AGENDA 1.3 REPORT OF THE EXECUTIVE DIRECTOR
By the Elizabeth Glaser Pediatric AIDS Foundation
Since the PCB last met, UNAIDS has reported that we are making less progress on pediatric HIV treatment than previously believed. In 2016, only 43% of HIV-exposed infants were tested early for HIV, and a mere 43% of children living with HIV were on treatment. And UNAIDS and UNICEF recently reported that in West and Central Africa, only around 2 out of every 10 children living with HIV are on treatment. The UNAIDS report concluded that “the world risks not reaching the target of providing ART to 1.6 million children by 2018.” We would say that’s an understatement. And it bears repeating that it is especially urgent to identify children very early and immediately begin treatment because their young immune systems simply can’t protect them while they wait.
With this in mind, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) would like to draw the PCB’s attention to four recent events treating the pediatric treatment gap.
First, as Caritas just mentioned, there was a meeting on 17 November among key actors in drug research, development, approval, and uptake met at the Vatican on accelerating the availability of optimal paediatric ARV formulations, which take up to 10 years to develop after new adult drugs are ready, but which could, once available, greatly improve children’s chances for successful treatment. This wasn’t the first time stakeholders had gathered to discuss the multitude of financial, technical, and bureaucratic challenges in pediatric formulation development. But this time, they came together as a new “coalition of the willing” on pediatric ARVs and agreed to an Action Plan with over 40 concrete commitments. Many participants also made individual commitments, such as timelines for finishing certain drugs in the pipeline.
Second, the AIDS Free working group co-chairs WHO and EGPAF organized an ICASA pre-meeting to share best practices, identify bottlenecks and commit to a clear way forward on diagnosis and treatment for children and adolescents living with HIV. The mantra of the meeting was that we need a paradigm shift, and that we cannot reach our targets by doing what we have done in the past. Recommended ways forward included Point of Care Early Infant Diagnosis (EID), HIV self-testing for adolescents, making Dolutegravir quickly available for children, and differentiated service delivery models for children and adolescents.
Third, at ICASA the conveners of Start Free, Stay Free, AIDS Free organized a satellite intended to draw attention to the framework and to present findings from the first progress and accountability report.
Finally, also at ICASA, EGPAF, CHAI, and UNICEF presented an update on their Point of Care EID projects, which are showing remarkable results after just a year of implementation. Most notably, median turn-around time for test results for infants has gone from 1 to 4 months with conventional testing to zero days for POC tests. Zero days for test results means 100% of caregivers getting results and over 90% of HIV-positive children being initiated on treatment.
In closing, Mr. Chair, we echo those calling for change this morning. For children too, business as usual will not suffice.
By the Global Network of People Living with HIV (GNP Plus)
GNP+ welcomes the NGO report and wishes to highlight its urgency and importance. To meet global commitments on ending AIDS, we need to focus on the gaps throughout the prevention and treatment continuum. To identify these gaps, we need strong, well-developed data.
In the EECA region, for example, we have several community-based surveys that show key populations missing from the continuum. We started to ask questions: how many LGBT community members start ARVs after an HIV positive test? how many are lost at this stage? how many drug users stay in treatment after 24 months? and more. We asked Ministries of Health in 15 countries; we received answers only from four (Kazachstan, Georgia and Baltic Countries) – these countries didn’t have all the data to answer – but these countries were at least trying to gather data according to age, gender and key population status. If we really want to fix the gaps, we need to collect the right data.
The concern is: how can we collect data about discriminated and criminalized communities? The answer: we, the communities, can. For example, the Minister of Health of Russia doesn’t know the answer to the question: How long did HIV-positive people in the Siberian city, Tomsk, with CD4 counts lower than 50 wait for ARV due to stock outs. From community-led research, we have this answer – 6 months. Since 2009, communities have rigorously conducted research to measure treatment access in Russia.
Similarly, the Ministry of Health didn’t measure access to medical care for triply vulnerable groups, such as pregnant women who use drugs and have kids in Russia – but a community-based women’s organization did. Communities are caring for those 10% left behind. We ourselves are the ones who have measured and found out that this population have almost no opportunities to be adherent to ARVs. We have access to these groups, and we have experience.
In addition, communities know the prices for ARVs and we know the corruption rates. Multiple community organizations work together to collect information about ARV procurement tenders in Russia, and ARV prices and government-funded services around all EECA region. We are skilled already enough to see both the levels of access and money spent to reach the results.
These are but a few examples from only one region… we have much more.
Why are we not working together? Communities have access, technical ability, and motivation, yet we lack resources for this work. We need proper resourcing for community-led monitoring and data gathering efforts, including efforts already in place – including the PLHIV Stigma Index led by GNP+ and ICW and the Global Men’s Health and Rights Survey led by the Global Forum on MSM & HIV. It is clear that communities are best positioned to reach and survey their own.
If we want jointly – governments, UNAIDS and communities – to reach our ambitious aims – we need to measure and investigate the gaps and get information about communities that are left behind. And after data gathering, we need to work out special strategies that will fill these gaps and reach these communities, most in need of care – and we need to do it TOGETHER.