of Paris to get smaller municipalities -- that is to say, not nations but cities, and city governments, and city communities, and city health care providers -- to agree to achieving the initial goals of 90-90-90 [that by 2020 90% of people with HIV will know their status, 90% of those will be on treatment and 90% of those will achieve viral suppression] -- so that we get 73% of people in these jurisdictions on treatment and virally suppressed by the end of 2020. That's three and a half years from now. Four cities have released initial data here at AIDS 2016.
So, imagine the end of epidemic AIDS in New York: That's actually not so hard to imagine anymore. San Francisco, right? Denver. We're on our way. London, Amsterdam, and so on.
But now imagine the end of AIDS as an epidemic in Nairobi. Imagine Johannesburg. Imagine Durban. Imagine Kinshasa, Accra, Mumbai, Bangkok. Well, those cities have committed, and they're on their way, too. Imagine a Nairobi without AIDS. Now, don't imagine it; demand it.
In this process we engage not just government, not just public health; we're engaging key local medical leaders in those cities, and key community and civil society leaders in those communities, to recalibrate the understanding and the expectations and to create the demand and giving them the tools by which they can do that.
Many of the tools we already have. That is to say, we have effective antiretroviral therapies. We have very effective rapid HIV testing. But today there are many places that don't have rapid testing because the legal environment doesn't allow people to use rapid tests (rapid tests can only be administered by physicians) where there are no physicians, and so on.
We have to understand all the structural, behavioral and social barriers to delivering the things that we have. We don't need new medicines to do this. The medicines are not perfect, but they're pretty darn good, right? We need to demand that those things that we have actually get used because we can save thousands of lives today with the tools we have. Those failures to fully exploit those tools today aren't just bad for people or for patients; those are human rights violations.
That's the call to action for care providers to be activists. I'm proud to call myself a physician-activist -- maybe an activist-physician, in that order -- and an inheritor of the legacy of our departed colleagues Jonathan Mann and Joep Lange and all of the community activists who have come before me and taught me and provided the tools we have today.
In our current context, in which laws criminalizing people living with and affected by HIV still exist, what is a provider's responsibility to protect their clients regarding potential risk of criminalization? We say, "Get tested, get tested" -- but there is the chance that, once a person knows their HIV-positive status, they are vulnerable to being criminalized under these stigmatizing laws.
It's conflicted, right? If I know that I test somebody, and I actually put their lives or their wherewithal at risk, that's a problem. We as providers need to be mindful of that and of the extent that an HIV diagnosis may render that happening.
First and foremost, that means we need to be very protective of the confidentiality of the information that we are privileged to have access to -- in this case an HIV status. Being very mindful shepherds of protected, private, confidential information is very important.
Then, sometimes we have to be very careful about navigating these tricky shoals and working within patient communities to create a safe place -- to ask about safety, first and foremost. Inquire about and understand the environment. It's not as simple as saying, "What is it like in my city?" It's actually asking an individual. Because it's where they live. It's the house that they live in, metaphorically. It's the family and friends that they live among that comprise safety or non-safety.
There's also a larger judiciary, legal or criminal environment in which they live. We need to be mindful of that, as well. Sometimes that means putting clinic doors in different places, or not making "HIV" part of the name on the door, and so on. There are different solutions in different places. It depends a little bit on that.
It also means that, when possible -- as we have recently, very successfully and proudly, in the state of Colorado, where I live and practice medicine -- we work carefully and diplomatically with lawmakers to address inconsistencies in the law, where the laws are in the 20th century or -- even worse -- the 19th century, to try to modernize those laws. It was marvelous to see the efforts of Senator Pat Steadman and the Colorado Mod Squad to modernize the Colorado statutes.
We recognize where we are not perfect and try to move the dialogue forward. Rather than saying that this is just the way it is -- that death is just the way it is, that criminalization and stigma are just the way it is -- we acknowledge that we have this shortcoming. Let's see what we can do today and tomorrow to fix it.
Any final thoughts before we sign off?
Here at AIDS 2016, the Fast-Track Cities Initiative launched its first informational effort to help identify and neutralize some of these issues around the care continuum, around resources, around stigma, discrimination and criminalization. The first five of many city-specific data dashboards are now available. Those cities are Amsterdam, Netherlands; Denver, United States of America; Kyiv, Ukraine; Paris, France; and San Francisco, USA. By World AIDS Day, just a few months from now, we should have, I believe, around 25 cities.
We hope that public health officials, health providers and, most importantly, communities of people living with or affected by HIV will help report into that database about where our data are accurate and, perhaps more importantly, where they're not -- so that we can identify stigma, discrimination and criminalization; where there are medication stock-outs; where there are policies and laws that make it difficult for providers to do the job they want to do, that make it difficult for people who are living with HIV to get tested or into care; and so on.
Ending AIDS as an epidemic is going to require everybody believing that it can happen, and everybody doing a small, and sometimes a larger, part in making sure that our communities ultimately benefit from all of the tools that we have today.
This transcript has been edited for clarity.