“He said you are HIV-positive you to go to Katatura hospital to get your positive test results. I went to that room, I knocked; they said I need a medical passport, I went and got a medical passport, the man is talk, talk, talk. He said, ‘Do you know what HIV is?’ I said, ‘Yes, it kills,’ and he said, ‘Well you have HIV.’ I walked out and threw away the card.” – woman living with HIV, Namibia
We often assume that hospitals are healing places, where people living with HIV receive medical services in a safe facility, from trustworthy health practitioners. While this can be the case, a human rights investigation conducted by the Namibia Women’s Health Network, Harvard Law School’s Human Rights Program, and Northeastern University School of Law found that women living with HIV are often mistreated in hospital settings. This report will be launched at the AIDS conference this week in Washington DC. Key issues that arose from the investigation include:
Stigma and discrimination
Women living with HIV are singled out, segregated, and discriminated against throughout their pregnancies, including during their labour. Along with bearing the emotional weight of such conduct, pregnant women who have HIV also find themselves at increased (yet avoidable) health risks because they are not given adequate attention in hospitals. In Namibia, the need to address such stigma and discrimination has been acknowledged in successive versions of its National Policy on HIV/AIDS.
HIV testing without informed consent or confidentiality
Verifying a 2008 study conducted by the International Community of Women Living with HIV and the Namibia Women’s Health Network, our investigations demonstrate that women living with HIV undergo HIV tests without their consent. Learning their HIV status comes as a surprise. Further, interviewees told us of impediments to access to clear, accurate and detailed information on essential issues related to HIV testing such as: the importance of knowing their HIV status; the possible test results and their consequences; the available treatment for those who have tested positive, including access to prevention of vertical transmission programmes; and their right to informed consent to (or refusal of) testing and treatment.
Amplifying the findings of the 2008 study, our investigation reveals additional cases of sterilization. Women living with HIV reported that medical personnel failed to obtain consent; they failed to communicate with patients due to language barriers. Medical professionals obtained consent under duress and/or based on misinformation and they demanded consent to sterilization in order for female patients to access other necessary services including abortion and child delivery. Medical professionals demanded and/or obtained consent for sterilization without providing information about sterilization or other contraceptive options. Additionally, they recorded misinformation on medical passports and denied women access to medical records. The majority of reported cases of forced and coerced sterilization involve the failure of medical personnel to provide women living with HIV with a description of the nature of the sterilization procedure, its effects, consequences, and risks. Discrimination against women living with HIV in relation to childbirth also surfaces in limiting their access to a family planning method of their choice, such as by pressuring them to use Depo-Provera, an injectable hormonal contraceptive.
Making visible the ongoing mistreatment of HIV positive women has broad implications for HIV projects and programs that assume that hospitals are safe places for implementing women-focused projects. Awareness of wrong doing in hospitals should raise questions about how HIV treatment programmes are being implemented. For example, “Prevention of Mother to Child Transmission” (PMTCT) programmes offer testing and treatment during pregnancy and often afterwards. It is not unusual to hear PMTCT funders and implementers lament the lack of uptake in PMTCT programs. Mistreatment and discrimination of women living with HIV in these clinical settings may provide a partial explanation for the disconnect between the provision of services and the lack of responsiveness amongst women.
AIDS 2012 takes place in the 31st year of the HIV epidemic. While there has been beautiful progress, such as the huge advances in treatment and the possibility of women having children 98% free of HIV, the history of HIV is one strewn with the ugly facts of discrimination, human rights violations, and ongoing mistreatment of people living with HIV. There is no shortage of documentation regarding the struggle women living with HIV continue to face to access basic care, support, and treatment. There is however a dearth of remedies and of justice.
The authors' report, "At the hospital there are no human rights", will be launched at the International AIDS conference on July 26th
This article is one of a series of articles that openDemocracy 50.50 is publishing on 'AIDS, gender and human rights' in the run up to, and during, the AIDS 2012 conference in Washington DC, July 22-27.
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