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Lack of HIV Prevention for Rape Survivors

Whether in war situations or in times of peace, many African women and girls face rape with little hope for redress from local officials and the courts. At the very least, however, they should be able to hope for basic protections that keep rape from being a death sentence. In wealthy countries, survivors of sexual violence where the perpetrator is HIV-positive or could be HIV-positive have access to post-exposure prophylaxis (PEP), a short course of treatment with antiretroviral drugs that reduces the risk of HIV transmission in these cases. PEP, which was first developed for occupational exposures to HIV (such as needle-stick injuries to health care workers), has been the standard of care for high-risk occupational exposures and survivors of rape in industrialized countries for some years.

In April 2002, the government of South Africa, recognizing the epidemic levels of sexual violence in the country, took the ground-breaking step of pledging to provide PEP to rape survivors throughout the country. PEP for rape survivors is provided on a very limited basis in a few other southern African countries but across most of the continent has not even been raised at the policy level. The pioneering experience of South Africa has illustrated that providing effective PEP is feasible and affordable. A recent investigation by Human Rights Watch showed, however, that the South Africa experience also illustrates many challenges that continue to keep PEP services from some rape survivors in spite of supportive policy at the central level.210 These include:

  • Widespread lack of information about PEP: Many rape survivors did not get PEP services simply because neither they nor the various agencies charged with providing services to them had any idea that they existed. Health care providers, police, and rape crisis center staff are inadequately informed about the service. An information campaign for the general public and for health care providers, police, social workers, teachers and others likely to be key contact points for rape survivors is urgently needed.

  • Lack of guidance regarding administration of PEP to children: Although the South African government has developed national guidelines for PEP treatment of individuals fourteen years and older, there are no corresponding guidelines for children under fourteen. As a result, many health care providers lack basic information about how—and even in what circumstances—to provide PEP to children under fourteen.

  • Legal issues specific to children: Children under fourteen cannot consent to HIV testing (a prerequisite to PEP treatment under current government protocols), and to medical examination and treatment. Problems obtaining consent are of particular concern in communities hard hit by HIV/AIDS, where children are often cared for outside of their biological families and locating an appropriate guardian in a timely fashion (or at all) is difficult. Consent may likewise be a problem where a parent or guardian is suspected to have committed the sexual assault at issue, or where the parent or guardian refuses medical examination, treatment and/or HIV testing against the child’s best interests.

  • Stigma and discrimination: Stigma associated with HIV/AIDS and attendant discrimination against people living with the disease and their families impedes access to PEP and related services. The stigma of rape and shame associated with the sexual abuse of children also interferes with access to PEP services by discouraging rape survivors and their guardians from disclosing abuses and seeking care.

  • Arbitrary denial of PEP and medico-legal services: Administrative requirements imposed by police and health care providers significantly interfere with access to PEP and other services for sexual assault survivors. The lack of oversight with respect to implementation of PEP and related services permits this interference to continue, at the cost of sexual assault survivors’ lives. In Eastern Cape and KwaZulu-Natal, for example, health care providers and counselors reported that sexual assault survivors were required to file a complaint with the police before they could be examined or receive medical treatment. This requirement may prevent a sexual survivor from receiving PEP within the necessary seventy-two-hour timeframe because of the time required to report a case (which may be hours, or in some cases, days), or because sexual assault survivors may not want to report the case to the police (as is often the case where survivors fear retaliation by the perpetrator or rely on him for economic support).

  • Inadequate investigation and prosecution of sexual offences: Only a fraction of rape survivors report the assault to the police; of these, very few are fully investigated; and of those only a small number are prosecuted in court and result in convictions. A recent study in South Africa reported that in 1997, for example, for every 394 women who were raped, 272 went to the police; seventeen were turned into cases for investigation; and five were referred to court for prosecution. The overwhelming failure to successfully prosecute sexual offences is often cited as a deterrent to reporting a rape in the first instance.

  • Unequal access to PEP and related services to rape survivors who are poor and who live in rural areas: PEP is unavailable outside of most major urban centers and access to health care and other services are poor to nonexistent. As a result, rape survivors who lack resources to travel to a health care facility where PEP and related services are available are often denied treatment altogether. There are, however, some NGOs and grassroots organizations that facilitate access to PEP and related services (including counseling and court support) to rural women and provide community education for women and children on issues related to sexual assault.

  • Relevant services lacking resources: Health services, social services, and the specialized police services that provide the structures and personnel for making PEP provision work are severely understaffed and under-resourced in many parts of South Africa. Police officers who are meant to transport rape survivors to health facilities for their examinations find themselves without enough vehicles to provide that essential service. Medical staff and counselors working with rape survivors lack funding and transportation to provide necessary follow-up to ensure compliance with PEP. Police and health care providers are already extremely overworked in some settings, undermining their respective capacities to provide adequate assistance to rape survivors.

In spite of these challenges, the South African experience represents a breakthrough for survivors of sexual violence. Access to PEP for rape survivors is a matter of life and death. Other African countries are failing in their human rights commitments to women and children in neglecting this affordable and feasible measure.

Unequal Access to Information and Health Services

Information about HIV transmission and AIDS treatment and care is essential for any country, community, or person to be able to mount an effective fight against HIV/AIDS. The right to information about HIV/AIDS, though recognized as a core element of the right to the highest attainable standard of health,211 is far from being fully realized in Africa. Survey after survey show that even in countries where there have been HIV/AIDS awareness programs for a fairly long time, large segments of the population appear to be unaware of the basics facts of HIV/AIDS. In Africa, many studies have concluded that as widespread as this problem is in the general population, it is even more pronounced among girls and women than among boys and men. A major study of a number of AIDS awareness indicators by the U.N. Population Office in 2002 concluded that in most African countries where surveys have been done, women and girls are generally significantly behind men and boys in their knowledge of HIV/AIDS and exposure to relevant information.212

To the degree that schools are a vehicle for dissemination of information on HIV/AIDS, this disparity is not surprising since girls face greater obstacles to enrolling or remaining in school than boys in many African countries, particularly girls in AIDS-affected families. In addition, health workers and health facilities are an important source of HIV/AIDS information for women and girls in many African countries; to the degree that they face discriminatory obstacles in access to those services, the information gender gap will persist.

In its regional analyses of Africa, the Center for Reproductive Rights has concluded that women’s and girls’ access to such health services as HIV and STD prevention and contraception are integrally linked to the discrimination they suffer in customary and religious law, including property and divorce law, social condoning of violence against women, and lack of equal access to education.213 This conclusion was confirmed in the accounts of many women to Human Rights Watch. In Uganda, for example, domestic violence was a direct impediment to women’s ability to seek and gain access to HIV information, testing, and other services.

Numerous Ugandan women told Human Rights Watch that a fear of violence prevented them from openly attending HIV/AIDS sensitization programs and that, despite feeling unwell themselves, they were unable to go for HIV testing or were too scared to pick up the results. Alice N., for example, tested HIV-positive in 1996. She has never revealed her HIV status to her husband. She explained, “I am married but I came alone [for testing]. I never informed him. He said, if I know you’re positive I’m going to kill you. We used to quarrel. He beat me. I never talked about it.” Her fear of her husband prevented her from having her children tested: “I get scared that [the children] will tell him they were injected. I can’t even test the children because he’ll be angry and ask why.”214

Some Ugandan women who were experiencing symptoms or otherwise sought care were also unable to reach testing and information centers because they had no money to travel or to pay for care, and were too scared to ask abusive husbands for funds, or because their husbands would simply not allow them to leave the home. Rebecca S. told us, “I got counseling after he had died. I wanted to go before but I didn’t have the means. I wouldn’t ask him. He would quarrel [fight].”215

Doctors in Uganda told Human Rights Watch that some women used the opportunity of antenatal care to test for HIV.216 Dr. Hafsa Lukwata is a general practitioner and works with the Association of Uganda Women Medical Doctors (AUWMD). She confirmed that women were using antenatal visits for HIV testing, but cautioned that because of this, some women were being prevented from going for antenatal care: “Men have refused women to go for antenatal. For prevention of MTCT (mother-to-child transmission) we are testing for HIV. Men are warning women not to go to the antenatal clinic or, if so, not to take the test. Once I was doing a pap smear. Women don’t know how we test for HIV. I told her I was going to take a sample of her cervical mucus. She warned me not to test for HIV.”217

Some women managed to attend HIV/AIDS clinics secretly, or joined support groups without their husbands’ knowledge. Jane N., forty, had been with her husband since their marriage was arranged when she was fourteen, and she was the second of three wives. She and her husband were HIV-positive, as was one of her co-wives. She went for testing secretly in 1999 when she found out he was sick. She explained: “I was scared to tell him that I had tested HIV-positive. He used to say that the woman who gives him AIDS, ‘I will chop off her feet.’ I have never told him. I told my children secretly.” She joined the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA), without telling him. “I feared telling him about my HIV-positive status because he would think I was a loose [sexually immoral] woman. He could chase me away from his home or beat me up. He always vowed to beat up whoever brought it.”218 Sandra Kyagabe is a counselor at NACWOLA, which operates in twenty-three districts providing support and care for HIV-positive women. She described the constraints that many NACWOLA members operate under: “A lot of women come to us secretly. When we do home visits, in some places we can’t go in NACWOLA vehicles. We have to park a distance away. We don’t put on uniforms and we say that we’re friends or from the church or other community groups. When we give them information they hide it. They hide the medical information they got from clinics.”

Nevirapine, a drug that reduces the risk of mother-to-child transmission is available to women in Uganda. However, HIV-positive women attempting to obtain nevirapine are advised that they should not breastfeed while taking the drug.219 According to women’s rights NGOs and women themselves, some women who are fearful of revealing their HIV-positive status to violent husbands will go ahead and breastfeed their children because either their husbands or female in-laws may notice. In an environment where breastfeeding is traditional, members of the community of relatives may interpret a mother’s failure to breastfeed as an admission of her HIV-positive status.220 A 2001 report by the International AIDS Vaccine Initiative found that breastfeeding in Uganda remained prevalent among infected women “partly due to social stigma: formula feeding can be tantamount to a public declaration of HIV infection.”221221 The deputy director of the UNAIDS New York office, Bertil Lindblad, recently stated, Women do not breastfeed their babies because they are unaware of the risks. They do so because they do not know their HIV status and they are afraid of condemnation or they cannot afford to use breast milk substitutes safely.”222 Or as Kyagabe explained, “They breastfeed because the man harasses them and they can’t ask for money for milk.”223 Alice N. illustrated this point when she explained why she breastfed her daughter despite her HIV-positive status: “I breastfed the children. The girl breastfed for three months. I knew that you shouldn’t breastfeed. When I had my daughter I knew I was HIV-positive but I breastfed because there was no money for milk.”224

In spite of difficulties of the kind experienced by these women, investments in HIV/AIDS programs and services, however inadequate to the scale of the problem, have probably improved access to counseling and information about reproductive health for some women on the continent. According to the Center for Reproductive Rights, however, adolescent girls still face serious barriers to reproductive health information and services.225 With promised restrictions from the United States, an important donor in the health sector in Africa, access to information about condoms and to condoms themselves may be further threatened by mandated adherence under U.S. regulations to “abstinence-only” education programs.226




210 Further detail and first-hand testimony on all of these problems are found in Human Rights Watch’s report [title], forthcoming.

211 See Committee on Economic, Social and Cultural Rights, General Comment 14. The Right to the Highest Attainable Standard of Health, U.N. Doc. E/C.12/2000/4 (2000), paras. 12(b), 21, 34, 36 and note 8; CRC, art. 24(2)(e); see also Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS, "HIV/AIDS and Human Rights-International Guidelines" (from the second international consultation on HIV/AIDS and human rights, 23-25 September 1996, Geneva), U.N. Doc. HR/PUB/98/1, Geneva, 1998, paras. 31(a), 38(b, g).

212 United Nations Department of Economic and Social Affairs, Population Division, HIV/AIDS Awareness and Behaviour (ST/ESA/SER.A/209), New York: United Nations, 2002, pp. vii, 5.

213 See, e.g., Center for Reproductive Rights, Women of the World: Anglophone Africa Progress Report 2001 (New York, 2001), p. 166.

214 Human Rights Watch interview with Alice N., Entebbe, Uganda, December 13, 2002.

215 Human Rights Watch interview, Luwero, Uganda, December 18, 2002.

216 Professor Florence Mirembe, head of Obstetrics and Gynaecology at Mulago Hospital, confirmed that antenatal patients are provided with the option of being tested for HIV and that the tests are administered solely at the request of the patient. Human Rights Watch telephone interview with Professor Florence Mirembe, head, Obstetrics and Gynaecology, Mulago Hospital, Uganda, May 28, 2003.

217 Human Rights Watch interview with Dr. Hafsa Lukwata, Association of Uganda Women Medical Doctors (AUWMD), Kampala, December 19, 2002.

218 Human Rights interview with Jane N., Pallisa, Uganda, January 10, 2003.

219 According to a WHO Technical Consultation on Behalf of the UNFPA/UNICEF/WHO/UNAIDS Inter-Agency Task Team on Mother-to-Child Transmission of HIV held in Geneva in October 2000, the prevention of mother-to-child transmission of HIV should be included in the minimum standard package of care for HIV-positive women and their children. A joint UNAIDS/WHO press release outlined the policy on breastfeeding and nevirapine: “An HIV-infected women should receive counseling, which includes information about the risks and benefits of different infant feeding options, and specific guidance in selecting the option most likely to be suitable for her situation. The final decision should be the woman's, and she should be supported in her choice. For HIV-positive women who choose to breastfeed, exclusive breastfeeding is recommended for the first months of life, and should be discontinued when an alternative form of feeding becomes feasible.” See Joint UNAIDS/WHO Press Release, “Preventing Mother-to-Child Transmission: Technical Experts Recommend Use of Antiretroviral Regimens Beyond Pilot Projects,” Geneva, October 25, 2000, [online], http://www.who.int/reproductive-health/rtis/MTCT/documents/press_release_arv_25_10_00/Press_ARV-25-10-00.en.html (retrieved June 3, 2003).

220 At a conference held in April of 2003, Dr. Phillipa Musoke the head of Makerere University’s Paediatrics Department and a pediatrician at Mulago Hospital reportedly stated, “In our society when a baby cries, the husband, aunties, uncle, and in-laws tell the mother to breastfeed it. There is no way she is going to tell them she cannot because she has HIV/AIDS. The nurses themselves keep shouting to the mother to breastfeed her baby when it cries. There are so many pressures on the HIV/AIDS positive mother.” See Lillian Nalumansi, “HIV mums pressured to breastfeed their babies,” the New Vision, April 21, 2003, [online], http://www.newvision.co.ug/ detail.php?mainNewsCategoryId=9&newsCategoryId=34&newsId=129127 (retrieved May 19, 2003). A recent article in The Lancet quotes Francis Mmiro, chairman of the technical committee for the prevention of mother-to-child HIV transmission in Uganda, as stating that 61percent of the HIV-positive mothers who attended antenatal clinics at the National Referral Hospital, Mulago, choose to breastfeed even after being informed that HIV can be transmitted through breastfeeding. Saul Onyango, the medical officer in charge of prevention of mother-to-child HIV transmission, is quoted as estimating that as many as 80 percent of rural HIV-positive mothers choose to breastfeed. See Charles Wendo, “Most Ugandan HIV-positive mothers insist on breastfeeding,” The Lancet, vol. 358 August 25, 2001, [online], http://pdf.thelancet.com/pdfdownload?uid=llan.358.9282.news.17420.3&x=x.pdf (retrieved May 19, 2003). The MTCT-Plus Initiative, in which the mother and her family continue to receive antiretroviral treatment after delivery, is based at Columbia University’s Mailman School of Public Health and supported by a coalition of nine foundations. Dr. Peter Mugyenyi, director of the Joint Clinical Research Center in Uganda, expressed the view that if sufficiently funded, the program should be effective in decreasing mother-to-child transmission of HIV and should contribute significantly to the prevention of HIV transmission generally. Human Rights Watch telephone interview with Dr. Peter Mugyenyi, director, Joint Clinical Research Centre, Kampala, May 29, 2003, and e-mail from Dr. Mugyenyi to Human Rights Watch, June 2, 2003.

221 Emily Bass, “Is There a Role for Vaccines in Protecting Infants Against HIV in Breast Milk?,” International AIDS Vaccine Initiative Report: Women & AIDS Vaccines, vol. 5 no. 8, July-September 2001, [online], http://www.iavi.org/reports/259/breastfeeding.htm (retrieved May 20, 2003).

222 Bertil Lindblad, deputy director UNAIDS, Forty-Seventh Session of the Commission on the Status of Women, New York, March 5, 2003, [online], http://www.unaids.org/whatsnew/speeches/eng/47thcsw%5F050303%5Fen.html (retrieved May 19, 2003).

223 Human Rights Watch interview with Sandra Kyagabe, counselor, NACWOLA, Kampala, December 19, 2002.

224 Human Rights Watch interview with Alice Namagembe, Entebbe, December 13, 2002.

225 See Center for Reproductive Rights, Women of the World: Anglophone Africa Progress Report 2001 (New York, 2001), pp. 155-56.

226 Under legislation that has already been enacted, a substantial portion of U.S. financial assistance for international HIV/AIDS prevention programs for 2006 through 2008 must be spent on abstinence-until-marriage programs. United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003, Pub. L. No. 108-25, 117 Stat. 711 (2003), sec. 403.


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December 2003