HIV-positive persons in all segments of society face intense marginalization, but the effect is immensely compounded for women and expecting mothers. In Mexico, El Salvador, Honduras, and Nicaragua, where at least 57,000 women are living with HIV, the stigmatization is so great that many are denied basic reproductive rights, says Harvard University’s Tamil Kendall in this week’s podcast, from the Maternal Health Initiative.

Following community-based surveys on reproductive rights violations in these countries, Kendall noticed a clear trend of withheld care and abuse at the hands of health care workers for HIV-positive women, with some survey participants recounting harrowing ordeals.

“There’s fear about the reactions women get [from health care providers],” Kendall said, and the stories of those surveyed show that it is, “a reasonable fear.” Despite medicine and techniques that can make mother-to-child transmission extremely unlikely, HIV-positive women were not informed, denied access to contraceptives, and told they should not become pregnant. Some were even operated on unwittingly. “Some women don’t even know they’ve been sterilized until they try to get pregnant and then someone looks in their medical records,” Kendall said. She recounted one case of a woman being made to make her mark on a consent form while still recovering from anesthesia after a caesarian section.

Misinformation on the part of health care providers is part of the problem. “Many times, providers are operating under false assumptions about the risk of transmission, which is added to already existing discrimination and stigma and produces these kinds of problems,” Kendall said. “Only 45 percent of women who had an HIV negative partner had received information about how to conceive a child while reducing risks to that partner.”

The result is a wholly inadequate health care experience: “Under half of the women [surveyed] considered that they had received comprehensive reproductive health services, and in fact 41 percent said that they have been discriminated against by health care workers specifically when seeking reproductive services.”

With such a high level of stigmatization and discrimination, change may be a slow process, but governments need to take the first step, she said. “In order to protect reproductive rights as human rights…[states] need to implement rights-based training for HIV providers around reproductive health, and to disseminate cutting-edge knowledge about treatment as prevention and about the low vertical rates of HIV transmission and sexual transmission.“

Tamil Kendall spoke at the Wilson Center on January 13. Download her slides to follow along. Note: Some statistics have been updated since the initial presentation.