How Politics Undermines Good Science : Under pressure, federal government suspends confidential newborn AIDS survey
Over the last seven years, the Centers for Disease Control have taken more than 12.5 million anonymous blood samples from newborns in 45 states to track HIV patterns in childbearing women and help states direct health resources to where they are most needed. But now the federal Department of Health and Human Services has suspended the program, and therein lies a tale of how not to make sound medical policy.
The program is a victim of well-meaning but misplaced efforts to halt AIDS in newborns. Under the program, parents and doctors are not informed of test results. There is a good reason for that, but not good enough for the members of Congress and state legislators who were ethically troubled by the withholding of this information. A bill by Rep. Gary L. Ackerman (D-N.Y.) to “unblind” the testing is pending in Congress, and a similar bill (SB 889), by state Sen. Tim Leslie (R-Carnelian Bay), was approved recently by the state Senate’s Health and Human Services Committee.
Leslie argues that the information is needed so treatment can begin and mothers can be urged to avoid breast-feeding, which transmits the mother’s virus in 1% or 2% of cases. Since California already tests every newborn for four genetic disorders, he asks, why not give AIDS treatment too? Likening the study to the infamous Alabama study in which syphilitic black men were denied treatment, he charges that babies are suffering to maintain the privacy so prized by AIDS advocates. That sounds cruel indeed.
However, the facts are otherwise. The test is not for the infant’s HIV status but the mother’s . About three-fourths of babies testing positive at birth show no infection later, because antibodies are passed but usually not the virus itself. CDC results become known long after birth, eliminating opportunity for immediate intervention.
Medical science has shown that transmission to child can be cut dramatically if the woman is put on AZT before and during delivery and then the infant is continued on the drug for six weeks. The key point here is that treatment must come long before birth. Indeed, CDC guidelines urge all doctors to counsel pregnant women about HIV and offer voluntary testing and treatment, and California already conducts extensive outreach and testing of young women. Confidentiality is essential to obtain accurate data, and the test--just a sample of births--is not a diagnostic tool. In any event, HIV infection in newborns, however tragic, is relatively rare.
Caving in to political pressure, the federal government has now suspended the $10.5-million program until it gets outside advice on how better to coordinate the survey with CDC guidelines for pre-birth counseling and treatment. The bills have almost no support from major medical groups or AIDS service organization. It is unfortunate that political forces have derailed a useful study. If politicians want to fight infant AIDS they should broaden programs to test women before birth, not undermine good science.
