Can pediatric AIDS end with numbers still uncounted?
What has to happen to propel the progress of two and a half decades of confronting HIV in children to the success of no child contracting the virus, getting sick with AIDS, and no child dying from the disease? That was the question posed to a panel of guests Tuesday in Washington, DC as the Elizabeth Glaser Pediatric AIDS Foundation brought scientists and program leaders together to discuss “What’s next in ending pediatric AIDS.”
In the 25 years since Elizabeth Glaser, a mother, former teacher, and wife of a television actor set her sight on that goal, in grief over the loss of one child, in hope of saving the one she had left, the virus in children became preventable and treatable, two things it was not when her quest began. And yet now more than 700 children are estimated to be getting infected with HIV daily, half of them will die as result of the virus before they turn two years old, and of the upwards of 3.2 million children living with HIV now, only a third of those who need treatment are getting it. And although much of the momentum to respond to HIV globally began in the name of children once the prevention of parent to child transmission was determined to be possible, today they lag far behind adults in access to diagnosis, care and treatment.
While panelists, who included U.S. Global AIDS Coordinator Ambassador Deborah Birx, Elizabeth Glaser Pediatric AIDS Foundation President Chip Lyons, Clinton Health Access Initiative medical advisor Dr. Shaffiq Essajee, and Children’s Investment Fund Foundation director Peter McDermott, pointed to a number of needed steps, among them better tracking of mothers and children and more focused epidemiology, they agreed emphatically that children need new products, just for them.
“It’s time to go back to the drawing board,” Essajee said. “the landscape has changed.”
While current medicines, made for adults, hard for children to take and tolerate, present their own obstacle course to adherence, panelists agreed, failures in tests used for adults to identify the presence of the virus in children presents an obstacle to even attempting treatment.
“The biggest bottleneck is the absence of point of care diagnostic tests,” McDermott said.
USAID Director Raj Shah, who arrived late, underscored this point when his turn came, albeit perhaps, inadvertently, when he asserted that “the big killers” of children include diarrhea and pneumonia, adding that only “in some cases Pediatric AIDS rises to the top five.”
If a child with HIV that has been undiagnosed, unreported, unrecognized also has diarrhea, pneumonia, malaria and malnutrition, Lyons asked in return, of what did the child die? Even when suspected, AIDS as an underlying cause is an answer unlikely to be confirmed, he added.
Shah nodded and suggested an overall effort to track HIV services, document the need for and link services for children and their mothers would lower child mortality, and get the enthusiastic support of governments. It was a suggestion that also got the enthusiastic support of Birx, who pledged her office would begin its part in planning for the strategy that day.
Discussion at the event Tuesday, though, continued to revolve around research with Dr. Gwynne Stevens of Cepheid, the health technology company that produced the GeneXpert test that rapidly diagnoses tuberculosis, as well as resistance to the most common drugs used to treat that disease.
Even when children are tested, she noted, they can be lost to care in the weeks before results of the test are returned in a resource poor country. “Point of care diagnosis is going to be integral,” she said. It would not solve all problems, she added, “it has to be within a functioning health system.”
But, highlighting what improved tools in all settings could one day accomplish, the event ended with insights from Dr. Debbi Persaud. Her reporting in 2013 of the Mississippi baby, born with HIV, treated early and aggressively, lost to care for months, and yet returned to care with no rebound of the virus, showed what science can do.
Yes, she is certain that the child was infected with HIV, she said. Documentation of the child’s viral load while hospitalized during the first weeks of her life proved it. Yes, the child who returned to care was the same child who left, DNA testing proved that. Yes, when she finally was convinced that a child with HIV no longer was threatened by the virus, she thought, “Eureka.”
“It was proof of concept,” she explained. “There was no definition for pediatric cure when we stumbled on the Mississippi baby.”
But while the discovery was fortuitous, it was no accident, she said.
“We would not have uncovered the Mississippi child without a 15-year investment in viral reservoir research.”