May 1997
ALBANY, N.Y. — Hospitals in New York State have begun "unblinded'' mandatory testing of newborns for HIV that is sure to be a litmus test nationwide for states tinkering with similar ideas and for some inner city hospitals wrestling with high numbers of HIV-positive mothers.
The pilot program was borne out of a law implemented in February by state legislators mandating hospitals to test all babies for HIV regardless of whether new mothers gave their permission to be notified or not. Previously, hospitals needed the mother's consent before testing the infant and disclosing the results.
The new law eliminates the need for mom's consent.
Before the baby is sent home, a nurse does a simple needle prick that draws a small amount of blood from the newborn's heel. The blood is placed in a series of circles on filter paper and sent to a state laboratory where the blood is tested for phenylketonuria, hypothyroidism, sickle cell disease as well as HIV.
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Since the late 1980s many states have required their labs to test for HIV antibodies to provide epidemiologic data. Before the unblinded mandate, lab technicians would simply remove the identity sticker on the blood sample to protect the mom's identity. Since February, the identity sticker remains, and the lab is required to inform the mother's hospital of the infant's condition. The hospital, in turn, must tell the mother.
However, the baby's blood test reveals the mother's HIV status through the presence of maternal antibodies; and this is what has caused the firestorm. Civil rights leaders are concerned that the mother's civil rights are being violated, and pediatricians are concerned because giving a pregnant woman zidovudine (AZT, Retrovir, Glaxo Wellcome) before the child is born may prevent transmission in the first place. So, finding out the status after birth is too late.
And then there are particular problems with the test the state mandates. Some doctors say the problem with this particular test is that it does not definitively indicate the baby will suffer full blown AIDS later in life because infants usually shed their mother's antibodies after birth. There are other tests that tell just the infants status, like the p24 antigen test, but these tests are not being used.
"There is no better test out there right now than the mandated TCP test,'' said Lou Cooper, MD, member of the board of directors of the American Academy of Pediatrics. "It's the most sensitive test out there for picking up [AIDS] antibodies and one that has the least chance of giving a false reading.''
Other pediatricians dispute the wisdom of treating HIV-infected pregnant women with AZT five times a day because so much is unknown about the toxic effects on the child in the long term. However, most pediatricians feel confident in both the test and treatment.
"Women treated with AZT prenatally and during delivery reduce the likelihood that their babies will be infected — from 23% without AZT to about 8% with it. A baby treated after birth with AZT has a longer and healthier life, sure, but a life defined by the virus,'' said Margaret Polaneczky, MD, director of the maternal-pediatric HIV counseling unit at New York Hospital. "If you're going to mandate that all women be tested without their permission, then at least do it when you can make a difference, because postpartum is just too late.''
A study by the National Institutes of Health (NIH) to see whether HIVIG (HIV immune globulin) combined with AZT treatments reduced HIV transmission from infected pregnant women to their infants confirms Polanecszky's view. NIH researchers found an unexpectedly low transmission rate of only 4.8% from mothers to infants treated with the AZT and HIVIG combination. However, studies have yet to determine long-term effects of AZT on humans, researchers said.
NIH officials also pointed out that mother-to-child transmission of HIV accounts for almost all HIV infection in infants and children worldwide. More than 7,629 cases of pediatric AIDS have been reported across the country and of those, 4,406 have died.
Currently, AIDS is the seventh leading cause of death for American children between 1 and 14 years of age. In New York State alone it is the leading cause of death for black children and the second leading cause of death of Hispanic children. In addition to children living with AIDS there are 10,000 other children infected with HIV who have not yet developed AIDS.
Approximately 7,000 infants are born to HIV-infected mothers each year in this country. While not all newborns become infected, the transmission rate is about 23% without AZT treatment. Breast-feeding also greatly enhances the risk that the HIV-positive mom will pass the virus to her baby, NIH officials said.
New York Department of Health statistics show 1:4 newborns exposed to HIV in the womb actually become infected with the virus. Also, the number of babies testing HIV-positive in the Big Apple has declined in recent years from a high of 1,900 in 1990 to just under 1,100 for the first 10 months of 1996.
Since hospitals receive test results two to six weeks after the baby's birth, tracking down mothers and children after they leave the hospital will require effort and expense. In fact, many hospitals are worried about money, extra work and sensitive questions relating to the confidentiality requirements of dealing with AIDS. California and Florida are wrestling with measures similar to New York's, but so far they have not garnered enough support in their state houses.
"No one believes that newborns found to be HIV-positive should not be treated, or that their mothers remain ignorant of their condition,'' said Terry McGovern, an attorney representing several New York hospitals. "But this is a huge unfunded mandate that hospitals and health care workers would be glad to carry out if they had the staffing available to do it.''
McGovern said before the disclosures were mandated, the state had always required hospitals to ask women whether they wanted to know their test results. McGovern pointed to one study that found only 13 of 269 HIV-infected women declined notification of their results, and only 32 more infected moms were not offered a chance to learn their test results.
But knowing their results and doing something about the lifestyle changes involved seem to be two different things for some at-risk mothers.
A 1994 study done at Yale University's School of Medicine and published in the August Journal of the American Medical Association, demonstrated how limited the effects of HIV counseling and testing were for women. The study used two groups of women, one receiving counseling and the other not receiving it. Counselors were recruited to explain HIV antibody tests and procedures for confidentiality to the counseled women as well as supply written materials to reinforce their prevention recommendations.
The counselors then measured the women's behavior based on sexual activity, condom use and partner risk factors. The study found that there was no difference in at-risk behavior between those who were counseled about safe sex and those who were not.
But there is no doubt among doctors that something has to be done to contain the spread of HIV and other diseases threatening to engulf America's inner cities. A policy paper issued by the American College of Physicians at its recent convention in Philadelphia states city dwellers are paying an "urban health penalty'' pushed to alarming levels by the ravages of inner-city poverty, where residents have no health insurance, few doctors are available, nutrition is poor, overcrowding common and many are homeless.
The physicians are lobbying the government to create a commission to marshal medical forces into America's cities. Doctors report the erosion of services like care to pregnant women, young mothers and children on Medicaid is already underway, and that public hospitals are going broke in providing disproportionate amounts of service like pediatric and neonatal intensive care to the uninsured urban poor.
For more information:
- Ickovics JR, Morril AC, Beren S, et al. Limited effects of HIV counseling and testing for women. JAMA.1994;272:443-48.
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