This article is part of a series on global AIDS issues to be published by RH Reality
Check throughout December 2009. Other articles in the series can be
found by searching "global AIDS 2009" on Rewire.
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
This summer, I wrote an article 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 percent of U.S. residents surveyed believed HIV- positive women should have
children, and 33 percent stated that they “would not support at all” an
HIV-positive woman’s decision to have a child.
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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 anti-retroviral drugs (ARVs) and forgoing breastfeeding can reduce the
risk of transmission from 25 percent to less than 2 percent. 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
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, amnog which are that women with HIV should not become
pregnant, but 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
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
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 their patients’
deeply felt concerns about testing, the risks of antiretroviral treatments, HIV
itself, and the role of the state in women’s lives.