HIV, Women everywhere have the right to informed consent

“Ability to reproduce plays a major role in women’s status, position in society”.

When in January 2008, staff from the International Community of Women living with HIV (ICW) initiated a series of focus group discussions with women living with HIV in Namibia about their experiences they were far from imagining what they would uncover. Of the 230 women interviewed, most reported some form of discrimination in health services and nearly 20% stated that they had been coerced or forced into sterilization.

Several women reported being required to sign consent forms while in severe pain during or after labour and not having been properly informed prior to sterilisation. “We were shocked by what we heard” said Jenifer Gatsi-Mallet of the ICW and Director of Namibia Women’s Health Network. “The ability to reproduce plays a major role in women’s status and position in society”.

The publication of the findings of the Namibian study brought renewed attention to coercive practices against women living with HIV and led to similar investigations in other countries and regions. Since 2008, cases of forced sterilisation have been reported, among others, in Chile, the Dominican Republic, Kenya, Mexico, South Africa, Venezuela and Zambia. A multi-country study conducted in Bangladesh, Cambodia, India, Indonesia, Nepal and Vietnam by the Asian Network of People living with HIV also found that “overall, 30% of women surveyed were encouraged to consider sterilisation because of their HIV-positive status”.

“There is no justification for the forced sterilisation of women living with HIV,” said Michel Sidibé, Executive Director of UNAIDS. “With access to antiretroviral therapy, women living with HIV can continue living healthy and productive lives and bear children who are free from HIV.”

30 years of increased awareness on HIV and of significant breakthroughs in HIV prevention, treatment and care have resulted in enormous progress in reducing new HIV infections and expanding access to HIV services. In the last two years alone, new infections in children have fallen by an estimated 24% as more pregnant women living with HIV have had access to antiretroviral therapy which reduces the risk of transmitting the virus to their child to below 5%.

There is no justification for the forced sterilisation of women living with HIV. With access to antiretroviral therapy, women living with HIV can continue living healthy and productive lives and bear children who are free from HIV.

“There is no justification for the forced sterilisation of women living with HIV. With access to antiretroviral therapy, women living with HIV can continue living healthy and productive lives and bear children who are free from HIV.” UNAIDS Executive Director Michel Sidibé

Despite this progress, stigma, discrimination and other human rights violations based on a person’s HIV status are still proving to be major barriers to scaling up the response.

Women who are living with HIV remain particularly vulnerable to human rights abuses, including unlawful breaches of confidentiality, denial of health services, compulsory HIV testing and in some cases forced sterilisation.

All too often, women living with HIV lack the means and support to challenge violation of their human rights. However in Namibia, with the help of the Legal Assistance Centre, a local human rights organisation, three women living with HIV took legal action for having been sterilised without their informed consent.

After four years of proceedings, the High Court of Namibia ruled on 30 July 2012 that medical practitioners have a “legal duty to obtain informed consent from a patient” and that consent obtained during labour does not represent informed consent. Although the Court found no link between the sterilisations and the women’s HIV status, its ruling clearly asserts the right of all individuals to informed consent to medical procedures including sterilisation. The case has attracted widespread global attention from the media, human rights groups and organisations working on women’s issues and HIV. The ruling has been hailed as a step forward in recognising the reproductive health rights of all women regardless of their HIV status.

“This is a landmark decision for women in Namibia and around the world,” said Mr Sidibé. “Countries must investigate and address all reports of forced sterilisation and other coerced practices against women, including women living with HIV. We will not reach our common goals for the AIDS response if people lose trust in the health care system because of fear of coercion.”

Information thanks to UNAIDS