HIV Activist David Barr on Going Beyond 90-90-90

David Barr at the 90-90-90 Targets Workshop, an AIDS 2018 preconference meeting, in Amsterdam, the Netherlands.
Terri Wilder

David Barr, a longtime AIDS activist who was an ACT UP New York member and co-founder of Treatment Action Group (TAG), is now with the Fremont Center. He was also the coordinator for the Joep Lange Institute's AIDS 2018 preconference workshop, Meeting the 90-90-90 Targets: Faster and Better.

Terri Wilder, M.S.W.: Just to give our readers context, the 90-90-90 targets were set by the Joint United Nations Program on HIV and AIDS in 2014, calling for 90% of people living with HIV to know their HIV status, 90% of people living with HIV to start on antiretroviral treatment, and 90% of people with HIV to achieve viral suppression.

You guys had this preconference. And, last year, UNAIDS actually announced that half the people with HIV were able to access antiretrovirals (ARV); however, there are still millions, obviously, that still need to know their status, need to start on ARV. The majority of the people who haven't had access are typically from more stigmatized or vulnerable populations.

Can you just tell me what was the purpose of the preconference this year? What was the vision? What were folks hoping to get out of it?

David Barr: Sure. This project was hosted and sponsored by the Joep Lange Institute, which is an institute based here in Amsterdam and named after Joep Lange, M.D., Ph.D., who was a very well-known and early AIDS researcher who died in the Air Malaysia plane explosion on his way to the AIDS conference in Melbourne four years ago.

The project took about 18 months. We held seven meetings over the course of a year, where we brought together agencies like UNAIDS, WHO, the Global Fund, PEPFAR; people living with HIV; activists; researchers from academic institutions around the world; health care providers; health ministries, to look at what are the challenges that we've seen since the 90-90-90 targets and the UNAIDS Fast Track Cities Initiative were introduced in 2014. What have we learned since that time, and what are the challenges that we're facing, not only to meet those targets, but beyond those targets?

We looked at a couple of overarching factors. One, that when the Fast Track Initiative and the 90-90-90 targets were released, UNAIDS put out estimates of the funding levels that would be needed to meet the need. We've never reached those funding levels. We've been below those levels from the very beginning of this initiative. And the levels were supposed to increase every year; instead, they've decreased over that time.

So, one of the major concerns that we've had is: How are countries making decisions about how they're going to spend their AIDS money if they don't have enough money to do everything that's in the Fast Track package, that's in the World Health Organization guideline package? How are they scaling up treatment, scaling up prevention, scaling up support services, protecting human rights, when they don't have enough money to actually do all those things?

It raised concerns for us that if you don't have enough money to do everything, and do it well, doing 90-90-90 badly could make things worse. You could cause harm to people living with HIV if you throw drugs at them very early in the course of their disease -- they're perfectly healthy -- but you can't guarantee the consistency of their drug supply. So, if I'm a 20-year-old living in Tanzania and you tell me that I have HIV, and you expect me to start taking medicine pretty much on the day that you give me my test results, and then I come back next month for the pills and you tell me that there are no pills for me, how have you helped me? Really, what you're doing is creating drug resistance by giving people intermittent doses of medicine.

So, we're very concerned about ensuring the quality of treatment in the face of constrained funding. And what have we learned? We're seeing higher rates growing, rates of drug resistance, alarming numbers, reported drug stockouts and drug shortages, and diagnostic shortages all over the world, decreased funding for support services -- adherence support, psychosocial support services, housing, mental health, food, etc.

So, we're really worried about the eroding quality of treatment delivery, as we keep trying to do more with less. We're also really concerned that the prevention targets that have also been set to reduce new infections by at least 50% by 2020 were way off target. On that, we're not going to meet those targets. Even UNAIDS has now said we won't meet the target. We've never funded prevention to the extent that it needs to be funded. UNAIDS has recommended that 25% of the total AIDS money should go to prevention. And we've never reached that 25% target.

So, we see new infection rates rising in some parts of the world. Certainly, in Eastern Europe and Central Asia, the Middle East and North Africa, and in pockets of different -- you know, within countries and within particular populations -- infection rates are going up. We've seen some really nice decreases in HIV incidence in some places, but not in most.

TW: Can you talk about the places that the incidence has ...?

DB: Swaziland seems to have done a nice job. Rwanda. I'm not sure about Botswana. There's been some decreases in incidence, but whether you're looking at the treatment targets, the 90-90-90 targets, or the prevention targets, even in the countries that are meeting their 90-90-90 targets -- Botswana, Rwanda; there are a few others that will meet the targets in the time -- it isn't just meeting those targets that is going to control the epidemic. It really depends on who's missing.

So, who's in the 10-10-10 if you reach your 90-90-90? And what we're seeing across the board is who's not coming into care, who's not benefitting from prevention services -- from treatment services -- are key populations: men who have sex with men, sex workers, people who use drugs, migrants, prisoners, and young people -- adolescents and young adults. So, people who not only are at greater risk for acquiring HIV, but also at greater risk for transmitting to others. They're more sexually active; they have less access to services to protect themselves and protect other people.

Even where you meet your 90-90-90 targets, if your 10-10-10 people who are missing are people who are more likely to get infected and infect others, then you haven't controlled your epidemic. So, that's a major area of concern.

The 90-90-90 targets are nice, ambitious goals. But as a person living with HIV, I'm a little insulted to hear that, "Well, if we reach these targets we've ended AIDS." Even if we reach the targets, right? Best-case scenario, we reach these targets, we still have to treat 35 to 40 million people for the rest of their lives, which is hopefully for decades to come. That's an expensive proposition. That's a lot of AIDS infrastructure that we need for decades. We still have to maintain prevention services for decades to come. So, even if we meet these targets, we've haven't ended anything.

Part of the work that we did was: Let's think beyond 2020. Let's think beyond 2030. What's a sustainable approach to doing this?

TW: It's interesting because as the second day of the 90-90-90 Targets Workshop hosted by IAPAC was happening, literally in the next building was the undetectable equals untransmittable (U=U) preconference. And so I'm wondering, if we made our goals, we have to have the infrastructure and funding to be able to maintain people in health care and make sure they have continued access to the medications they need. Where do you think U=U fits into this 90-90-90 conversation?

DB: Well, I think U=U is a slogan. It's a slogan about something that's larger than U=U. I guess I don't see U=U as a standalone piece of work. Treatment prevents infection. It prevents infection really well. If I take my pills and I'm undetectable, I can't transmit to others. If I'm uninfected and I take [pre-exposure prophylaxis] (PrEP), I can't get infected. So, ARVs have a really important role to play in prevention, whether you're positive or negative.

U=U has been a really great campaign, I think, for two functions: one, to promote education about the prevention benefit of treatment, and two, to help reduce stigma, both the stigma of people who are living with HIV who don't want to feel that they're infectious all the time -- we don't want to infect other people. So, I think it's been very useful to sort of empower people who are living with HIV and also to provide information to people who are negative that we're not a danger to them. So, it's a risk reduction.

I really want to think about how that campaign fits into broader work to secure treatment access, prevention funding, etc.

TW: Yeah. I wanted to ask you: I think a lot of people think about these ending-epidemic campaigns that are not only global, but in the United States. New York State Department of Health and the AIDS Institute have their ending the epidemic by 2020. A lot of people get very focused on the-funding-is-the-driver -- which, you know, yes; money has to make things happen.

But when we look at something like 90-90-90 across the globe, the politics and the culture have the spaces that people live in. Sometimes money is not going to get rid of that.

DB: Well, as you said, the money is really important. But what's most important is the political will to provide the money and then to use the money correctly, right? To use the money on evidence-based approaches for prevention and treatment, to protect human rights, not criminalize people living with HIV or people who have things in their life that might make them at risk for HIV. So that's, I think, the most important piece: the political will to act.

TW: UNAIDS put together and announced where we are at this halfway point. But I'm just wondering, to your knowledge, is the Joint United Nations Program on HIV, which put this call out in 2014, really working with governments to dismantle things like, if you're gay in a country, it's a crime? Those kinds of things that you have to drill down deeper on, versus just writing a check to?

DB: Well, UNAIDS works with countries all the time around stigma reduction, discrimination, human rights protection. And they've done a good job, in many cases, of weighing in with countries around those issues and trying to get them to do the right thing. UNAIDS has no power or leverage to get a country to change its laws. And, actually, UNAIDS reports to those countries, not the other way around, right? The countries are member states of the United Nations, and UNAIDS is an office of the United Nations.

But if you look at the global infrastructure, UNAIDS put out the 90-90-90 targets and Fast Track Initiative in 2014. It was done in conjunction with a high-level meeting on AIDS at the United Nations where the member states all signed onto this program. At the same time that they signed onto this very dramatic, ambitious program to end AIDS in 10 years, less than 10 years, also donor governments withdrew their funding. The Global Fund decided that they were going to start pulling out of middle-income countries.

Now, "middle-income countries" is a World Bank classification that determines that a country is middle income. The majority of people living with AIDS in the world now live in middle income countries, as do the majority of poor people in the world. So, when the Global Fund pulls out of funding in these countries, it loses -- the global public health community loses -- all of its leverage within those countries to get them to fund the right things. Because with their Global Fund grants, it's money coming in. And the Global Fund can say, "Well, your epidemic is made up of 70%, 90% key populations. You've got to spend this money on those people."

And as soon as the Global Fund pulls out and expects the government to start footing the bill itself, the first thing that goes is funding to key populations. So, I think that the global institutions have been really irresponsible in the way that they've withdrawn funding and didn't create a foundation for transition to domestic funding of the epidemics that would ensure that the money is used correctly and affects people.

TW: What is the role of the larger activist community to make sure that we make our goals but that it's sustainable? What should people be demanding?

DB: Well, I think we need to look beyond these 90-90-90 targets. I think that we need to question all the time these kinds of strategies. And it's a fine, nice strategy. It sounds great. Nobody was willing to fully fund it from the very beginning. Governments were not really willing to change laws and practices that would make it possible to meet these targets. So I think our goal as activists always has to be: Are people getting the things they need? And what are the obstacles to getting those things? And then, how do we break them down?

On the global level, it's about money; it's about guidance. But the real work has to take place at the national and local levels, because each country is a story unto itself. You make change differently, depending on the context of the country.

This transcript has been lightly edited for clarity.