| HIV & AIDS responses and reproductive health care: What about the women? |
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| Written by Lwanga Mwilu (1) |
| Friday, 16 July 2010 08:04 |
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The HIV & AIDS epidemic has significantly impacted the women of the word. 16 million women are infected across the world and another 850,000 die due to HIV & AIDS annually. It is not surprising that it is considered “an epidemic of women.”(2) Sub-Saharan Africa is the most affected region and accounts for 67% of the global population living with HIV.(3) As in many others, women bear the burden of the epidemic disproportionately in this region, a fact that necessitates continuous focus on one of the main issues women are faced with: reproductive health. Existing research findings show that responses to and interventions in the HIV & AIDS epidemic largely neglect the issue of the sexual and reproductive health needs of infected women. In some instances, there are intentional moves to frustrate the fulfilment of such needs and entitlements. The case of HIV positive women who were allegedly forcibly sterilised in Namibian public hospitals is just one example of systematic discrimination against infected women with regards to their sexual and reproductive health. It also represents negative progression from more subtle discriminatory practices aimed at controlling the fertility and reproductive options of infected women, such as injectable contraceptives administered as part of antiretroviral therapy (ART) without women’s knowledge,(4) to more blatant and invasive measures of control. Using examples from Namibia and Kenya, this paper explores the status of the rights of women infected with HIV & AIDS specifically with regards to their sexual and reproductive health. The examples cited are cases of women who were denied their right to sexual and reproductive health due to their HIV status. This brief argues that existing HIV & AIDS prevention and treatment paradigms do not acknowledge and prioritise the sexual and reproductive rights and needs of infected women as much as they should. HIV positive women who seek maternal health care are often regarded second priority to the unborn child.(5) HIV positive women and reproductive healthGiven that HIV & AIDS is prevalent among women in the child-bearing age group, reproductive health cannot be divorced from treatment and other interventions. The reality on the ground, however, presents a different picture, one in which this issue is hardly tackled if at all. The principal aspects of HIV & AIDS prevention and treatment strategies that target women’s reproductive health focus on the Prevention of Mother to Child Transmission (PMTCT) of the HI virus. But some have argued that PMTCT programmes prioritise the unborn child at the expense of the mother. This is partly because the widespread use of single-dose nevirapine, an ARV drug, in such programmes does not conform to the World Health Organisation’s recommendations of more effective combination therapies that do not potentially jeopardise the affected women’s future treatment outcomes.(6) Eyakuze et al. therefore contend that “the intersection between HIV and pregnancy exposes the ethical and legal inequalities inherent in a societal structure that places more value on a woman’s reproductive capacity than her own individual well being.” They argue that a more comprehensive approach that puts women’s health needs at the centre of AIDS responses is needed.(7) Marion Stevens, who has worked in the area of sexual and reproductive health and HIV & AIDS for over 20 years, also points out that whilst babies’ health is prioritised in PMTCT programs, the HIV positive women in case are treated as dangerous carriers of disease and not as people with a right to information and choices.(8) She argues that the language used in the area of PMTCT likens HIV positive women to an instrument that potentially passes HIV on to infants. She cites examples of proposals titled “Saving unborn babies” and health workers referring to HIV-positive pregnant women as “suicide bombers.” We need to move away from the treatment paradigm that conceptualises women only as mothers, and embrace one that takes into account their sexual, reproductive and fertility intentions. “Most crucially, they need appropriate and well articulated information and support.” Stevens argues that pregnancy should be a central issue in an epidemic that primarily affects women, but it is much neglected. She cites the ‘Guidelines for the use of anti-retroviral agents in HIV-1-infected adults and adolescents,’ published in 2008 by South Africa’s Department of Human Health Services, which devotes only two paragraphs out of the total 127 pages to pregnancy. HIV positive women also face much stigma that clings to their reproductive health. A 2007 study which investigated the reproductive intentions of HIV positive men and women in Cape Town, South Africa, revealed that participants strongly anticipated social disapproval associated with their HIV status and reproduction. Most female respondents disclosed that they had not discussed their reproductive desires and intentions with health care providers due to anticipated negative reactions. The few who had done so found the counselling environment unsupportive.(9) The overall findings of the study point to a need for explicit policies that recognise reproductive rights and choices for people living with HIV & AIDS. They also point to a need for interventions and strategies that promote safer and healthier reproductive options for infected people. KenyaA report by the Federation of Women Lawyers - Kenya (FIDA Kenya) reveals that HIV positive women who seek maternal health care are victims of an already poor health care system that is known for its violations of patients’ human rights.(10) The report states that women who seek reproductive health services face such serious violations as physical and verbal abuse and detention in medical facilities for those that fail to pay. Inadequate funding, medical staff and equipment are factors that further compromise the quality of health care delivered to women. These problems are aggravated in the case of HIV positive women because they require specialised counselling and care. The report further reveals that the rights to consent and confidentiality of people testing for HIV are often disregarded when the people involved are pregnant women. They are reportedly subjected to coercive practices, including being made to succumb to tests, or they are tested without their knowledge, which is a direct contravention of Kenya’s National Guidelines on Voluntary Counselling and Testing (VCT). The women who are found positive are made aware of their HIV status in the presence of other patients, which violates their right to confidentiality and privacy. Health care providers insist that pregnant women are tested for HIV because they need to know the mother’s status in order to dispense appropriate care and advice to minimise the risk of HIV transmission to the baby during pregnancy, labour, delivery and breastfeeding. It can, therefore, be stated that knowledge of the mothers’ status is an important determinant of either the success or failure of any PMTCT initiatives. Regardless of its importance, this fact does not warrant the violation of the mothers’ rights to consent and choice. HIV positive women furthermore face discrimination and negative attitudes by health providers, particularly regarding their sexual and reproductive practices. The cases cited represent a violation of basic human rights that the Kenyan government has committed itself to uphold. “Fundamental human rights that the government of Kenya is obligated to guarantee include the right to health; the right to privacy and informed consent; the right to be free from torture and cruel, inhuman or degrading treatment; the right to life, liberty and security of person; the right to dignity; the right to found a family; the rights to non-discrimination, equal protection, and equality before the law; and the right to information.”(11) NamibiaIn Namibia, the status of the reproductive rights of women living with HIV & AIDS was brought under international scrutiny following an allegation that HIV positive women were being forcibly sterilised in public hospitals. In 2009, around 50 HIV positive women approached the Legal Assistance Centre (LAC) for help, alleging that they had been forcibly sterilised at government hospitals during childbirth. Amon Ngavetene, a lawyer from the LAC who took up the case, alleged that the women were sterilised during delivery against their will and without their knowledge. He further alleged that those women who signed consent forms did so without having good knowledge of what was going on because the forms were in English, a language they do not understand.(12) Allegations of forced or coerced sterilisation of HIV positive women in public hospitals had surfaced years earlier through the International Community for Women Living with HIV/AIDS (ICW). The ICW learnt about the development through accounts given by affected members who participate in its regular forums for HIV positive young women. The case, however, could not be pursued in court as the ICW lacked witnesses. The affected women could not testify publicly because disclosing both their HIV status and their inability to have children was not something they were prepared to do.(13) The ICW has since conducted fact-finding missions to three of Namibia’s 13 administrative regions and documented accounts from sterilised women. Some of the accounts include the complaint that the consent forms had medical jargon that the health workers did not care to simplify. Some women were allegedly made to sign a form consenting to undergo a procedure simply known as “BTL” without understanding what it involved and especially its implications. BTL is the acronym for bitubal ligations, a permanent form of sterilisation. “The procedure involves sealing a woman’s fallopian tubes to prevent pregnancies. Reversals are possible but the procedure is costly and success is uncertain.”(14) Forced sterilisation is a gross violation of basic human rights and a manifestation of stigma against people living with HIV. It violates the HIV positive women’s right to reproductive health is denied on the basis of the health state. It undermines such rights as “the right to liberty and security of the person; to health, to found a family, including reproductive health; to family planning; to privacy; to equality; to freedom from discrimination; and to life.”(15) In its condemnation of the sterilisations, the Namibia Planned Parenthood Association (NPPA) demanded for “increased access to reproductive health information and services that will empower all expecting mothers, whether HIV positive or negative, with the right to choose.”(16) As in Kenya, women in Namibia have also complained about their right to confidentiality and privacy being violated by health workers. HIV test results have allegedly been revealed to women in front of other patients in hospital waiting rooms. The women further allege that health workers verbally abuse and tell them that they brought HIV upon themselves.(17) The impact of sterilisation on the affected women is not limited to emotional and physical effects, but may include social and economic consequences as well. Women who are unable to have children, particularly those who belong to communities informed by traditional beliefs, face severe stigmatisation which may be equal to stigmatisation associated with HIV & AIDS. The women are considered ‘not woman enough’ and their chances of getting or staying married are significantly reduced. For instance, some of the affected women have complained that their inability to have children had cost them the possibility of marriage. Saima Moses of the ICW, who researched cases in northern Namibia, said the sterilisations had destroyed marriages. She said some of the sterilised women’s partners had taken on additional girlfriends in the hope of fathering children and others had become physically abusive. “Some of these women are dependent on these men for money so [when they can't give them children], these men will tell them they are ‘eating for free.’” Moses also pointed out that this feeling of disempowerment at home influences the women’s experiences at hospitals and clinics where they feel unable to challenge the doctors’ orders. She added that the majority of the women are illiterate and when doctors speak to them in English, women tend to view doctors as knowledgeable and always right.(18) The case of three affected women is on-going in the Namibia High Court. On 4 June 2010 the case was adjourned to September 2010. Solidarity protest matches have been staged outside the Namibian embassies in Pretoria, Lusaka and Washington DC. ConclusionStrategies aimed at policing the HIV positive women’s bodies through controlling their fertility and reproductive options are a gross violation of their basic human rights. Such strategies are a manifestation of the deeply rooted and institutionalised nature of stigma against people living with HIV & AIDS. Denying a person the right to make informed choices with regard to their sexual and reproductive needs simply because they have HIV is not just a health care system failure but an outright disregard for human dignity and equality. Forced sterilisation may be the most extreme effort to control the fertility of HIV positive women without their knowledge, but it is not the only one that has been reported. In December 2007, a meeting of the ICW learnt that some HIV positive women in South Africa and other Southern African countries were receiving injectable contraceptives as part of their Highly Active Anti-Retroviral Treatment (HAART) regimen. The women only became aware of the real purpose of the injections later. “This kind of treatment is like the era of population control, where women were not provided with information regarding treatment, in a paternalistic fashion,” Laura Lopez Gonzalez commented recently via GenderLinks.(19) These trends cast a questionable light on the status of HIV positive women’s human rights and sexual and reproductive health entitlements. The discrimination inherent in the prevention and treatment strategies in place needs to be addressed, and HIV positive women’s reproductive rights given as much priority as other HIV & AIDS interest areas. NOTES: (1) Lwanga Mwilu is an External Consultant for Consultancy Africa’s Gender Unit (
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