There is life after HIV, there is love. UNAIDS.


HIV and Reproductive Health

In 2008 when I started working on a qualitative research project on the challenges of living with HIV in KwaZulu-Natal, South Africa, I became increasingly aware that people living with HIV (PLH) were actively discouraged from having children. In some respects, this was not surprising since there is a great deal of concern about transmitting the virus to the child and to an uninfected partner. What shocked me most was when a potential research partner told me that the chair of their ethics committee believed that an HIV-positive woman who became pregnant ought to be incarcerated. These were people working with PLH, if they felt this way how much worse would it be in the wider community? Over the past decade conducting research on HIV and reproductive issues, I have heard stories from pregnant HIV-infected women in South Africa, Malawi, and Uganda about their experiences of verbal and physical abuse by medical professionals. It is no surprise that women avoid coming in for care for fear of abuse.

In KwaZulu-Natal I interviewed people in HIV support groups. An HIV-positive woman who provided guidance to the groups talked about members’ concerns regarding death and leaving children behind. She explained,

“We encourage groups to discuss death and loss. We help members plan when and how to tell their children they (the parent) have HIV. We help them make memory boxes so they can leave special memories for their children in case of their death. Our work helps the members deal with their emotions and learn to accept their HIV status; to learn to live positively.”

In interviews with men in these groups, I was struck by their poignant stories related to the challenges they faced in trying to sustain relationships with their children. They talked about the cultural preferencing of a mother’s rights to her child when the couple had not married. Fathers had to find alternate ways to ensure access to their children. Furthermore, they also contend with social stereotypes that cast men as perpetrators of sexual violence which they told me contributed to a lack of faith in their ability to raise their children, especially their girl children.

Men and women living with HIV want to have children. It makes them feel they are normal and that they have a future to look forward to. Furthermore, I discovered that PLH experience social pressure from partners and family members to have children. Given the stigma associated with having HIV, individuals were very selective about disclosing their status. Since they often had not disclosed their HIV status to everyone, they were often unable to explain their fears of transmitting the virus to their partner and child. Nevertheless, some told me that they chose to take the risk rather than reveal their HIV status. They told me, “We’ll leave it up to God.”

Over the past decade I have collaborated with researchers and clinicians to ensure that PLH can conceive children while reducing the risk of HIV transmission. We recently completed a successful trial to assist couples in Uganda to safely conceive. Colleagues are engaged in similar trials in South Africa. However, resistance to ensuring the reproductive rights of men and women living with HIV remains a challenge. Couples affected by HIV are still being encouraged to avoid having children, pregnant HIV-positive women are still experiencing abuse by health care providers, and are often encouraged, if not coerced, into having an abortion. Universal safer conception care for PLH is still unavailable anywhere in the world.