International Journal of Gynecology and Obstetrics 106 (2009) 137–140
Contents lists available at ScienceDirect
International Journal of Gynecology and Obstetrics j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / i j g o
SEXUAL HEALTH
Women living with HIV and AIDS: Right to prevention, treatment, and health care Mokete Joseph Titus a, Jack Moodley b,⁎ a b
Department of Obstetrics and Gynecology, Grey's Hospital, Pietermaritzburg, South Africa Women's Health and HIV Research Group, Department of Obstetrics and Gynecology, Nelson R Mandela School of Medicine, University of KwaZulu-Natal, Durban, South Africa
a r t i c l e Keywords: Prevention Treatment HIV/AIDS Right to health Women
i n f o
a b s t r a c t Women living with HIV/AIDS not only bear the burden of this pandemic in under-resourced countries, but are faced with the human rights issues concerning the management of their condition, not only for their own health, but also for prevention of mother-to-child transmission of the virus and infertility investigation. This article tackles the issues of reproductive health rights pertaining to prevention of HIV, and rights regarding HIV testing including the ethical dilemmas associated with “opt in,” “opt out,” and mandatory testing. Accountability, rights to treatment and travel, and employment issues are also discussed. © 2009 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
1. Introduction
2. Reproductive health rights
The World Health Organization (WHO) defines health as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity. This definition, idealistic as it is, is relevant and applicable to women's health, and especially to women infected with HIV because many face untold misery, including stigmatization and discrimination. Women living with HIV/AIDS need management of the condition on 3 fronts; namely, treatment for themselves, treatment to prevent transmission of the virus to their unborn babies, and they may even need antiretroviral drugs as part of treatment for infertility. Three-quarters of individuals infected with HIV are in their reproductive years and can expect an almost normal life expectancy while receiving continued antiretroviral treatment. Most couples living with HIV are usually an infected man and an uninfected woman. When only the man is infected, spermatozoa can be isolated from seminal plasma and leucocytes containing cell-free and cell-associated HIV [1]. Historically, ethical and clinical concerns about the risk of infecting the child, the potential to worsen the course of the disease in the mother, and the limited life expectancy of the mother have led providers of health care to discourage these women from having children [2]. To date, effective antiretroviral treatment has substantially modified the quality of life and life expectancy of individuals with HIV. Furthermore, antiretroviral HIV therapy during pregnancy has reduced to a minimum the risk of transmitting the virus to the infant [3].
The right to health for everyone was promulgated as a core value of the constitution of the WHO at its establishment in 1946, and this was later articulated in article 12 of the International Covenant on Economic, Social and Cultural Rights, which states that all member countries must recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. All women have the right to sexual and reproductive health care, which includes HIV/AIDS prevention and treatment, and looks after the health of their expected and existing children. The South African Constitution guarantees the right to access healthcare services, including the right to reproductive health care, and the state has a responsibility to take reasonable legislative and other measures within available resources to achieve progressive realization of each of these rights [4]. All women have the right to be treated with respect, and women with HIV/AIDS have the same rights and needs as uninfected women. The International Community of Women Living with HIV/AIDS has developed a monitoring tool to ensure that reproductive health care for women living with HIV is governed solely by each woman's own fully informed and non-coerced choice.
⁎ Corresponding author. Women's Health and HIV Research Group, Nelson R Mandela School of Medicine, University of KwaZulu-Natal , Private Bag 7, Congella, 4013, South Africa. Tel./fax: +27 31 2604241. E-mail address:
[email protected] (J. Moodley).
3. Prevention Prevention of HIV infection is as important as treatment of the infection. This requires a multipronged approach that combines basic education, social empowerment, provision of protective measures such as condoms, implementation of a program of antiretroviral provision, prevention of violence against women, and promotion and protection of human rights generally [5]. This is especially so because only 12% of those who need antiretroviral treatment actually have access to it, and the treatment is not a cure for the infection [6]. The starting point for achieving the fifth Millennium Development Goal— namely, improvement of maternal health—should be universal access
0020-7292/$ – see front matter © 2009 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijgo.2009.03.026
138
M.J. Titus, J. Moodley / International Journal of Gynecology and Obstetrics 106 (2009) 137–140
to reproductive health care, which includes access to reliable family planning methods. Access to emergency contraception to prevent unplanned, unwanted pregnancies, as well as services for safe termination of pregnancy could avert 20%–30% of maternal deaths, thereby saving the lives of more than 100 000 mothers each year [7]. The global focus on antiretroviral therapy for people living with HIV and AIDS has somewhat sidelined the importance of expanding efforts to prevent new infections. The key to prevention of the infection is knowledge of one's own HIV status, and counseling and voluntary testing plays a central role in this. Approximately 90% of HIV-infected women in under-resourced countries do not know their status. A policy project survey for USAID found that in 73 low- and middleincome countries, only about 1 in 10 women had been offered HIV counseling and testing [8]. As one of its 10 key recommendations for reducing maternal deaths, the Committee on Confidential Enquiries into Maternal Deaths in South Africa recommends that all pregnant women should be offered information on screening for and appropriate management of communicable diseases, including HIV and AIDS, malaria, and tuberculosis [9]. The United Nations' Secretary General's Task Force on Women, Girls and HIV/AIDS in Southern Africa identified 3 key factors that contribute to the greater vulnerability to HIV infection of the region's women and girls: (1) the culture of silence surrounding sexuality; (2) exploitative transactional and intergenerational sex; and (3) violence within relationships with boys and men [10]. The simplest measure to protect sexual partners from HIV infection is the use of condoms. However, a major drawback for the effectiveness of condoms in HIV prevention is the difficulty faced by women in persuading their male partners to use them, and many men become aggressive when their female partners suggest that they use a condom or when they themselves use female condoms before embarking on penetrative sex. Sex workers are at increased risk of HIV infection because they may be pressurized to have unprotected sex by men who offer to pay them higher rates for sex without a condom [11]. Thus, prevention of HIV infection in Southern Africa, and elsewhere where similar conditions exist, requires educational measures, the economic and social empowerment of women and girls, and measures to address the different forms of gender-based violence [12]. Fundamental to protecting the rights of girls and women and to the prevention of HIV infection is to ensure that they receive education, particularly regarding their sexual and reproductive health and rights. The benefits of education show in their greater awareness of sex, health, and HIV/AIDS [13]. The Committee on the Rights of the Child, in its general comments on HIV/AIDS and the rights of the child, has interpreted the Convention on the Rights of the Child as affirming the right to sex education for children to enable them to deal positively and responsibly with their sexuality. The Committee further emphasized that effective HIV/AIDS prevention requires states to refrain from censoring, withholding or intentionally misrepresenting healthrelated information, including sexual education and information; and that state parties must ensure that children have the ability to acquire the knowledge and skills to protect themselves and others as they begin to express their sexuality [14]. 4. “Opt out” testing for HIV The use of “opt out” testing, whereby HIV testing is routine unless the person to be tested explicitly refuses to have the test, conforms to the human rights principles such as the right to privacy and personal autonomy, and makes the unassailable assertion that universal voluntary knowledge of HIV serostatus is a vital HIV prevention goal. The challenge in this regard is to ensure that this goal is realized with fairness [15]. Portrayal of HIV/AIDS against the background of either human rights, poverty, gender, or public health elicits different responses, but the measure of each response must be its ability to curtail the epidemic and at what social cost [16]. De Cock et al. [16]
further state that the philosophical and technical approaches to HIV/ AIDS prevention must interrupt the transmission of the virus, mitigate the clinical and social effects of the pandemic, reduce stigma and vulnerability, and promote the rights and welfare of HIV-infected and uninfected people. It is their belief that HIV exceptionalism cannot achieve these goals in Africa and suffers from inherent contradictions. Sub-Saharan Africa, which carries the biggest burden of the effects of HIV/AIDS, is likely to benefit from an approach based on a public health model that includes voluntary counseling and testing, partner testing and notification, routine HIV testing in prevention services such as prevention of mother-to-child transmission, routine HIV testing for patients seeking medical treatment, treatment for sexually transmitted infections, and enhanced access to HIV/AIDS care. 5. Right to treatment Antiretroviral therapy has greatly improved the prognosis of patients with HIV/AIDS. However, the stigma attached to the disease hampers efforts to prevent and to treat the infection. A recent survey in suburban South Africa showed that affluent South Africans still think that HIV/AIDS only affects people who live in informal settlements. What is forgotten in these circumstances is that other studies have shown that children from affluent families engage in risky behavior, such as taking drugs and having unsafe sex, which could result in HIV infection [17]. Women are willing to use sexual and reproductive health clinics and outreach services because they do not attract the stigma often attached to freestanding facilities, such as voluntary counseling and testing (VCT) or sexually transmitted infection (STI) clinics. Women already attend clinics or community-based distribution programs for contraceptive advice and when pregnant, millions of women in underresourced countries make at least one visit to a prenatal clinic and a significant proportion make at least one postnatal clinic visit [18]. One of the major sources of HIV/AIDS statistics in South Africa is pregnant women who use public clinics, which wealthier women are less likely to use. Programs for prevention, care, support, and treatment of HIV/ AIDS and STIs should therefore be integrated into these health services at all levels. Under-resourced countries are faced with declining expenditure on health and social services, increasing burdens posed by communicable diseases such as HIV/AIDS, and economic systems that are not oriented to fostering sustainable development for the poorest and most marginalized. In recognition of the social causation of these health trends, the WHO established a Commission on the Social Determinants of Health, reflecting a global concern for the persistence of, and in some cases, growth in global inequities [19]. Civil society groups have in the meantime advanced the course of patients' rights to access treatment for HIV/AIDS. The Treatment Action Campaign (TAC), an advocacy group for people living with HIV/AIDS, campaigned for greater access to treatment for all South Africans by raising public awareness and understanding about issues surrounding the availability, affordability, and use of HIV treatments. This should be seen against the background of remarks made by the South African Minister of Finance who, when called upon to provide funds for a Treatment Plan for HIV, argued that money should be spent on poverty relief and building schools than on antiretroviral drugs, which in his opinion were a waste of very limited resources [20]. The TAC, which was initially inspired by similar rights-oriented HIV organizations in affluent countries, soon developed into a broad-based social movement that has significantly advanced treatment access both in South Africa and in the region, facilitating the establishment of the Pan-African HIV/AIDS Treatment Access Movement. In a similar vein, the Malawian Patients' Rights Charter emerged following an advocacy training program hosted by an NGO and the Community Working Group on Health was formed in Zimbabwe in response to an ongoing decline in the quality of health services [21].
M.J. Titus, J. Moodley / International Journal of Gynecology and Obstetrics 106 (2009) 137–140
139
8. HIV/AIDS and human rights
6. Accountability “Legislation and court orders can only declare rights. They can never thoroughly deliver them. Only when people themselves begin to act are rights on paper given life blood.” Dr Martin Luther King
The Protocol on the Rights of Women in Africa came into being on November 25, 2005, and provides an important incentive to ratifying states to take seriously reproductive and sexual health rights. The Protocol, which supplements the African Charter on Human and Peoples' Rights, is groundbreaking in a number of respects, particularly in the sphere of reproductive rights. Where indignities to women and health disparities between population groups grow, health advocates are increasingly turning to the courts and human rights tribunals as forums before which to hold governments accountable for ensuring fair and reasonable access to health services. The general improvement of women's access to health care, as well as their ability to receive reproductive and sexual health services are both essential to achieving the Millennium Development Goals. These goals include reducing child and maternal mortality, promoting gender equality and the empowerment of women, and reversing the spread of HIV/AIDS, malaria, and other major diseases. Ministries of Health have to justify their resource allocation decisions by reference to fair and objective criteria, and where they cannot, they are required to remedy the unfairness. While debates about fairness might begin in the courts, they certainly do not end there, as judicial contests are triggers for larger public debates that illuminate the delivery of health services [22]. Legal principles help to frame these debates, and where necessary, they are applied to resolve debates that become legally contested. Key legal principles that arise in determining whether women have effective access to reproductive and sexual health services relate to whether there are evidence-based justifications of scientific benefit or cost-effectiveness to support the introduction of new drugs or their coverage in governmental health plans, transparency in the provision of and access to services, and finally, fairness in women's access to services [23]. Professional organizations are essential for the delivery of effective health care and its success, but they are frequently overlooked. Women and men in positions of power and influence can and should demonstrate leadership by learning more about key issues in reproductive health and rights in their sphere of influence and advocating for whatever change they can effect that contributes to improved health [24]. 7. Travel restrictions People living with HIV/AIDS often face unnecessary travel restrictions when they seek to enter other countries as visitors, immigrants, or refugees. These barriers are often discriminatory and perpetuate and reinforce the stigma already suffered by immigrants and refugees, people living with HIV/AIDS, and people from underresourced countries [25]. Of the 67 countries that place travel restrictions on people living with HIV/AIDS, 10 are in Africa, mainly in East and North Africa. Countries that erect entry barriers for people with HIV justify their policies as necessary to protect their citizens and to curtail health expenditure. The United Nations has stated that there is no public health rationale for restricting liberty of movement or choice of residence on the grounds of HIV status. On the other hand, concerns about the cost to the public healthcare system often reflect discrimination against people living with HIV/AIDS. Notwithstanding their affliction with HIV/AIDS or any other chronic illness, people living with HIV/AIDS often have the capacity to contribute to the society they join and their contribution often outweighs the cost of medical care.
Gender-based violence, stigmatization, and discrimination are a violation of the human rights of people living with HIV/AIDS and this has been recognized increasingly as a central problem that impedes the fight against HIV/AIDS [26]. People affected by HIV/AIDS who live in areas where stigmatization, discrimination, and threats against individuals with HIV/AIDS are common are less inclined to seek testing, thereby postponing treatment and the success in decreasing the transmission of the virus. AIDS NGOs and human rights advocates have linked HIV/AIDS to human rights and have demonstrated that human rights violations increase the spread of HIV/AIDS [27]. A study conducted in Nigeria found that sexually transmitted infection was a risk factor for violence and abuse in 28 of 128 women reporting abuse by the partner [28]. Gender-based violence and gender inequality have increasingly been cited as essential determinants of women's HIV risk. Dunkle et al. [29] found that women in relationships with high levels of male control were more likely to report recent and previous partner violence, and concluded that experience of violence and controlling behavior from the male partner is associated with increased risk of HIV infection for women [29]. 9. Conclusion The HIV pandemic continues to claim the lives of young, potentially productive, and otherwise fertile women in under-resourced areas. The impact of the pandemic exacerbates the vicious cycle of poverty, lack of education, lack of self-esteem as a result of the stigmatization, and gender-based violence. Unless the vicious cycle is broken, women and their children will continue to be disproportionately affected. One area in which the impact of HIV/AIDS is readily visible is in the Confidential Enquiries into Maternal Deaths in South Africa (2002–2004), where the highest number of deaths occurred as a result of non pregnancy-related infections, mainly AIDS related. The pattern is also alarmingly similar in the Perinatal Problem Identification Program, which records causes of perinatal deaths in South Africa. Amid the doom and gloom there have been success stories, notably in Brazil where it was demonstrated that under-resourced countries can effectively impact the prevalence of HIV/ AIDS as well as access to antiretroviral drugs. International healthcare professional organizations including FIGO, the International Confederation of Midwives (ICM), the International Council of Nurses (ICN), the International Pediatric Association (IPA), and the Council of International Neonatal Nurses (COINN) have jointly called on their members in their respective countries and communities to advocate for the promotion of effective interventions aimed at improving maternal, newborn, and child health. References [1] Semprini AE, Fiore S. HIV and reproduction. Curr Opinion Obs Gyn 2004;16(3): 257–62. [2] Kass NE. Policy, ethics, and reproductive choice: pregnancy and childbearing among HIV infected women. Acta Paediatr Suppl 1994;400:95–8. [3] Thorne C, Newell ML. Prevention of mother-to-child transmission of HIV infection. Curr Opin Infect Dis 2004;17(3):247–52. [4] Act 108 1996: Bill of Rights (SA). [5] Amnesty International. Women, HIV/AIDS and Human Rights. London: Amnesty International; 2004. Available at: http://www.amnesty.org/en/library/info/ ACT77/084/2004. Accessed January 11, 2009. [6] UNICEF. Data prepared for the UN Statistics Division; Millennium Indicators Database. Available at http://millenniumindicators.un.org. [7] Simelela N. Women's access to modern methods of fertility regulation. Int J Gynecol Obstet 2006;93(3):292–300. [8] Mehta S. The AIDS pandemic: A catalyst for womens' rights. Int J Gyn Obstet 2006;94(3):317–24. [9] Pattinson RC, editor. Saving Mothers: Third Report on Confidential Enquiries into Maternal Deaths in South Africa. 2002-2004. Pretoria: Department of Health; 2006. [10] United Nations Secretary-General's Task Force on Women, Girls and HIV/AIDS in Southern Africa. Facing the future together. New York: UN; 2004.
140
M.J. Titus, J. Moodley / International Journal of Gynecology and Obstetrics 106 (2009) 137–140
[11] Hearst N, Chen S. Condom promotion for AIDS prevention in the developing world: Is it working? Stud Fam Plann 2004;35(1):39–47. [12] Amnesty International. Swaziland: Human rights at risk in a climate of political and legal uncertainty. London: Amnesty International; 2004. Available at: http://www. amnesty.org/en/library/info/AFR55/004/2004/en. Accesses January 11, 2009. [13] UNFPA, UNAIDS, UNIFEM. Women and HIV/AIDS: Confronting the crisis. New York: UNFPA, UNAIDS, UN; 2004: 39. [14] United Nations Economic and Social Council. The right to education. Report submitted by the Special Rapporteur, Katarina Tomasevski. UN Document E/CN.4/ 2004/45, 15 January 2004, para.36, p16. Available at: http://www.unhchr.ch/ Huridocda/Huridoca.nsf/(Symbol)/E.CN.4.2004.45.En. Accessed January 11, 2009. [15] De Cock KM, Marum E, Mbori-Ngacha D. A serostatus-based approach to HIV/AIDS prevention and care in Africa. Lancet 2003;362(938):1847–9. [16] De Cock KM, Mbori-Ngacha D, Marum E. Shadow on the continent: public health and HIV/AIDS in Africa in the 21st century. Lancet 2002;360(9326):67–72. [17] Keaton C. Suburban South Africa too posh to talk about HIV. Sunday Times. September 21, 2008. [18] Askew I, Berer M. The contribution of sexual and reproductive health services to the fight against HIV/AIDS: a review. Reprod Health Matters 2003;11(22):51–73. [19] Marmiot M. Social determinants of health inequities. Lancet 2005;365:1099–104. [20] Jaspreet K, Nawaal D. Manuel under fire for AIDS comments. Mail and Guardian. March 14–19, 2003.
[21] Community Working Group on Health. Communities organizing for health. The story of the first years of the Community Working Group on Health in Zimbabwe, 1997-2001. Harare: CWGH; 2001. [22] Syrret K. Revisiting the judicial role in the allocation of healthcare resources-on deference, democracy, dialogue and deliberation. Jurid Sci 2005;30:1–29. [23] Cook RJ, Nwena CG. Womens' access to health care: The legal framework. Int J Gynecol Obstet 2006;94(3):216–25. [24] Shaw D. Women's right to health and the Millennium Development Goals: Promoting partnerships to improve access. Int J Obstet Gynecol 2006;94(3):207–15. [25] European AIDS Treatment Group. International travel restrictions index. Available at: www.eatg.org. [26] Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med 2003;57(1):13–24. [27] Mann JM. AIDS and human rights: where do we go from? Health Hum Rights 1998;3(1): 143–9. [28] Aimakhu CO, Olayemi O, Iwe CA, Oluyemi FA, Ojoko IE, Shoretire KA, et al. Current causes of and management of violence against women in Nigeria. J Obstet Gynaecol 2004;24(1):58–63. [29] Dunkle KL, Jewkes RK, Brown HC, Gray GE, McIntyre JA, Harlow S. Gender-based violence, relationship power and risk of HIV infection among women attending antenatal clinics in South Africa. Lancet 2004;63(9419):1415–21.