(CNN) — In 2013, Jenipher Mukite’s whole life changed in an instant.
It was her mother’s answer to a question both she and her siblings had feared asking that altered her present, past and future in one sweep.
While their mother was bedridden, unable to move or eat yet refusing to go to the hospital to seek medical help, they finally mustered the courage to ask.
“Do you have HIV?”
Worse still for them, she had been living with the virus since before Jenipher, then 18, and her brother and sister, then 14 and 10, were born — and had not been on treatment.
Her mother confessed that the drugs had been too big and difficult for her to consume.
My mother had kept it a secret, Mukite said through an interpreter. Soon, their whole village in the Bugiri district of Eastern Uganda gossiped about their mother and the fact that her whole family must also be infected.
She said it was a challenging time.
When a pregnant woman is HIV-positive and not taking antiretroviral drugs, she has a 15% to 45% chance of passing the virus on to her baby, according to the World Health Organization. With treatment throughout pregnancy, delivery and breastfeeding, this risk falls below 5%.
Most countries, including Uganda, readily offer HIV testing when women come in for pregnancy checkups and offer treatment on-site for those found to be infected. But this was not the case when Mukite was born.
After disclosing her HIV status, Mukite’s mother was kicked out of their home by their father, but with nowhere to go and no one to care for her, returned home and died a few weeks later.
All three children and their father soon found out that they too were HIV-positive.
With the death of her mother, Mukite’s main confidante and carer, everything changed.
She said she wanted to commit suicide. She knew she had no one who would take care of her anymore.
Punishment without a crime
Their father saw no benefit in caring for girls with HIV, according to Mukite.
Mukite was soon shipped off to his mother’s home, where she lasted just over a year facing hatred and abuse, largely aimed toward her deceased mother and the fact she had kept the virus a secret. Mukite says she was not given fees to go to school and not provided with the same meals as others.
Her younger sister had stayed home but soon ran away to stay with an aunt, she said.
Their brother remained home, Mukite saw when she returned there over a year later. She also found that her father had remarried.
She had a new mom, or at least she had hoped so, but Mukite explained that the change came with no maternal care. Instead, the lack of education and food continued, and she was required to do most of the housework.
In late 2016, her father began arguing that it was time for Mukite to get married. In fact, it was possibly too late, as in his eyes, the 21-year-old was old, she said.
He feared that she would never get married and bear children, according to Mukite.
“This is so common, especially with adolescent girls living with HIV,” said Allen Kyendikuwa, program lead for the Uganda Youth Coalition on Adolescent Sexual Reproductive Health and HIV. “Many girls are told to drop out of school and go get married.”
Mukite turned to a project within this organization for advice.
People say you are old at 20 and need to have a child, Kyendikuwa added, especially when you are HIV-positive.
Kyendikuwa further highlighted that grooms’ families are often required to give money when their sons get married, but she more strongly believes it’s a matter of passing over responsibility.
“When you get married, you are no longer under (your family’s) care,” Kyendikuwa said. “It happens a lot.”
International AIDS Society President Linda-Gail Bekker adds that “there is much more marriage (in general) in East and Central Africa” compared with southern Africa. Being in a relationship could “reduce stigma in some way, by being seen to be in a stable relationship.”
Rather than giving in to this pressure, Mukite sought the help of a local social worker, who put her in touch with a pastor whom she now lives with. She is studying hairdressing at the New Life Skills Center in Bulesa village in her home district of Bugiri and has been on antiretroviral treatment since she learned of her infection.
She wants a husband and child but first wants to finish her studies.
“We need a generation that is more independent and educated,” Kyendikuwa said. In 2015, African youth accounted for 19% of the total global population in that age group. “If you want to make a change, this is the generation you should target.”
Disproportionate rates in young women and girls
In sub-Saharan Africa, young women ages 15 to 24 are at more than twice the risk of having HIV than males the same age, according to a recent study.
Globally, 65% of HIV infections among 10- to 24-year-olds are in females; in sub-Saharan Africa, this number goes up to 75%. Every day, 1,000 adolescent girls and young women are infected in this region, according to the US President’s Emergency Plan For AIDS Relief.
“The epidemic puts young women and girls at a particular disadvantage,” Bekker said. “Girls are at risk earlier … but you can’t ignore men.”
There are many routes of infection, with heterosexual transmission being the primary mode in sub-Saharan Africa, according to Bekker.
That’s true for young women in Uganda for a variety of social reasons, including exposure to sex with older men at a younger age, Bekker said. But Infection from mother to child also remains a risk.
An estimated 6% of women receiving prenatal care in Uganda are infected with HIV, according to the Strengthening Uganda’s Systems for Treating AIDS Nationally project. Through programs to prevent transmission to children, UNAIDS data show that transmission rates to children had fallen to 2.9% in 2015 — down from 29% in 2009.
Bekker believes the priority to end HIV in young women and girls is to prevent new infections: by targeting both girls and men.
“This continent has a very patriarchal approach,” she said. Efforts need to be made to understand men and the gender norms and to impact males in society, she said.
When it comes to young women, “they need self-initiated protection” through education and awareness but also products, such as contraceptive vaginal rings that also release antiretroviral drugs.
The International HIV/AIDS Alliance is now tapping into women’s willingness to speak out using social media and giving them a platform with a focus on HIV. Its project, #ReadytoDecide, aims to highlight links between gender inequality and HIV.
“It’s an opportune time,” alliance Executive Director Christine Stegling said. “Gender-based violence is a societal norm and needs to be addressed.”
Stegling also believes that after decades of focusing on finding and treating people with HIV, there needs to be focus on prevention. Girls should have better choices about their bodies.
“We see a time for young people to speak up.”