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Notes and Quotes

Susman, Ed

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Despite the controversy, HIV prenatal testing laws get the job done

Since the time in the early 1980s when it became devastatingly apparent that HIV could be passed vertically from an infected pregnant mother to her newborn, doctors, scientists and lawmakers have debated the merits of whether HIV testing should be mandatory.

The argument in favor of such laws includes the identification of infected mothers, the identification of other possibly infected household members and treatment to prevent spread of the virus to the infant. Of course, the last point became a viable part of the argument only after tests proved that the transmission rate could be effectively reduced to 1% or less through the use of antiretroviral agents at labour, by intensive combination therapy during pregnancy and by performing elective Cesarian deliveries.

The argument against such laws continues to be that coercion is not good medical practice; not good moral practice and it is likely to lead to mothers to avoid seeking prenatal care.

The US Centers for Disease Control and Prevention (CDC) recommends prenatal testing for pregnant women, but that testing is voluntary, said Dr. Mary Glenn Fowler, MD, chief of the maternal/child transmission section of the CDC's Division of HIV/AIDS Prevention. ‘‘We believe that mandatory testing will drive women away from seeking prenatal care which will be detrimental to both mother and child. We know that when prenatal counseling is performed well that most women will do the right thing for themselves and their children.’’ Dr. Fowler said.

The American Civil Liberties Union, a non-governmental organization that aims to protect civil rights, similarly opposes prenatal testing. ‘‘In the case of pregnant women and newborns, the facts do not justify mandatory HIV testing but rather show that counseling and voluntary testing is a less intrusive way of promoting health.’’ the ACLU's position statement on testing reads. ‘‘Indeed, counseling and voluntary testing are more effective than forced testing because they encourage women to receive ongoing medical care for themselves and their babies, instead of driving them away from health care services.’'

Dr. Fowler said there are some studies that show that in some states voluntary programs for testing for certain diseases work better than mandatory testing. However, she said she knows of no studies that provide proof that mandatory HIV testing reduces the number of women who seek prenatal care for themselves and their babies.

In Europe, the issue of mandatory testing for pregnant women barely reaches the radar screen. ‘‘It is not a major issue here,’’ said Dr. Roel Coutinho MD, PhD, director of the Municipal Health Service, Amsterdam, The Netherlands, and an editor of AIDS, ‘‘because we believe that most people will act responsibly in protecting their health and their child's health. Most Europeans would consider that mandatory testing is simply, in a word, unacceptable. More importantly, however, we view mandatory testing of pregnant women for HIV as an excuse for the physician not to spend the time to counsel people about the needs for these tests. It would be an excuse for not giving out a lot of information.’’ Instead of having to explain carefully why HIV testing is important and what the results can mean, Coutinho said that physicians or nurses can simply say, ‘‘It's the law. Roll up your sleeve.’’ Coutinho also said that in most European countries the prevalence of HIV in pregnant women is not nearly as high as in the US, especially among US minority populations.

But in Connecticut in the United States, legislators, noting that treatments are available to prevent disease transmission passed laws requiring all children to be tested for HIV status at birth – if the status of the mother is not known. In effect, since 1 October 1999, the statute demands that women be told that unless they are tested at least twice during pregnancy, their babies will be tested for the disease at birth. Effectively, doctors say, that requires prenatal testing; when mothers-to-be learn the options either they or their child get tested, or the women allow testing prior to birth. New York State also mandates HIV testing for all newborns. The first reports on the effect of the Connecticut law were presented at the 50th anniversary meeting of the American College of Obstetricians and Gynecologists (ACOG) in Chicago, Illinois. The outcome was that the controversial law does achieve what it was intended to do. Through its implementation babies who might not have been given a chance to start life disease-free have come into the world without HIV infection. ‘‘I was opposed to the law that requires testing,’’ said Dr. Urania Magriples, MD, associate professor of obstetrics and gynecology at Yale University School of Medicine, New Haven, Conn. ‘‘but the law does work.’’ Her own study found that if women are given a choice as to whether to have HIV testing most decline to get tested. If it is required by law, most accept the statute and submit to testing. The law gives people an out: if they claim a religious exemption they don't have to be tested. However they get two opportunities, one when they are asked to be tested, the second when they have to decide if their child should be tested. Dr. Magriples said she feels that the law is coercive, but her study at Yale found that before the law was passed less than 40 percent of women underwent testing, and after the law more than 95 percent of women allowed themselves to be tested for the disease.

In a second study presented at ACOG by doctors at Stamford Hospital, Dr. William Cusick, MD, assistant clinical professor of obstetrics and gynecology at Columbia University, New York, said that mandatory testing uncovered seven pregnant women who were apparently unaware they had HIV infection. Those women were immediately started on highly active antiretroviral therapy (HAART), and all the women delivered babies that were free of disease. The children continue to be free of the virus a year later. More than 2300 children were born at the hospital during the period of the study, October 1999 to July 2000.

Based on the natural history of the disease, about 30 percent of babies whose mothers have HIV are infected at birth. Extrapolating that information, Dr. Cusick estimated that mandatory testing prevented one or two babies from becoming infected at his hospital which includes children from all over Fairfield County in Connecticut and parts of Westchester County in New York. ‘‘Being able to save one child in nine months is worth it, I think.’’ Dr. Cusick said. ‘‘There are few times in medicine you can prevent a lethal disease.’'

When the women tested positive for HIV infection, the doctors then requested that family members be brought in for testing as well. In the Stamford cohort, that additional testing discovered that the spouse and young son of one women were also HIV positive. Both the husband and child were immediately started on HAART. Dr. Cusick said that if there was no law in place requiring testing then the probability is that six of the nine people who didn't know they were infected with HIV would not have been identified and would not be receiving treatment. He said that when women are told that they must submit to the testing – except for religious grounds – `‘most of them do not object.’’ Dr. Magriples concurred. Very few women signed a form refusing to allow the testing, she said. And among those that originally refused – about 10 percent of the total – about half agreed to testing when counseled later. ‘‘I believe they realized that the tests were to benefit their child and that's why they consented.’’ she said. She said the nearly universal testing has found about 10 more infected pregnant women than would have been expected historically. Prior to the testing law about 15 pregnant HIV infected women were seen at Yale; since the law, the staff sees about 25 infected women. ‘‘We have traditionally seen a very low rate of infection from mother to child,’’ Dr. Magriples said, ‘‘in the neighborhood of about one percent.’’ She said the mandatory testing hasn't changed those figures. However, Coutinho of Amsterdam took issue with the study. ‘‘If the doctors spent the time to counsel patients perhaps the same figures would have been developed.’’ he said. ‘‘These studies are not convincing enough to me that we should go in this direction – mandatory testing – to identify pregnant women with HIV infection.’'

ACOG, which represents 40 000 obstetricians and gynecologists, and the American Academy of Pediatrics, in a 1999 policy statement, called for universal HIV testing of pregnant women, but did not support mandatory testing. Dr. Cusick said that Connecticut has led the way in counseling and testing for HIV, and the studies presented at ACOG show that ‘‘a policy of mandatory HIV prenatal screening is achievable and desirable.’'

While the debate continues over whether mandatory testing is the right thing to do, Dr. Cusick ticked off the benefits: the infected mothers receive prompt, effective antiretroviral therapy; HIV-infected relatives are identified and treated earlier; and neonatal transmission of HIV to infants is prevented.

The CDC's Dr. Fowler suggested that the laws mandating testing may be putting pressure on doctors to counsel pregnant women more strongly. If the child has to be tested at the hospital, she said, it puts a lot of pressure on the hospital laboratory personnel to turn around the tests quickly because the child and mother may only be at the facility for a brief period of time. If the hospitals tell doctors to get the tests done before delivery, it gives everyone concerned more time to get the job done. So, she said, the laws put pressure on hospitals to perform the tests rapidly and to relieve that stress the onus is put on doctors to make sure they offer testing to the pregnant woman. ‘‘Our experience is similar to others,’’ Dr. Fowler said, ‘‘when women realize that the testing can benefit their child they almost always accept it.’'

© 2001 Lippincott Williams & Wilkins, Inc.