HIV Babies

Last year, it was cause for celebration. The cause of celebration was for the results that several clinical trials of zidovudine cut the risk for mother to child transmission of human immune deficiency virus (HIV) by two thirds. Although, this year, it is the basis for new federal recommendations that all pregnant women should receive HIV testing and counseling. But, these findings have been cause of protests by several activist groups. Activists fear that conservative legislators and policy makers will use the clinical data to justify mandatory testing and treatment for pregnant women. During the latter part of February, the United States Public Health Services published guidelines for HIV pregnant women in the Federal Register. Which coincidentally was published on the same day as the National Conference in Washington, DC for "HIV infection in women: Setting a New Agenda." The conference included activists, physicians and HIV positive women who used the meeting as a forum to voice their concerns about how best to balance women's own medical needs with those of their infants. Other concerns of activists that were voiced were that they don't want laws, policies or medical care imposed on women merely as "vectors" who may transmit HIV to their infants. The new guidelines recommend that all pregnant women should receive HIV counseling and testing. These guidelines are aimed at helping pregnant women know their HIV status early so that medical care, including zidovudine (Retrovir, known as AZT, Burroughs Welcome Co., Research Triangle Park, NC), can be made available. The new guidelines also reiterate previous federal health advisories that say counseling should precede HIV testing. Physicians and other health professionals who counsel women should be well informed about the complex issues that face HIV infected pregnant women, according to the guidelines. This information should include about all of their reproductive options. Women should also be advised that in order to help reduce prenatal HIV transmissions HIV infected women in the United States should not breast feed their infants. The guidelines further states that all HIV testing should be voluntary for women and their infants. Also, all decisions about AZT use should be made by the HIV infected pregnant woman in a non coercive atmosphere and based on a balance of the benefits an potential risks of the regimen to herself and her child. The guidelines also state that women who are infected or refuse testing must not be denied medical care, reported to child protective agencies, or discriminated against in any way. The center for Disease control and Prevention (CDC), Atlanta, GA. reports that as of December 31, 1994, there were 58,448 women with AIDS in the United States. Nearly one fourth of the total were reported in 1994 alone. AIDS is now the fourth leading cause of death in US women ages 25 to 44 and in 15 major United States cities. In 1993, the CDC estimated that 7,000 HIV infected women gave birth in this country, in other words, about one in every 625 women who gave birth that year was HIV positive. The rate of mother to child transmission rate ranged from 15% to 30%, which is estimated that there were as many as 2,000 HIV infected infants born in the United States in 1993. Much of the controversy centers on AIDS Clinical Trials Group (ACTG) protocol 076. In the 2 year study, 239 of the 477 HIV infected women enrolled received AZT during pregnancy and delivery. Their infants received the drug for six weeks. At 18 months, 8.3% of the infants in the treatment group vs. 25.5 % of the controls were infected. "Evidence based on every analysis that has been done of the outcomes to date shows that this is a prevention breakthrough," said Wanda Jones, DrPH, acting associate director of CDC's office of Women's Health. Activists believe that the data is incomplete and should not be used as the basis for federal guidelines. They wanted to know the effects AZT might have on the estimated 75% of infants who are born to HIV positive mothers but don't seroconvert, and whether a pregnant woman who takes AZT early in the course of infection will still benefit from the drug later, when she is sicker. They also wanted to know what the long term effects may be if women take AZT during multiple pregnancies, and whether ACTG 076 showed a correlation between high maternal viral load and the likelihood of transmission. A few small studies, including one from New York State Health Department, are beginning to point in that direction. Jones of the CDC conceded that the study leaves many question unanswered. However, it is the only one ever to have demonstrated any effective method of preventing maternal fetal HIV transmission. "It would be irresponsible for us not to be out front on this," she said. James W. Curran, MD MPH, associate director for HIV/AIDS at the CDC added that, "The reason we published these guidelines is that we believe they represent the very best in public health practice." Besides their scientific concerns, activists also believe that the guidelines come at a politically tenuous time. Two years ago, before the ACTG 076 results were announced and before Congress took a conservative turn, New York lawmakers considered legislation to unbind mandatory testing of newborns so that seropositive infants could be identified. The law failed. But now, since the clinical results have been widely publicized, a similar bill is pending in Congress. For example, in Illinois, lawmakers are considering a bill that would mandate HIV testing and counseling for all pregnant women. And in New York, they have proposed legislation would mandate testing of pregnant women without requiring counseling. Experts say that initiative like those in Illinois and New York are likely to crop up in more states. To counter pro-mandatory testing movements, activists have urged federal health officials to strengthen language in the guidelines before they are finalized so that the document won't be construed as supportive of mandatory testing. Mandatory testing has been controversial since the AIDS epidemic began. Opponents contend that is violates civil rights, results in discrimination and may drive some people away from receiving the medical care they need. Therefore, without a stronger message in support of voluntary testing the guidelines may become a way to discriminate against pregnant women who are HIV positive.

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