Q&A: Chip Lyons, CEO of Elizabeth Glaser Pediatric AIDS Foundation

PARIS — In 2015, more than 1.2 million babies were born to women living with HIV in 21 of the countries with the highest burden of the disease. Less than half of those infants were tested for HIV within the first two months of life, which would enable them to immediately start life-saving treatment, as UNAIDS recommends. Today, fewer than 50 percent of the babies who need antiretroviral therapy are started on treatment.

Public health experts believe one of the major obstacles has been the often long time between HIV testing and results. The Elizabeth Glaser Pediatric AIDS Foundation, with a four-year, $63 million grant from Unitaid, is piloting a project to shorten that waiting period.

Currently in seven countries, the project provides health facilities with the latest technology for detecting the disease and carries out intensive training with health workers, encouraging them to test infants as early as possible — usually when they come for their six-week immunizations — and then deliver results rapidly. The initiative has set up systems for health outposts that do not have equipment to rapidly transfer tests to capable facilities, and then receive results quickly — often in under two days.

The project officially launched at the end of 2016. During last week's International AIDS Society Conference on HIV Science, EGPAF revealed initial data from 95 sites in six countries where more than 2,600 infants were tested between December 2016 and July 2017. More than 99 percent of caregivers received test results in a median time that was under 24 hours. Of the 145 infants who tested positive for HIV, nearly 87 percent were started on ART. EGPAF continues to update the statistics on a digital dashboard.

Charles “Chip” Lyons, EGPAF's president and chief executive officer, spoke to Devex about what these early results mean and what comes next for the project. Our conversation has been edited for length and clarity.

Why did you pursue this project?

On the one hand, [prevention of mother-to-child transmission] is a success story in the response to the epidemic, but it's a relative success. First of all, we're still having to drive down vertical transmission [of the virus from mother to child]. There are a number of countries that made remarkable progress, but it's still higher than it needs to be, given the tools at hand.

Then, broadly speaking, of the 1.2 million who are born to HIV positive mothers — and this is generalized — about 50 percent get tested. And 50 percent [of those] get their test results. That can range between 30 and 90 days. The kind of base we've used in this work is 53 days. But half of those are initiated on treatment. If you're not going to get the test results by 90 days, a lot of caregivers give up. They've been back several times and are still not getting results.

Why is this particularly problematic for infants?

There's enough evidence to be hopeful that the earlier you initiate, the more you reduce mortality and morbidity. And obviously, even traditionally, health care workers have been a little bit reticent about diagnosing and initiating with children. It's a little more complicated. You've got to create the conditions for the site, the health care worker, the caregiver, so that you optimize testing and then you optimize the initiation process. Then that leads to better outcomes in terms of retention, care, adherence and so on. Getting more kids on treatment and testing is the critical factor.

The project is still in its earlier stages, but is it delivering the kinds of results you were anticipating?

For years and years, we've all been bemoaning this issue of the testing and the time lag, no matter how many sites I've been to. It's the horror stories of 75 days. It's dramatic. It's really cool to [start] from that 53 median day, and as a result of this data, it's down to 0. What do I mean by 0? It's down to 24 hours [between administering the test and delivering the result].

What's also cool is that when you're characterizing the potential — projecting what is possible to do when you're writing up the proposal and speaking to people, ministries and Unitaid — you project out the plausible, hopeful scenario. When you start to get the data in and it's confirming the upside thinking of what was possible, it's wow. It's working. That doesn't happen all the time. It's really exciting.

Why do you think earlier and faster diagnosis appears to be translating into quicker initiation on treatment?

People are not always sure that the caregiver would be of a mind to initiate at the same time that they're getting the test results. What this has shown so far, quite dramatically in fact, is that they are of a mind. With good counseling and good support, they understand what is best for your baby is right now to initiate treatment. The data that's coming out from these seven countries is bearing that out.

In setting up the project and training health care workers, are you seeing any additional benefits?

You're building confidence. You're giving tools to health care workers. You're contributing to a sense of accomplishment and success, after years of exhortations that we have to do a better job. You can't just do this or expect different results from that system without investing in the system. That does mean these tools. And that does mean health workers’ own confidence and technical skill, to be able to follow them through proper guidelines and to have proper standards.

It's tying right in to immunization schedules. Some of us who have worked in this area for a long time remember when the goal was to get 80 percent immunization coverage rates for 1-year-old children. I was shocked at several sites — remote Kenya — and their 96 percent immunization coverage rates. You have to ask yourself, if through their system, they're giving mid- and high-90s on [the expanded program on immunization, which tries to extend all relevant vaccines to everyone at risk], why can't we?

Part of the reason is that we haven't provided [health care workers] with the tools and the support to accomplish that. You bring that in, and now we're seeing results to caregiver at the high-90s rate, and commensurate in identification rate. It's always just struck me, even in the most modest settings, why are they immunizing at that rate and we're struggling so much in terms of testing. I think we're seeing part of the answer to that question.

What happens next?

We're in seven of the nine countries [under the Unitaid grant]. There are challenges to actually getting the platforms in country. Some of it is bureaucratic. Some of it is regulatory. Some of them want parallel field testing. Stuff gets in the way. We hope the next two are going to come online.

At Unitaid, they want to be market making. Their theory of change is, it's not enough to build, and they will come. Build it, prove it and reduce the cost, [so that] it gets into a range that's doable within a financial envelope for a combination of donors, health ministries and finance ministries. So next steps also include trying to bring the prices [of the testing equipment] down. There are some independent studies that suggest there is some margin in there between purchaser cost and cost to produce. We're hoping the data proves the point.

This IAS conference is really important in terms of dissemination. It's really getting the data out.

It links to other things that are going on out there in the policy sphere as well. It can contribute and is contributing to the ability to meet some of those targets. And that just creates its own momentum. When we start to get success in one area, it's morale-boosting.

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