My daughter's been on HIV medication for 13 years, since she was born," said Jan K. "She was severely ill from some of the medications. She's been through four regimens. Her growth has been affected, and her walking. All the drugs have such a strong effect on them. That's why this research is crucial."
Why the plaintive plug for research on kids with HIV? Because the Pediatric AIDS Clinical Trials Group (PACTG) has been pulling the plug on sites since February, when the National Institute of Allergy and Infectious Diseases (NIAID) quietly announced a five-year grant of $36 million per year -- "flat-funding," a.k.a. cost-cutting. "Overall funding for the PACTG has functionally declined in the last three years," said Stephen Spector, MD, the group's chair.
A "disappointed" Paul Palumbo, MD, PACTG vice-chair, said, "We're one of the few networks targeting children that can help jump-start trials in the developing world." Stretching their dollars to open sites in South Africa and Thailand, the feds defunded four clinical-trial units at home, causing a chain reaction that closed 10 pediatric sites. Pissed parents like Jan K. are complaining not that the global AIDS program is sucking up bucks that should go to American HIVers, but that NIAID, a $2 billion agency, could easily have found the $4 million to bridge the gap.
Penny-wise, pound-foolish? So says Spector: "The funding situation also has the potential to discourage young investigators from going into the field of pediatric research." That's troubling, because basic life-and-death questions persist about how to treat HIV in the nation's 9,000 infected children under 15: Even HAART dosing is being debated. The federal government will conduct an annual review of the PACTG funding early next year.