KAMPALA, UGANDA — Five years after her rights were allegedly violated by a trusted custodian of her health, Harriet, an HIV-positive Ugandan who requested her real name not be used, still cannot bring herself to go anywhere near the hospital where the abuse took place. She tries not to think about the betrayal, and since finding out the shocking truth, has not come face-to-face with the doctor responsible for it. But the doctor’s image will be forever ingrained in Harriet’s memory.
The 33-year-old discovered that she had been sterilized six months after the fact — when she returned to the facility where she’d given birth by caesarean and sought treatment for bleeding.
“The midwife told me briefly that I’d undergone tubal ligation after I’d given birth because I already had five kids and I was HIV-positive,” Harriet told ThinkProgress. “She explained to me that I’d never be able to give birth again. Then she left. I really felt angry, because they did it without my consent.”
Sadly, Harriet’s story is not unique.
A 2013 report by the National Forum of People Living with HIV/AIDS Networks in Uganda (NAFOPHANU) found that at least 11 percent of women living with HIV/AIDS were coerced by a health care worker. A 2015 report focusing on such coercion from Uganda-based NGO International Community of Women Living with HIV Eastern Africa (ICWEA) revealed that forced sterilization and coercion — which includes women being given money and misinformation or being intimidated by a health worker — continues in the country.
The study, which looked at HIV-positive women between 15 and 49 years old in nine districts across the country, found that 72 of the total 744 women studied reported having undergone forced and coerced sterilization, and 20 of them were pressured into sterilization in clinical settings, like hospitals. The study also found that three young women were forced into abortions, often unsafe in the country, by their families.
“I think there might be a lot more,” Dorothy Namutamba, ICWEA’s Programmes Manager, told ThinkProgress, of the number of women who are victims of forced sterilization.
“There’s a level of silence around this issue,” she said, explaining that many victims do not tell their families out of the belief among many Ugandans that HIV-positive women should not bear children, as well as the stigma against those who cannot have them.
One mother of two said she was told, ‘This is the last time you’re coming to this theater, I think we should just cut your tubes. Two [children] is enough.’
Nearly all cases of forced sterilizations in the study (over 95 percent) occurred when women underwent cesareans, like Harriet.
“One mother of two said she was told, ‘This is the last time you’re coming to this theater, I think we should just cut your tubes. Two [children] is enough,’” said Namutamba. “It’s shocking that such decisions are taken when a woman is so vulnerable.”
Other alarming cases uncovered by ICWEA include a woman who allegedly had her uterus removed by health workers without her consent and women whose family members had colluded with doctors and consented to sterilization on their behalf.
The effects of the violations on the women range from psycho-social — husbands walking out on women and their children — to diminished desire for sex, and can also lead to financial implications when abandoned women are left as breadwinners or jobless due to sickness.
Like Harriet, many women only discovered they had undergone sterilization after failing to conceive years later.
“The fact that there’s no solution — it is so painful for them,” said Namutamba, explaining that alternate birth methods like in vitro fertilization (IVF) are “damn expensive” in Uganda. “Some have personally asked me ‘how do I untie my tubes?’”
Once lauded as a model in tackling HIV/AIDS for other African countries, HIV prevalence increased in Uganda from 6.4 per cent in 2004 to 7.3 per cent in 2012, according to the 2011 Uganda AIDS Indicator Survey. Women between 15 and 24 years old are more likely to be HIV-positive than men, with prevalence rates for them at 4.2 percent, compared to 2.4 percent for their male counterparts.
That rise has likely exacerbated the issue of forced sterilization.
In neighboring Kenya, four HIV-positive women who were forcibly sterilized have sued the government, as well as the NGOs Médecins Sans Frontières (MSF) and Marie Stopes International, who they claim referred them to state hospitals where the sterilizations occurred, between 2005 and 2010. Some women were allegedly told that if they did not consent to the operations, they would not qualify for food portions and milk formula for their children. The petition was in court last month and has been adjourned until June. A separate second petition, involving a woman who has sued a maternity hospital after undergoing bilateral tubal ligation without her informed consent a decade ago, was due back in court on Tuesday. In Uganda, the “number one reason for the sterilizations is poor attitudes of health workers towards reproductive health choices of women living with HIV,” said Namutamba.
Many Ugandan health workers deny that this forced sterilization is happening.
“We don’t say ‘Don’t become pregnant,’” Ugandan Health Minister Elioda Tumwesigye told ThinkProgress. ”If you become pregnant we give you treatment,” he said, adding the government’s policy was “clear” in there being no family planning discrimination against women living with HIV/AIDS.
But perhaps the government policy isn’t clear enough — as seen with the case of Harriet.
Harriet’s mechanic husband, with whom she had four children, the first when she was 14 years old, passed away from HIV/AIDS a few years later. With a family to provide for, and her parents disowning her over her HIV status, a friend and her sister who were doing commercial sex work suggested the widow do the same. Harriet decided she had “no alternative.”
“Sometimes I would get clients who wanted unprotected sex and those ones pay a lot of money, so I would go without condoms,” she said.
When she became pregnant to a client with her fifth child in 2007, Harriet went for antenatal treatment and discovered she was HIV-positive.
She received counseling by the hospital over her status, along with support from ICWEA, but did not receive proper information from the hospital about family planning. “She was entitled to proper options and information around family planning that are available, and should have been able to make an informed choice herself,” said Namutamba.
Even if they’d said sorry it wouldn’t have changed anything.
Today, Harriet still hasn’t received an apology from the hospital. “Even if they’d said sorry it wouldn’t have changed anything,” she said.
Nyasha Chingore-Munazvo, a Johannesburg lawyer who worked on the Namibia court case, believes that victory set a “precedent” for other African countries, even though the judgment didn’t find that the women were sterilized because of their HIV status.
Tabitha Griffiths Saoyo, the Programme Manager for Sexual and Reproductive Health and Rights at Kenya Ethical and Legal Issues Network (KELIN) who launched the two Kenyan petitions, says the NGO expects verdicts in the cases by the end of the year. But she thinks no matter the verdict, the advocacy within court has “broken the silence on the ability of HIV-positive women having children and equally living meaningful lives without the stigma that is often attached.”
In Uganda funding for legal action is a problem and may be some time off, but there’s one thing Harriet wants in the meantime.
“I want other people to know this is going on,” she said.