Grace (not her real name) 53 years of age from Meru (Northeastern Kenya) tested HIV positive in 2004 after losing her third child at five months. “I was married for 23 years. My husband knew he was HIV positive but never disclosed to me that he was sick”, Grace told The Lancet HIV.
None of Grace’s babies survived to 1 year. Her first died at 4 months old, her second at 3 months, and her third died at 5 months. Only her third child was delivered in hospital—her husband suggested that she should go to see if the baby would survive. “During my third pregnancy my husband had warned me that this was the last chance I had, and if the baby died he would not let me get another baby”, she said.
Grace was admitted to Tigania District Hospital in Meru for delivery in July 2003. Her husband had not attended her previous two deliveries but was with her throughout on this occasion. “At the hospital, the nurse examined me and then advised us that I was to go to the theatre for a caesarean section because I had developed complications during labour.”
The baby was delivered safely and he was healthy. However, Grace noticed that she had two scars and was in a lot of pain. “I asked my husband why I had the two scars and he said that’s how the procedure is done. Being my first time in hospital for a caesarean delivery, I believed him.” 3 months[A1] after delivery, the baby started getting sick and at 5 months he died. Her husband accused her of witchcraft as the reason their children have been dying after birth.
“Months later my husband married a second wife and our relationship started getting abusive to the point that I had to disclose to my family”, she said. Having been ill for some time, during this period, Grace began to get sicker. “In 2004 after a year losing my child, my sister who was working in Nairobi took me for checkup at African Medical and Research
Foundation (AMREF). I underwent various tests and the doctor disclosed to me that I was HIV positive.” The news did not shock her husband, she said—it was like he expected it. Grace was then put on antiretroviral therapy (ART). 2 years later, Grace says she went back to AMREF and talkedto the doctor of a possibility of her getting a baby again to salvage her marriage. “I took some tests and my CD4 count was fine. So the doctor gave me a go ahead to get a baby.
After a year of no success, I went back to see the doctor to find out what the problem was. He sent me for a scan and other tests”, said Grace. “The scan revealed that I had a tubal ligation. I didn’t know what that meant but then the doctor explained that I would never have a baby again.”
The doctor at AMREF advised Grace to go back to the hospital where she delivered her baby to ask why the procedure was done. “At the hospital the nurse told that they were under strict instructions from my husband who requested for the procedure on my behalf to stop me from getting babies. They even showed me where he had signed.” Jonathan Monda, a medical doctor in Nairobi[A2] explains tubal ligation is a birth control option that is permanent and can be done after or during birth.
The procedure involves cutting of the fallopian tubes, tied or permanently blocked to prevent pregnancy. Women may choose sterilisation either through tubal ligation or hysterectomy as a family planning option. However, forced sterilisation is when a woman is coerced to consent for it or it is done without her knowledge.
In 2012, a report by Africa Gender and Media Initiative (GEM; a non-profit organisation that aims to advance gender equality through research and action on women’s human rights especially the marginalized women, such as those living with HIV) documented stories of up to 40 women with HIV in Kenya who had forced sterilisation in private and public hospitals. The report, Robbed of Choices, indicated that the women are struggling to live with the irreversible condition for the rest of their lives.
When Grace went back to the delivery hospital with GEM officials to request her file showing that her husband gave consent for the procedure, but the hospital declined to give her the file.
So there was no evidence to sue the hospital and her husband. “After joining GEMS, I was counselled and I met other women who underwent the same challenge as me. So I am getting over it slowly.” Grace now lives and is working in Kibera in Nairobi as a volunteer for AMREF HIV programme to educate on why they should go for HIV testing and the importance of adherence to ART for those who test positive.
Reports on sterilisation of HIV positive women have been documented in Chile, Dominican Republic, Mexico, Namibia, South Africa, and Venezuela where women were forced or coerced to undergo the procedure using incentives, lack of informed consent, and force.
According to the UN, forced or coerced sterilisation is a gross violation of human rights and medical ethics. The Kenya Legal and Ethical Issues Network on HIV (KELIN) and GEM, together with five women living with HIV who were sterilised without their consent filed a petition in the
Kenyan High Court in 2014 seeking a determination on the constitutionality and legality of the women’s forced and coerced sterilisation.
“The five women are those that had supportive evidence from hospitals where the procedure was done. They were sterilised under various circumstances including threats by the hospitals to withhold food portions or baby formula milk given to them, as the only option for their family planning, threats and misinformation that it was endangering their lives and that of their babies”, said Allan Maleche the advocate for the petitioners and Executive Director of KELIN.
The respondent to the case are the hospitals where the procedure took place—Pumwani Maternity Hospital, EastLeigh Clinic, and Marura Maternity and Nursing Home in Nairobi.
“From the court we seek that the women be compensated for the damages caused to their bodies, the Ministry of Health to put in place reproductive health rights guidelines and policies specifically on sterilization and access to information for consent”, said Maleche. The case has been delayed for a long time because that the judges are too few to determine the case, and occasionally the judges handling the case are changed.[A3] Gladys Kiio of GEM told The Lancet HIV that “some of the women were coerced into signing the consent by being guaranteed to be given antiretrovirals because the same hospitals and nurses were the ones giving them the drugs. So if the women refused then they would not get their pills.”
The worst thing, according to Kiio, was that in much of African culture, having a child is glorified and because these women cannot have children, most of them have been divorced. Some of the women have also developed health challenges such as over bleeding because of the forced procedures.
In 2016, South Africa’s Commission for Gender Equality released a report showing that up to 48 HIV-positive women were forced or coerced into sterilisation after giving birth in 15 public hospitals in South the country between 2002 and 20015.
Lily (not her real name) who is HIV positive was one of the affected women. She told The Lancet HIV that in 2008 when she was admitted at Nkandla hospital in KwaZulu Natal, South Africa to deliver her second child, the nurse recommended her to undergo caesarean section to prevent
HIV from infecting her baby.
“My first baby is HIV negative and so I believed the nurse and agreed to the idea”, said Lily. “As I was being prepared to go to theatre, a doctor came and informed me that I was to be sterilised, and so I was required to sign a consent form. While still confused and internalising the information, he gave me the form to sign.” Lily said that she signed the form but didn’t know even what was written on it and what she was signing for.
After surgery Lily says she asked the nurse in charge what the forms she signed were for and the nurse explained that as an HIV patient it was unfortunate that she still wanted to have more babies; so that problem had been solved. Keketso Maema, Chief Executive Officer of the Commission for Gender Equality[A4], said the procedures were inhumane and against the human rights of the women.
“Some of the women we interviewed told us they were given the forms while in extreme labour pains. This raises a lot of questions on the ethics of the medics in these hospitals. The questions is not about the consents obtained but rather how the consents were obtained”, Maema told The Lancet HIV. Since the release of the report in South Africa, Maema says it has been presented to the parliamentary committee on health. Among the commission’s recommendations are for the South African Law Reform
Commission to amend legislation that ensures consent is obtained and counselling is done before the consent; where a patient agrees to sterilisation, they must be given a cooling-off period to appreciate the risks and consequences of the procedure.
The commission also wants the Health Professions Council of South Africa (Health Professions Council of South Africa) and the South African Nursing Council be investigated on their professional conduct and behaviour for action to be taken where any of them is implicated. Although South Africa passed a law in 1998 prohibiting sterilisation without informed consent, enforcement is sorely lacking. “Physicians performing forced sterilisations are violating not only internationally recognized human rights, but also their duties as medical professionals”, said Tobin Klusty, a coauthor of a 2015 study of HIV-positive women in South Africa, Namibia, and Chile sterilised without their knowledge or compelled to accept the procedure to receive food or necessary medical treatment.
In 2014, the Namibian Supreme Court upheld the High Court’s ruling that medical personnel at public hospitals had sterilised three HIV-positive women without their consent and that “individual autonomy and self-determination are the overriding principles towards which our jurisprudence should move in this area of the law”, and declared that “these principles require that in deciding whether or not to undergo an elective procedure, the patient must have the final word”.
Maleche advises that governments must enact and enforce laws that prohibit sterilisation without consent. “Stringent measures like suspension of the licenses of the health and medical workers implicated to have performed sterilisation without informed consent of the women.”