Eradication of Vertical Transmission of HIV: A Response to Mayaux et al

To the Editor:

While the incidence of neonatal transmission of HIV has declined significantly in the United States since the introduction of zidovudine, the annual number of new cases of horizontally transmitted HIV remains unchanged.¹ Among women in the United States, the incidence of HIV infection continues to rise. In addition, due to advancements in treatment of HIV with highly active antiretroviral therapies, HIV-infected women are living longer and healthier and, therefore, with greater opportunity to reproduce.

Most women with HIV infection in the United States are able to obtain prenatal and HIV care to minimize the risk of transmitting the virus to their newborn. As a result, vertical transmission rates in most American centers are <1-2%.¹ Efforts to reduce mother-to-child transmission of HIV have been enormously successful, allowing a paradigm shift from reduction to eradication of vertical transmission. Tactics have not shifted accordingly. Is it possible that the kinds of interventions used to effect reduction may not be sufficient for achieving eradication? Perhaps the minority of women who were not reached by a current strategy for reducing vertical transmission require a different kind of message or attention.

In the November 2003 issue of the Journal of Acquired Immune Eeficiency Syndromes, Mayaux et al² reported on a French observational study of 2167 HIV-seropositive mothers who knew their HIV status, most of whom received antiretroviral prophylaxis and gave birth to HIV-seronegative babies (93.7%). A small number of these mothers (4.3%) did not get perinatal treatment and transmitted HIV at a much higher rate (17%). The authors conclude that earlier screening and focusing on a small subgroup of socially marginalized women could further reduce the vertical transmission of HIV.

We write with affirmation of the conclusion of Mayaux et al, based on recently completed work in Chicago that identified and consulted with a subgroup of extremely socially marginalized mothers with HIV with the goal of elucidating new strategies for eradication of mother-to-child transmission. In Chicago, public health data estimate that approximately 125 babies are born each year to mothers infected with HIV. At least 32 babies have been perinatally infected in Chicago since 1997.

We identified 15 mothers at high risk for vertical transmission who might not have been reached by current prevention strategies. These mothers knew their HIV status and gave birth to at least 2 children during the era of combination antiretroviral therapy and did not get appropriate perinatal treatment. They were identified through a Department of Children and Family Services (DCFS) database and were all women who had had children removed from their custody.

In addition to their involvement with child welfare services, these mothers shared common and overlapping institutional histories including contact with substance abuse and treatment programs, the mental health system, and the criminal justice system. The mothers we interviewed demonstrated characteristics of extreme social marginalization, as envisioned by Mayaux et al and as documented in other studies such as those discussed by Gilbert and Wright.³ Nearly all of the study participants were younger than age 35, infrequently if ever employed, never married, and living well below the U.S. poverty line. All but one of the mothers identified as African American. All reported teen pregnancies followed by dropping out of school; none had graduated from high school. Common life circumstances included unstable childhoods, lack of parental involvement, physical and sexual abuse, childhood involvement with DCFS, homelessness, and trading sex for money, drugs, and shelter. Psychological conditions including depression, denial of HIV status, and substance dependence constituted the norm. When asked about social support and friends, nearly every single woman reported that she had no friends.

On average, these mothers had given birth to ≥4 children (2-12 range), at least twice the average number of babies born to women in the general U.S. population, with a perinatal transmission rate after 1997 of approximately 15% (almost equal to the 17% rate reported by Mayaux et al). Compare this to a 4% transmission rate among all HIV-positive mothers nationally, and a <1% rate among mothers receiving HIV treatment in the United States. These mothers tell the stories of Mayaux's small subgroup of socially marginalized women who, in order to be reached, require special focus.

We need to understand these women further.⁴ As we continue our work to analyze the lessons learned from these mothers, one conclusion emerges as crystal clear. Traditional medical strategies aimed at prevention have already failed these women. Earlier detection must be reframed. The mothers we interviewed avoided prenatal care due to distrust in medical institutions and fear that their newborns would be reclaimed. They withheld disclosure at the time of delivery because the perceived risk of stigma and loss of privacy overwhelmed them. Wider and earlier testing of HIV will not suffice for earlier detection. Creating an environment in which HIV-positive mothers can disclose their status and feel cared for will allow them to avail themselves of treatments that they largely acknowledge to be of benefit.

Stacy Tessler Lindau, MD, MAPP

Kate Miller, MA

Jessica S. Jerome, PhD

Elizabeth Monk, LCSW

Patricia Garcia, MD, MPH

Mardge Cohen, MD

*Department of Obstetrics/Gynecology and Medicine,, University of Chicago, IL;, †AIDS Legal Council of Chicago, IL;, ‡MacLean Center for Clinical Medical Ethics,, University of Chicago, IL;, §Illinois Department of Children and Family Services, Chicago, IL;, ¶Northwestern University,, Feinberg School of Medicine, Chicago, IL; and, #Department of Medicine, Cook County Hospital,, Chicago, IL