The ACLU on HIV Testing of Pregnant Women and Newborns
Proposals for mandatory HIV testing of vulnerable populations have always met strong resistance from defenders of privacy. Testing people against their will and then telling them their HIV status is hardly the best way to offer effective treatment or persuade people to take steps to reduce the risks of transmission to others. But advances in science have lead many to reconsider. Do the potential benefits of testing in some contexts outweigh the privacy interests? The argument is nowhere more heated than in the context of pregnant women and newborns.
It is now clear that with the proper regimen, beginning in the third trimester of pregnancy, the chances of a newborn contracting its mothers’ HIV can be dramatically reduced – from around a one-in-four chance that the newborn will be infected, to as low as around one in fifty. These promising discoveries have led to a rash of proposals for mandatory testing of pregnant women and newborns so that treatment can begin immediately. So far, only the legislatures of New York and Connecticut have enacted mandatory programs that impose HIV tests without consent where pregnant women turn down the “”offer”” of testing.
At first blush, it might seem like there could hardly be a more compelling case for forced testing. Children’s lives are at stake. But responding to perinatal testing proposals in a thoughtful way requires a hard look at the science. What that hard look shows is that few of the new proposals – and none that have been enacted into law – advance our ability to stem transmission to infants in a meaningful way.
Here’s what the science shows. A pregnant woman, infected with HIV, has a base-line one-in-four chance of transmitting HIV to her newborn if she takes no treatment at all. The transmission occurs most often during delivery, because delivery is when the infant is exposed to the most blood of the mother without the protection of the umbilical barrier. Intrauterine (pre-delivery) transmission is rare. Transmission can also occur through breastfeeding after delivery.
When an infant is born to an HIV-positive mother, HIV-antibody tests on the newborn will always be positive because the baby has inherited the HIV antibodies of its mother. This does not necessarily mean, however, that the infant is infected. Not until the mother’s antibodies disappear from the infant’s system – which takes a few months at least – will HIV antibody tests on the baby show the baby’s own status rather than the mother’s.
Two elements are critical to reducing the likelihood of transmission. One is reducing the mother’s viral load, especially at the moment of delivery. The other is reducing the amount of the mother’s blood that the baby is exposed to during the delivery. The recommended course of treatment therefore addresses both of these factors. Studies show that a course of AZT treatment for the mother that begins six weeks prior to delivery, includes a strong dose during delivery, and continues with the newborn for six weeks affects the viral load in the blood and can, by itself, reduce the likelihood of transmission from 25% down to around 4%. At the time of delivery, choosing to give birth through caesarian section–which includes much less exposure to blood– rather than through a vaginal delivery also cuts the rates of transmission in half. Doing both the AZT treatment and an elective caesarian section together, therefore, cuts the chances that the newborn will be infected down to around 2%.
Other regimens can also be effective in reducing transmission. Even if treatment only begins at the time of delivery, a powerful dosage of another drug, neviropine, to both the mother and the infant during labor can reduce transmission rates to about 8%. If treatment begins after birth, giving a newborn AZT within 12-24 hours after birth reduces transmission rates to about 9.5%. However–and this is criticized–starting AZT anytime more than 48 hours after birth, has no impact.
Those are powerful numbers – with comprehensive treatment, more than a ten-fold reduction in the likelihood that a newborn will be infected with the virus. They merit a re-examination of the position long-held by advocates of people with HIV that any mass testing programs are ill-advised. But do they justify mandatory testing of all pregnant women? There are good reasons why they might not.
For one thing, the AZT treatment itself can be highly toxic. Given the risks it poses, it would hardly be unreasonable for a pregnant woman with HIV to decide not to undertake the regimen, whether because of considerations about her own health or the unknown long-term effects on the baby. Also, informing a woman against her will that she is infected does not mean she would automatically choose to undertake treatment with AZT, when the risk of transmission is already only one-in-four if she does nothing. On the other hand, for those women who do not know their HIV status but would act to prevent transmission to her infant if they knew, a mandatory testing program could mean far fewer infected newborns. But those may be the same women who are most likely to consent to testing on their own.
The science poses difficult questions. As it turns out, however, the mandatory testing programs instituted in New York and Connecticut do nothing to address them. The programs both require pre-natal counseling of pregnant women that includes information about HIV and the importance of early treatment to reducing the risks of transmission. But if the woman turns down the offer to be tested, there is no requirement that she be tested against her will, even through the stage of delivery. But if she does not have current HIV test results in her records when the baby is born, both states mandate that the newborn be tested and, if positive, treatment initiated.
Since most transmission occurs during delivery, testing the baby afterward is too late for most of the preventive efforts. Plus, the test results on the baby will only show the mother’s antibodies, so they are not an accurate indication of whether the infant is infected. And even worse, by the time the test results come back, it will most likely be too late to initiate effective therapy for the infant at all – at least therapy that could reduce the likelihood of infection, rather than treat any infection that might already be there.
Finally, consider the real-life scenario at the hospital: exhausted mother receives the news from the doctor. Her infant tested positive for HIV. She is infected, and her child has a one-quarter chance of infection as well. This, after she has refused to be tested throughout her pregnancy. And then she has to make an immediate decision: start her baby on an intensive regimen of highly toxic drugs whose long-term effects are unknown, or take the three-in-four chance that the baby does not require the therapy at all? (And that decision may, by the time she makes it, be moot – if the test results are not back within about 24 hours, the therapy will be of no help at all).
Clearly, testing the newborn after delivery is about the least effective program of mandatory testing that the legislature could have implemented. Whether or not a testing program for pregnant women may be advisable, a testing program for infants makes no sense.
Might a compelled testing program for pregnant women be a good idea? The experiences of one woman in New Jersey may suggest that it is not. The woman, participating in a state-supported prenatal testing program, was counseled about HIV risks for herself and her fetus but, after thinking about whether she wanted to be tested or not, turned down the opportunity for testing. Her hospital continued to “”offer”” the test, and, despite her insistent refusals, went ahead and tested her blood without her consent. She learned she was HIV-positive. At first, she tried to take AZT, but the side effects were intolerable. She chose to stop taking the drugs in the hopes that she would conserve her strength to carry on with her pregnancy. For that, the hospital considered her an abusive mother and called the state’s child welfare services. When she continued to refuse AZT treatment during delivery — willing to take the one-in-four risk of infection over the unknown risks of high doses of a potentially toxic drug to herself and her newborn — the hospital obtained a court order for guardianship of her infant. They took away her baby, took away her right to decide what’s good for her child, and took control of the child’s treatment by injecting her with high doses of AZT. They then turned the child over to foster care.
Was that the right thing to do? The baby turned out not to be infected. She may never have been infected to begin with. In the mean time, the hospital’s actions show the potential dangers of a mandatory testing program: if the state has the power to force a test, does it have the power as well to force unwanted treatment? What about taking away a parent’s right to decide the treatment for her child? Mandatory testing of pregnant women can only make sense when the state is willing to do all three, because without the treatment, testing may be a hollow gesture. And none of it is a good way to deliver effective medical care for HIV-infected women and their children.
The science can make a compelling case that early testing of pregnant women, with counseling about the benefits of treatment, is a very good idea. But it’s not so compelling that the tests should be mandatory. Certainly it’s true that a program of mandatory testing of newborns does not make sense. If intervention is going to happen it should happen when it matters: during pregnancy. But even then, intervention without the cooperation of women throughout the course of treatment and care for the child will not help reduce transmission, and is likely only to worsen womens’ trust in the health care they do receive.
ACLU AIDS Project
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