Maximize the Moment
Prepared remarks from EGPAF CEO and President Chip Lyons scheduled for delivery on February 1, 2023 at the Global Alliance to End AIDS in Children launch event in Dar Es Salam.
Excellencies, Ministers, Ambassadors, Colleagues and Friends. I am honored to be speaking to you today. Your Excellency Philip Mpango, Vice President of Tanzania, Honorable Dr. Samia Suluhu Hassan, thank you for your commitment to ending AIDS in children. Thank you for prioritizing this meeting—the importance of your participation and commitment to children affected by HIV cannot be overstated.
We are pleased to be here with you today to strengthen political, policy and fiscal leadership for children. For over 30 years the Elizabeth Glaser Pediatric AIDS Foundation – known to many of you as “EGPAF” – has been dedicated to improving the lives of women, children and families affected by HIV and AIDS, and has been working in Africa for nearly 25 of those years hand in hand with many of you in this room.
We know that you are as concerned as we are about the growing equity gap in reaching children with and at risk of HIV. It is beyond frustrating that 40 years into the epidemic children still do not get the political and financial attention they deserve. The fact that children are 4 percent of new infections but 15 percent of HIV-related deaths should be disturbing enough to accelerate actions to reach this grossly underserved population.
But what is it going to take to get us there? I wish I could offer easy answers. Ninety percent of all children living with HIV globally are located in Africa. We know that country and community context will shape our efforts, incorporating the unique needs of the populations served. And collectively we need to make the changes that are universally understood as steps necessary to putting us on the right path.
To reach these children we will need the best political and public health minds and leaders that Africa has to offer, like you here in this room today – along with the insights and assistance of communities living with and affected by HIV across the region —if we hope to close the equity gap.
I choose to believe this meeting means we are emerging from a sense of complacency about the AIDS pandemic, particularly as it relates to its children and youth. By being here today, we are showing other leaders, decision and policy makers, our peers, and donors that we haven’t given up. We are ready to find and implement the solutions necessary to end AIDS in children and young people.
Whether you view the existing global HIV response through an inequity, public health or sustainability lens, the bleak data in the report that the Executive Director of UNAIDS released last July at IAS nearly shouted that children have been left behind. Their report describes a pattern of inequality, failed public health choices, and an incomplete response to the AIDS epidemic.
The unavoidable fact is that the scale-up of proven maternal and pediatric interventions must be prioritized. Decades of service delivery have given us a roadmap for areas that, with the right investments and increased attention, will accelerate progress – many of which are prioritized in the national action plans endorsed today.
Antiretroviral therapy coverage among pregnant women has been almost stagnant for the last five years and even declined slightly in 2020. Almost half of these mothers not on treatment are in western and central Africa. Meanwhile, mother to child transmission in eastern southern Africa is more frequently due to a mother newly acquiring HIV during pregnancy and breastfeeding.
This far into the HIV response, there is no excuse for a pregnant woman – whether HIV positive or negative – not having access to treatment or PrEP to protect their health and the health of their infant.
Similarly, adoption and scale-up of well-documented game changers like point of care early infant diagnosis is stalled. Access to point-of-care early infant diagnosis ensures that test results are rapidly returned—usually within one day— enabling a shorter turnaround time to initiate life-saving treatment for infants.
HIV testing of children is a prime example of where country context must drive the approaches needed to address programmatic challenges. In West and Central Africa HIV testing coverage for children is universally low, while other regions face challenges around finding older children or linking children to treatment and care. It’s clear that different circumstances require different strategies in order to increase and improve testing scale up and linkage to treatment.
Viral suppression rates in children are unconscionably low, with only 41 percent of children globally being virally suppressed. Universal access to age-appropriate medicines should be the norm, not something still out of reach for almost half of children living with HIV. And, of course, children don’t thrive from ARVs alone. Support and care programs for children are desperately needed to wrap around clinical interventions and make sure children are not just enrolled in treatment, but are given adherence support, have access to mental health and social services, are safe from violence, free from malnutrition, the list goes on.
We still lack understanding on how to best identify and meet the needs of school aged children. The treatment journey for children living with HIV is a long one. Almost two-thirds of children not on treatment are aged five or older. We have evidence on under-5 HIV interventions connected to ending mother-to-child transmission and a growing body of work with adolescents and youth – but that age group in between is both not well understood and badly underserved. Increased index testing can help us find older children that may have been missed by other health settings. But there are still unique issues around stigma and adherence from young childhood to adolescence – such as when to inform a child of their HIV status and HIV in school settings that need more attention.
At this stage in the epidemic, poor pediatric outcomes are not due to a lack of technical know-how, but rather a lack of political action, financial investments and visible leadership.
Challenges persist in understanding where along the continuum of care the HIV response fails children, due in large part to lack of data on children. Breaking down data and evidence by age and geography is the only way to tackle big challenges like delayed testing and treatment initiation for childhood HIV/TB, and use of suboptimal ARV regimens and low rates of viral suppression in children and young people. Understanding national level maternal and pediatric data will be critical to effectively address the inequalities children face in the AIDS response within the health system and beyond.
Let us be clear about the perverse logic problem at play here: we all want to make data-informed decisions; yet we continue to do surveys that do not include children aged 0-14. Such a data vacuum would not be tolerated for any other age group. To make better decisions about the youngest patients, we need to collect and analyze the right data, and do it in a cost-effective and sustainable way.
Program information is only part of the equation. While many donors express their commitment to meeting the needs of HIV-infected and vulnerable children, adolescents and caregivers in policies and strategies, it is hard to assess to what extent this intent translates into dedicated resources and targeted programs. We have to better understand how existing donor funding and domestic resources are being allocated for children, what interventions are being prioritized and what funding is still needed to meet the goals set by governments. Thankfully the Coalition for Children Affected by AIDS has pressed for answers to these questions and released a good, first report, a flashlight in the dark to help us take next steps.
No one opposes HIV services for children, and yet too many times services for children are set aside when budgets are tight or other challenges stand in the way. Your presence here today is a public commitment to speak up for children so that they are both prioritized and included at the center of the HIV response moving forward.
Ending pediatric AIDS is at the heart of EGPAF’s mission. I believe that this can be a milestone moment in the global AIDS response, where knowhow, newer and better tools, and committed partners can come together to end inequities for children. EGPAF is committed to working with you all regionally and in country. We are committed to working closely with U.S. and global policy makers to get the job done.
It is all of our jobs here today to ensure this moment is the turn of the corner the children of Africa deserve. If children were able to speak for themselves at the decision-making tables, they would demand it out of basic fairness and justice. Be their advocate, be their leaders, take action. Thank you for your attention.
