Editor's Note: (Charles Lyons is the president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation. From 2015-2016, Lyons served as US representative to the executive board of UNICEF. The opinions expressed in this commentary are his own; read more opinion at CNN.)
(CNN) This month, a new strain of HIV was discovered for the first time in nearly two decades, providing the global community with a more complete map of how the virus evolves.
That this finding was made during the blood screening process resonates deeply with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), as our founder contracted the virus through a blood transfusion after giving birth — later unknowingly passing the disease to her daughter, Ariel, and son, Jake. HIV would ultimately claim the lives of Ariel and Elizabeth — but not before Elizabeth turned personal tragedy into a movement, pushing for research that would virtually end mother-to-child transmission of HIV in the US.
While many Americans may believe the HIV epidemic is in the past, organizations like EGPAF working in the global fight confront on a daily basis the sobering reality that the finish line still eludes us. In fact, we stand at a critical moment where changes in the HIV epidemic, population needs, and the virus itself, as well as persistent gaps in reaching target populations, challenge us to rapidly adapt our approach and adopt new tools. Advances have limited the spread of HIV, but those who are unidentified and untreated have become harder and harder to reach. While mother-to-child transmission rates in hardest-hit countries across sub-Saharan African have dropped steadily over the last 10 to 15 years, recent reports indicate that these rates are creeping back up in a handful of countries — jeopardizing progress in countries that once held the promise of eliminating pediatric AIDS to usher in the first AIDS-free generation.
Both the discovery of the new strain of HIV as well as the evidence of increases in mother-to-child transmission rates stand as stark reminders that all of us — scientists, advocates, healthcare providers, and community members — must be as aggressive and nimble as the virus itself. HIV demands vigilance and a priority on researching and scaling up new innovations that can drive real improvements in the quality of life for those living with HIV.
In recent years, for instance, it had become clear that the system for diagnosing HIV in infants — where a caregiver waited weeks or months for the infant's test result from a central lab — was delaying the delivery of medication to children who needed it. Too many infants never received test results, or the results arrived too late for medication to make a clinical difference, since peak mortality occurs between six weeks and four months for babies infected with HIV.
We needed a disruptive approach to address this challenge, and we found one. With funding from Unitaid, EGPAF began to more quickly diagnose and initiate HIV-infected infants by introducing point-of-care early infant diagnosis technology into health-care facilities in nine countries. Combining early HIV testing, prompt results, and swift treatment initiation means the difference between life and death for HIV-infected infants. After the roll-out of these machines, the median time to return a test to a caregiver immediately went from 55 days to same-day results. Thanks to faster results, treatment began sooner for infants who needed it: Among infants who tested HIV-positive, over 90% began treatment within 60 days, as opposed to only 43% under the old testing system — a truly transformational shift that proved new approaches can work.
And yet, for children living with HIV, results can be slow to arrive after a new innovation in treatment, as new medicines still take much longer to become available to children after they're made available to adults. While there is a rich pipeline in HIV drugs — in great part because there is a high-income market for HIV products — the same is not always true for HIV drugs that meet children's unique medical needs. We still see significant gaps in research, slow development of pediatric-friendly formulations and delayed adoption of pediatric treatment guidelines.
Years after better drugs for adults have come to market, the options for children are disappointingly few. The drivers of innovation simply have not been working for children living with HIV. In the face of this limited progress, the global community is taking action to rapidly scale up the next generation of HIV medicines for children.
After the Vatican led a series of consultations in Rome with international groups like the World Health Organization, regulatory bodies like the US Food and Drug Administration are supporting new kinds of drug trials to encourage the approval of HIV drugs formulated for children, and some pharmaceutical companies are partnering to rapidly develop and market affordable drug formulations appropriate for children—all while maintaining quality of care. Of particular note is the ongoing rollout of a child-friendly version of dolutegravir to the youngest age ranges. With demonstrated efficacy, safety, and tolerability, the drug could be a game-changer for children living with HIV.
For our part, EGPAF will be ramping up work alongside national health ministries to ensure availability of these drugs in country, with health workers to ensure proper training to administer these drugs in children, and with communities and clients to increase demand and attention around new child-friendly drugs.
These are just two examples of improvements necessary to get us closer to the finish line, especially with vulnerable populations like children. While it may seem obvious, it should be clearly stated that advancements must reach the people who need them most.
Innovation without access is meaningless. New tools cannot simply be dropped into the existing health system and be expected to work well. Rather, we need to assess the current system — including infrastructure and resources as well as patient perspectives on service delivery. Introducing a new drug, technology, or program model isn't a one-time event; it is an iterative process, taking place in a fast-paced environment of learning and an ever-accelerating state of change.
To date, a cure for HIV remains elusive. In the absence of a cure, it is imperative to scale up cutting-edge tools and promising innovations that improve the lives of vulnerable populations. The discovery of this new strain of HIV is yet another reminder of the importance of innovation in fighting an agile disease like HIV/AIDS. Funding and support for research and development of innovative drugs and diagnostics must continue unfettered if we are to stay ahead of the epidemic — and someday, end it for good.