Living and loving with HIV: Are young Zimbabweans unprepared?

BULAWAYO, Zimbabwe — Susan Moyo was expected to die before her fifth birthday, but she is one of the few to have defied a prognosis of HIV in the 90s. Now she is 24 and healthy. However, after overcoming the initial odds of being born with the virus and the sickness it often brought, Moyo is grappling with a new challenge: finding love. Moyo — whose name has been changed to protect her privacy — said transparency is one of the keys to navigating romantic relationships. “The most painful response upon disclosing your status in an intimate relationship is having someone stay out of pity or not wanting to hurt you. You can feel that they are now distant and that is very hurtful, and it gives a sense of false hope," she said. Experts say the country failed to adequately prepare Moyo’s generation for life with HIV as it grappled with high HIV-related child mortality rates at the onset of the pandemic. “I would say there was a level of unpreparedness on our part owing to the country's history of the high HIV- and AIDS-related infant and child mortality rates, as to what then, when the medication worked as it was intended to,” said Cinderella Mushambi, the programs officer of Bulawayo-based Million Memory Project Zimbabwe, or MMPZ — which works to make sure that every child with HIV in Zimbabwe lives a normal life. Zimbabwe recorded its first HIV case in 1985 and the lack of access to drugs to prevent vertical transmission or transmission of HIV from an infected mother to her unborn child over the past several decades meant that a number of children in Zimbabwe were born HIV-positive. The country introduced antiretroviral therapy, or ARVs, in the public sector in 2004. Prevention of mother-to-child transmission was piloted in 1999 — Moyo’s year of birth — before it became a national program in 2002. That year the national HIV prevalence rate averaged 20%, but is now down to under 13%, according to government data. According to the World Bank, prevention of mother-to-child transmission, or PMTCT, coverage stood at 87% in 2021. Pregnant women now receive services for PMTCT during delivery and during breastfeeding, as part of their antenatal health care and support. Ill-prepared and uninformed Mushambi said the country did not adequately support the generation of HIV-positive children born before these improvements in HIV prevention. She said those children who were lucky enough to survive an HIV prognosis were not mainstreamed into the learning environment, and community setting and were not prepared to navigate their romantic relationships and life with HIV. Her organization, MMPZ, has over the years facilitated support groups and boot camps where HIV-positive young people can talk about treatment literacy, adherence to medication, self-awareness, acceptance, disclosure, and of course love, dating, and relationships. These sessions have made Moyo more self-aware and accepting of herself, and willing to disclose her status. “This, however, is not an easy process as it calls for constant learning and unlearning,” she said. Linda Hwenga, an advocacy and communications officer at UNAIDS in Harare, said young people born with HIV are navigating multiple and intersecting challenges — those that all young people face and those that youths who are living with the virus face. UNAIDS supports youth-led organizations and networks for young people living with the virus and tries to empower them to advocate for their needs and increase knowledge about the virus. “Some of them haven't accepted the condition because this was a vertical transmission,” she said. This is especially difficult when they are told that “HIV is transmitted through sexual encounters, and now you have a young person who is HIV positive, but some of them are not sexually active.” Some parents and guardians do not disclose the status of their children early enough. They make them take ARVs but say the medicine is for other conditions such as heart problems, asthma, and others. Hwenga said when these children later discover their status, some may feel betrayed and refuse to take the medication. This was the case with Luckmore Pamhidzai, 23, who discovered his status at age 11 after suffering from tuberculosis while at his rural home in Mount Darwin, north of Harare. “I was confused because I thought it was for adults only, so I thought I was the only child living with HIV,” he told Devex. “The only mode of transmission I knew at that time was unprotected sex with an infected person. I have never had sex with anyone. So where did I get HIV? Am I going to live for the next 10 years?” He pointed out that the most difficult part about an HIV diagnosis was accepting one's status, yet this was a very important step because it determines how people are going to take care of themselves. “I lost hope. I stopped taking my treatment, then my health deteriorated,” he recalled. Finding hope and love Pamhidzai said he faced a lot of challenges trying to form intimate relationships, assuming no one would love him because of his HIV status. He, too, had conflicting thoughts about whether he should disclose his status. At one point, he told himself that he was not going to find love and get married. Things took a turn for the better when a UNAIDS-supported NGO called Zvandiri — derived from a vernacular Shona language meaning “How I am” — introduced him to a support group called community adolescents treatment supporters, or CATS. It was the first time he connected with peers who were also HIV-positive. This group helps members stick to treatment and provides them with socio-psycho support. Pamhidzai said the group has equipped him with skills to disclose his status to a partner. “I was rejected on multiple occasions simply because of my status and faced stigma and discrimination from family members and friends of the person I was dating. Through the support I was receiving from the CATS I did not lose hope,” he said. In 2019, he publicly declared his status and three years later, he got married. Moyo and Pamhidzai were born during gaps in HIV science, as ARVs together with PMTCT programs were introduced in the early 2000s, said Dr. Nkazimulo Tshuma. But even then, the screening criteria were tight and PMTCT was not mandatory. Tshuma, the medical director of the Centre for Excellence at Mpilo Central Hospital in Bulawayo, which is supported by the American NGO AIDS Healthcare Foundation, said this science gap is why Zimbabwe is home to a high number of young people living with HIV. "There were not enough ARVs, [and] the information was not there on the benefits of testing and treating," she said.