HIV-Positive and Pregnant in the United States: What It Really Means and What We Can Do About It

by Margo Kaplan
CHLP Director of Planning and Research

Last week, news reports circulated the story of Svetlana Izambayeva, a 28-year-old Russian woman who has been trying to gain custody of her younger brother from a Russian orphanage since their mother died in February. Russian authorities denied Izambayeva custody not because of concerns about her ability to raise Sasha—on the contrary, she has two children of her own—but because Izambayeva is HIV-positive. "Infectious diseases are cause for denying child custody, until cured," the letter from social services officials reads. "Your illness qualifies as infectious."

This story has been widely circulated as evidence of HIV stigma in Russia; meanwhile, such discrimination is, in fact, thriving in the United States. Here, women living with HIV are regularly considered incapable or unworthy of having children and, for those who are pregnant, of making appropriate medical decisions throughout their pregnancy. This summer, I wrote a blog about "QLT," an HIV-positive pregnant woman whose prison sentence was extended solely to keep her in prison for the duration of her pregnancy because the judge did not trust her to obtain medical attention outside of prison. QLT's case reflects a wider societal judgment about HIV-positive women; indeed, according to a recent Amfar survey, only 14% of U.S. residents surveyed believed HIV positive women should have children, and a third stated that they "would not support at all" an HIV-positive woman's decision to have a child.

Many who share this belief cite the well-being of the child, but their view is not supported by the facts. Medical advancements over the last decade have nearly eliminated mother-to-child HIV transmission in the United States. Where appropriate, interventions such as antiretroviral drugs (ARVs) and forgoing breastfeeding can reduce the risk of transmission from 25% to less than 2%. ARVs and other medical advances mean HIV does not prevent parents living with HIV from raising their children like other parents managing chronic medical conditions. What distinguishes parents—and in particular women—living with HIV is not their medical condition, but rather an environment of stigma and discrimination that can compromise both their legal rights and their medical care. For reasons more closely related to class bias and unconscious racism than to documented patterns of neglect, HIV infection is too frequently treated as a marker for actual and potential negligence.

In response to this problem, the Center for HIV Law and Policy recently released HIV and Pregnancy: Medical and Legal Considerations for Women and Their Advocates. HIV and Pregnancy provides an analysis of the issues and options women living with HIV face in pregnancy, and charts the intersecting medical, ethical, and legal issues that can arise for HIV-positive women who are or may become pregnant. It addresses multiple common assumptions surrounding this issue: that women with HIV should not become pregnant, that when they do they have no right to weigh and choose different treatment options, and that if their newborn is HIV-positive then they must have done something wrong. While all patients have the right to make informed medical choices that are best for their individual circumstances, pregnant women living with HIV are often treated as an exception to this rule by nature of their pregnancy and HIV status. They are treated like vectors of disease who simply must be told what to do, rather than autonomous individuals with the right to make informed reproductive health choices.

Without context and information, these choices might seem simple; in reality, the experience of many women is far more complex. Many women fear that the same drugs that can significantly decrease the risk of HIV transmission from mother to infant may have troubling long-term health consequences for both themselves and their children. The research about the relative benefits and harms of different ARVs, types of delivery, infant feeding methods, and other factors is far from complete. Women at greatest risk—including poor women, substance users, sex workers, and survivors of domestic violence—often have, at best, very fragile connections to health care. Many have experienced disrespectful treatment from doctors, service providers, and bureaucrats and rely on their peers for information about HIV, other health issues, and medicine. Some women who harbor mistrust of health care providers or drug companies may also be persuaded by the misinformation about HIV or the drugs used to treat it that they find online or in the community. In addition, HIV-positive pregnant women may fear that medication will be forced on them and that the state will seize their children.

HIV and Pregnancy underscores not only the legal basis, but the public health advantage, of treating HIV-positive women as active partners in their own and their newborns' treatment, and recognizing their right to appropriate counseling and medical care that accommodates their reproductive options. Responding to these patients' concerns by refusing information and attempting to coerce reproductive choices or medical treatment not only perpetuates distrust between the patients and the health care community, but also violates the right of each of these women to make informed health care choices. Health care providers and advocates have an obligation to inform and respect the decisions of pregnant women and new mothers who are anxious about HIV testing, and those who are already HIV-positive and managing their own HIV care while trying to prevent transmission to their children. In order to benefit from the medical advances that can reduce perinatal transmission and extend health and life, women need accurate, complete, and understandable information that trustworthy professionals provide honestly and respectfully. Health and legal advocates can help women make informed health decisions and protect their rights, but only if they take the time to address the concerns these women have about testing, the risks of antiretroviral treatments, HIV itself, and the role of the state in women's lives.