February 13, 1996 | Executive Memorandum on Health Care
Testing mothers and their babies for AIDS and communicating the results to the mother and her attending physician is not routine. It is a major deviation from standard medical practice in the case of many other contagious diseases which may threaten the life or health of the newborn. Today, for example, most states require that newborn babies be tested for a variety of diseases, including syphilis, and that the results be communicated to the mother and her attending physician. The Ryan White Care Reauthorization Act, which is now in a House/Senate conference, could save the lives of hundreds of babies each year by requiring an AIDS test. It could also save the country hundreds of millions of dollars needed to treat children with AIDS whose condition could have been detected at birth and treated more effectively.
Two sharply different policies are before the conference committee on the Ryan White Care Reauthorization Act. The first, supported by Senator Nancy Kassebaum (R-KS), continues current policy by encouraging voluntary testing and mandating the counseling of all pregnant women in states designated as having the highest incidence of the HIV virus. The second, supported by Representatives Gary Ackerman (D-NY) and Tom Coburn (R-OK), requires that newborns whose mothers' AIDS status is unknown be tested as a condition for receiving funds under the Act. Thus, every child would have to be tested for HIV if the mother had not been tested, and the state would communicate the results to the mother and attending physician. The Ackerman-Coburn provision is not an unfunded mandate, however, since the money for testing would be included in the appropriated federal funds.
While the Senate version values the "privacy" of the mother, the House version wisely values the lives of the babies while upholding confidentiality -- which already is standard medical practice.
The Ackerman-Coburn policy would result in saved lives and reduced costs. Medical researchers say that AZT treatment of a mother with AIDS during pregnancy and labor, and of the baby for a period after birth, reduces the incidence of AIDS in these babies by about 65 percent. Today, about 25 percent of babies born to such mothers eventually succumb to full-blown HIV infection and die in their early years. With AZT treatment, this death rate is reduced to about 8 percent.
Such a policy saves many lives while also cutting the cost of treatment. Treating HIV-infected (and dying) babies costs about $240 million annually. Treating at-risk babies in the womb and immediately after birth with AZT would cost about $12 million, leaving more money for research, better public health, and other essential purposes.
Today's voluntary testing policy simply means that some mothers, however unwittingly, may be endangering their babies' lives. Many babies infected with the HIV virus, for example, go home with their mothers not knowing they are infected. Worse, uninfected babies born to mothers ignorant of their own infection can contract the disease from their mothers' milk. Furthermore, immunizing a baby with the AIDS virus against various diseases in the standard fashion can weaken rather than strengthen the child's health. Any such child who gets an infection as a byproduct of the immunization is at much greater risk of a serious breakdown in health than is a normal baby. For all of these children, the knowledge that they are HIV positive would alter the course of medical treatment.
Because of the continuing social stigma attached to AIDS, many policymakers oppose mandatory reporting of the infection to public health authorities, as well as any requirement that either the carrier of the disease or others who may have been infected by the carrier be identified. But this ignores the public health aspects of this contagious disease. Moreover, whatever case might be made for maintaining today's policy for adults, it does not exist for newborns. According to the only survey of pregnant mothers on this subject, conducted by New York City's Bellevue Hospital, no mother reported that she would avoid prenatal care if there was mandatory testing. The frustration for doctors is that 25 percent of mothers at risk for AIDS do not avail themselves of voluntary testing. Since 1988, in New York State alone, an estimated 12,000 babies have not been treated properly because of a lack of mandatory testing.
Approximately 7,000 mothers who are HIV positive, and will eventually succumb to AIDS, give birth each year. Of these births, approximately 1,800 babies (25 percent) will be born with HIV antibodies present in their system. A further 14 percent of those born uninfected to these mothers will become HIV positive from their mothers' milk. Over 50 percent of the babies with HIV antibodies (around 900 annually) are not known by their physician or mother to be infected at birth. Of these, about 25 percent (approximately 200) die annually. With proper medical treatment, this number can be reduced to about 8 percent, or around 70 deaths per year. Under current policy, however, the number of undiagnosed, untreated, needlessly dying babies will continue to grow as AIDS continues to spread.
Many public officials and health professionals want a change in policy. For example, the Centers for Disease Control's own subcommittee on infant testing (a subcommittee of the review committee on prenatal testing and counseling guidelines), recommended the approach taken by Representatives Ackerman and Coburn. New York Governor George Pataki calls the Senate version "unfortunate" and strongly supports the Ackerman-Coburn policy. New York has the largest number of AIDS-infected babies in the country. And Dr. James Coplan, a member of the Department of Pediatrics and Obstetrics and Gynecology at the State University of New York Health Sciences Center at Syracuse, says that "As AIDS spreads to [suburban populations] HIV infections in pregnant women or newborn infants is likely to become progressively harder to detect, unless universal screening is adopted."1
The Ryan White Care Reauthorization Act presents Members of Congress with a clear choice. They can support a new policy grounded in standard medical practice and save hundreds of babies' lives. Or they can continue a policy that leads to unnecessary deaths of newborn babies exposed to AIDS.
1. James Coplan et al., "Failure to Identify Human Immunodeficiency Virus-Seropositive Newborns: Epidemiology and Enrollment Patterns in a Predominantly White, Nonurban Setting," Pediatrics, Vol. 96, No. 6 (December 1995).