Spotlight

Women living with HIV still wait for compensation years after allegedly being forcibly sterilised

By Nomfundo Xolo for Spotlight 27 November 2020

Zandile Mkhize (32) says at age 19, she was sterilised without her consent. Mkhize is among dozens of women whose testimonies prompted the Commission of Gender Commission to investigate.( Photo: Sandile Duma/Spotlight)

Nine months after the Commission on Gender Equality released a damning report containing testimonies from dozens of HIV-positive women about forced sterilisations allegedly performed on them in public health facilities, the health department has now moved to implement the commission’s recommendations. 

The investigation into the claims of forced sterilisations of HIV-positive women was started in 2017 and a draft report was sent to the health department last year. The Commission on Gender Equality (CGE) released its final report into the matter in February this year. 

But it’s a work in progress, health minister Zweli Mkhize told MPs in Parliament this week.

Director-general in the department of health, Dr Sandile Buthelezi, acknowledged to MPs that since the CGE concluded its investigation and handed the department the draft report, officials “failed to present the report for discussion and comment in the department. 

“They also neglected to make comments or raise any issues with the draft report before being made final.” Buthelezi said the department has since taken action against the officials.

Spotlight’s requests over the past month for more information on the department’s progress on the CGE’s recommendations have been ignored.

However, after members of parliament raised concerns and started asking questions, the DG and minister on Wednesday briefed a joint meeting of Parliament’s portfolio committees on health and women, children and persons with disabilities.

Buthelezi explained that after the department was given the names of the 18 women whose complaints were investigated by the CGE, Mkhize wrote to the relevant hospitals’ CEOs requesting them to make available the records and files of the complainants.

“For those 18 complainants,” Buthelezi said, “only nine patient files were located.” 

The patients’ names in three of the nine files were found in the hospital admission register, but the other six complainants could not be located through the register or patient files.

Mkhize has since formed a task team led by Prof Motshedisi Sebitloane from the University of KwaZulu-Natal. 

The team will, among other things, scrutinise the patients’ files, review their medical history, check if consent forms were signed and, where signed consent forms exist, determine whether it was medically reasonable and justified for those patients to be sterilised, Buthelezi said. 

The task team will also have to identify the clinicians and healthcare workers who took part in the procedures.

Since some patient files were missing, Mkhize asked the CGE on 13 November to send him the complainants’ affidavits, which the task team will study and report back to the minister.

On the face of it, it seems the task team will be duplicating some of the work already done by the CGE in its own investigation. The CGE has already studied affidavits, visited hospitals and attempted to access patient files.

However, according to Mkhize, the CGE investigations found nothing concrete. Although several cases were reported, the department was not privy to the affidavits, Mkhize said. 

“The CGE has done some investigation work with some officials in the department. There was quite a debate on whether there was adequate cooperation and so on, but when I looked at the matter afterwards, I got a sense this was a difficult investigation. 

“Firstly the allegations… referred to many years ago [and] many records are not available and lots of individuals who could have been in the service at that time may no longer be around as they have either retired, passed away or cannot remember all the details of what has happened because it was so long ago.”

Mkhize said the goal is to find and assess concrete evidence of the allegations and then process and channel it accordingly. 

“Let’s try to work on scientific proof so that we know what we are talking about,” he said.

Damning findings

The CGE’s report followed a complaint by Her Rights Initiative (HRI) and the International Community of Women Living with HIV (ICW) against the national and provincial health departments after reports emerged of women living with HIV being sterilised without their consent.

The report – based on an investigation involving 14 sworn affidavits (initially there were complaints from 48 women) and visits to 15 hospitals in Gauteng and KwaZulu-Natal – described the effects of the procedure on the womens’ mental and physical health, as well as the negative impact it has had on their relationships with their partners and families.

Among others, the CGE found that: “The complainants’ rights to dignity, bodily integrity and freedom and security over their bodies were violated… the complainants were subjected to cruel, torturous or inhuman and degrading treatment” and “the medical staff breached their duty of care to the patients”.

During this week’s briefing, DA MP Lindy Wilson labelled it as “the most unholy breach of any human’s right”. 

“That is a decision a person is entitled to make by themselves, and the fact that anybody could even think they can sterilise somebody without consent is incomprehensible.”

Mkhize stressed to MPs that forced sterilisation is not government policy.

‘Without consent’

Two women Spotlight spoke to say they were sterilised without their consent at public hospitals. Both women, Zandile Mkhize and Nomkhosi (not her real name), are now demanding justice.

“I used to cry when I thought about this or talked about it. Now I am just angry,” says Mkhize. 

“I am angry at the public health system that robbed me of my womanhood; the doctor who took a decision on my body. The value of my life was denied because of my [HIV] status.”

Mkhize, 32, has been living with HIV for over 16 years. She lives with her two children in a three-roomed house in Umlazi, KZN. Currently unemployed, she is an advocate for the rights of women living with HIV.

She told Spotlight she only learnt that her fallopian tubes had been tied after she gave birth to her second child in 2007. She was 19 at the time. 

Mkhize says she had a “vague” understanding of what sterilisation meant and assumed the procedure was reversible. She says she vaguely remembers the details of the consent form.

“I went for my 38-week check-up,” Mkhize recalls. “When the doctor saw in my medical records that I was HIV positive and pregnant, he was furious. 

“His tone suddenly changed and I could feel the judgment and disgust from his expressions… He turned to me and asked me if I wanted to be sterilised. I felt compelled to agree with the procedure.”

The next day, on 24 July 2007, she was due to give birth. Mkhize says as the nurses were preparing her for a natural birth, a doctor came in and told them to prepare her for a cesarean delivery instead.

“Two nurses gave me a form to sign. I didn’t know what I was signing. All that was [on] my mind was [a] safe birth and the labour pains that had intensified and the fear of a C-section operation. 

“Nobody explained to me at that point what I was signing,” Mkhize says.

“I feel socially rejected. Intimate relationships become complex because you have to disclose that you are HIV positive, and on top of it all, unable to have children. 

“The operation destroys not only your womanhood, but your entire life. Some women become outcasts and get called things like ‘barren’ by family members and society. 

“Their rights to obtain land in rural areas also diminish without children. The damage and the cost go beyond the operation.”  

She says she often sits and thinks about the children she would have loved to have had.

“The pain destroys me inside. Every time I talk about it, and at night, it comes back.

“I remember that I am incomplete… empty and half a woman. You have breasts, but who will you feed breastmilk to?” she asks.

Legal framework

Forced sterilisation is when an individual is sterilised without their knowledge, coerced into giving consent or consent is obtained based on false or incomplete information.

Section 12 (2) of the Constitution provides for the right to freedom and security, that includes bodily integrity and extends to the right to make decisions concerning reproduction and informed consent.

The Sterilisation Act gives effect to these rights as enshrined in the Constitution, and provides for instances where consent cannot be obtained due to, among others, impaired capacity of the patient. 

The act deems forced sterilisation a criminal offence. 

In addition, the National Health Act also promotes independent decision making and protects patients by, for example, requiring voluntary, informed and written consent before a sterilisation procedure.

The Sterilisation Act also limits the circumstances in which sterilisation may occur. It prohibits sterilisation of persons under the age of 18 and provides for consent that must be given freely and voluntarily, if the person giving it has:

  •   been given a clear explanation and adequate description of the proposed plan of the procedure; and consequences, risks and the reversible or irreversible nature of the sterilisation procedure;
  •   been given advice that the consent may be withdrawn any time before the treatment; and
  •   signed the prescribed consent form.

Another woman interviewed by Spotlight, Nomkhosi (not her real name), says the procedure ended her marriage. 

The 44-year-old unemployed mother of three says she was told the procedure was done to save her life. She was 31 at the time.

“The nurses told me that cutting my tubes was to save my life. And I agreed because I also saw some other women in the ward who were told the same thing. 

“I decided not to tell my husband because I fear the shame and judgment. He was always wanting more children and I couldn’t explain why it was not happening,” she says. 

“He complained about paying lobola and getting no children in return. In the end, I accepted this defeat and moved on. I have some family support and a strong will. 

“I now know there are many of us who went through this traumatic experience and we deserve some justice,” says Nomkhosi.

Legal and other recourse

The Women’s Legal Centre’s, Nasreen Solomons says the legal recourse available to women in such cases will depend on the outcome they wish to obtain. 

The centre represented HRI and ICW at the time the complaint to the CGE was lodged.

“Among the options they may have include a claim for damages (compensation); they may lodge a complaint directly with the hospital where the procedure took place and against the staff involved (if they have this information); they may lodge a complaint with the Health Ombud; they may lodge a complaint with the Health Professions Council of South Africa (HPCSA) and/or the South African Nursing Council; and they may continue to lodge complaints with the Commission for Gender Equality for further investigation,” Solomons explains.

But, says Solomons, according to provisions in the Prescription Act, claims for damages must be brought within three years of learning of the event that gave rise to the loss (in this case when the forced sterilisation occurred).

“Due to the fact that the 48 complainants (whose accounts formed part of the complaint to the CGE) had their claims prescribe, they are unable to bring claims for damages as a result. 

“The complaint therefore requests the intervention of the CGE to provide redress in these circumstances, where women can no longer bring a claim for damages,” says Solomons.

When asked about escalating the matter to the health ombud, minister Mkhize said: “The ombudsman will only become relevant when we have something concrete on whether there’s been a transgression. We will escalate to that level when it becomes necessary.”

CGE recommendations

Recommendations to the health department included scrutinising the informed consent forms provided to patients for signing in the cases to understand whether these, in their current formulation, provide for and protect the principle of informed consent. 

The department also had to report on the steps it intends taking to eradicate the practice of forced sterilisation and to engage with the complainants to find ways of providing redress.

Buthelezi this week told MPs the department has reviewed the consent form (for sterilisation) and experts have approved it. Translation into the official languages is already underway, he said. 

“One standard form will now be used across the country.”

The department is now developing a standard operating procedure that all healthcare workers in public health facilities must follow for sterilisation procedures.

The CGE also recommended that the department scrutinise the provisions of the Sterilisation Act and interrogate consent forms for sterilisations to check whether the provisions in the act provide for and protect the principle of informed consent.

“A legal opinion has been obtained advising on the appropriateness of the Sterilisation Act and provisions relating to consent,” Buthelezi said. 

“Both the National Health Act and the Sterilisation Act highlight the importance of consent prior to a procedure being performed.”

Another recommendation was that the department facilitate dialogue between it and the complainants for them to find ways of redress.

“The minister is finalising a team with an obstetrician, a psychologist, a social worker and a religious leader that will start the engagements. 

“They will offer emotional and spiritual counselling and also ensure that they establish what further remedy is required within the ambit of the law in terms of redress process,” Buthelezi said.

According to him, the commission will then present the department’s report as part of its petition to the South African Law Reform Commission (SALRC) for amendments to the legislation to ensure consent is properly obtained.

The CGE also made recommendations to the SA Nursing Council (SANC) as the statutory body for nurses, and the Health Professions Council of South Africa (HPCSA) to investigate the professional conduct and behaviour of the implicated healthcare practitioners.

HPCSA spokesperson, Priscilla Sekhonyana, responded to Spotlight’s questions saying only that the matter “is currently under investigation”. The SANC had not responded by the time of publication.

Why implementing recommendations are important

TB/HIV Care spokesperson, Alison Best, explains how policies and legislation sanctioning non-consensual treatments, including sterilisations violate the right to physical and mental integrity and may constitute torture and ill-treatment.

“Discrimination against people living with HIV by healthcare workers is particularly damaging. 

“It negates the work done by thousands of other healthcare workers to make health services non-judgmental and accessible to people living with HIV so that it is easy to access the life-saving care they need and that will help curb new HIV infections,” says Best.

“It also negates the work of healthcare workers who support HIV positive and HIV negative mothers to give birth to healthy babies, or otherwise support their sexual and reproductive health needs. 

“For these reasons, and most importantly, because it violates the rights of people living with HIV… discrimination within the health system and by health workers against people living with HIV is unacceptable,” adds Best.

The way forward

Mandla Shabangu, provincial secretary of the nurse’s union, DENOSA, in KZN, says the recommendations in the report relating to nurses’ conduct and ethical behaviour will need a “thorough, fair process”.

“There is no evidence that any of the nurses implicated in the report acted unethically. In cases of medical procedures, such as sterilisations, a medical doctor would have to be in charge. 

“Nurses simply follow instructions and assist the doctors. The circumstances of the cases reported in the report will have to be thoroughly investigated because the nurses implicated might have been carrying out instructions with good intentions. 

“We have [received no] reports from the regulator board (SANC) to further clarify if there is any evidence that nurses are involved in any misconduct. 

“We do however condemn the alleged cases and encourage that justice be served accordingly.”

When Spotlight approached the CGE for comment last week, Baloyi said the commission is “satisfied with the progress of investigation”. 

“We’ve submitted all the evidence and support for the investigation. Now the onus is [on] the department of health to implement the recommendations… but we are confident we will have answers in due time.”

Despite MPs this week insisting on timeframes for the implementation process, none were given. The department, however, undertook to give updates on any significant progress.

When Spotlight put the department’s new plans to Nomkhosi, she said: “Although the progress is slow, I am hopeful that one day our voices and those that have died without justice will not have died in vain. 

“We feel severely punished for having a disease we did not ask for.”

But not everyone is happy with the progress. 

Promise Mthembu, co-founder of Her Rights Initiative, the organisation that lodged the complaints with the CGE, says the recommendations and implementation process worry them.

“The department of health is using delaying tactics… they are not taking us seriously because it has been 12 years since we have been advocating for justice to prevail. 

“Some of our sisters have died in this struggle, but we will not stop. It’s been nine months since the report was released, yet the department has dragged their feet and taken us from pillar to post with no concrete signs of justice,” Mthembu said. 

“We are not happy with the response presented to parliament. It undermines us.” DM/MC

Note: This article has been updated. An earlier version incorrectly
attributed Nasreen Solomons’s quotes to Seehaam Samaai (both of the
Women’s Legal Centre). We apologise for the error.

This article was produced by Spotlight – health journalism in the public interest. Sign up for our newsletter.

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