Silenced and forgotten

The impact of the HIV and AIDS epidemic is felt hardest by the individuals who are infected or affected by the disease, and in particular by individuals who are especially vulnerable to HIV infection due to stigma and discrimination, poverty, a lack of access to education, health and other services that promote HIV awareness. However, the impact of HIV and AIDS goes beyond the individual or household level – it affects nations as a whole.

March 6th, 2013

The impact of the HIV and AIDS epidemic is felt hardest by the individuals who are infected or affected by the disease, and in particular by individuals who are especially vulnerable to HIV infection due to stigma and discrimination, poverty, a lack of access to education, health and other services that promote HIV awareness. However, the impact of HIV and AIDS goes beyond the individual or household level – it affects nations as a whole. In October 2010, issued a call for proposals to work with three marginalised groups – namely women living with HIV (WLHIV), sex workers (SW), and lesbian, gay, bisexual and transgender (LGBT) individuals – to develop a regional advocacy strategy on HIV and AIDS. UN Women chose the Open Society Initiative for Southern Africa (OSISA) to conduct the work.

The goal of the project was to build the capacity of WLHIV, SW and LGBT groups to develop a regional action plan to address the specific and shared HIV and AIDS challenges that continue to confront them in ten southern African countries – Angola, Botswana, Lesotho, Malawi, Mozambique, Namibia, South Africa, Swaziland, Zambia and Zimbabwe – and three Indian Ocean states – Comoros, Mauritius and Seychelles.

Women living with HIV, sex workers, and LGBT activists and their allies first convened in Johannesburg in 2011 to develop a joint regional advocacy strategy. Three individual sector meetings were held in the first phase, while a larger platform meeting bringing together all three sectors was held in 2012.

At these meetings women living with HIV, sex workers, and LGBT individuals identified HIV specific issues affecting them and drafted agendas highlighting specific and shared issues that increase their vulnerability to HIV and how they wanted these issues to be addressed by both state and non-state actors. Delegates engaged in contextual analysis of the issues affecting them in the environments where they live and work. There was also a problem identification and defining process highlighting the social-cultural and political challenges that affect them and increase their vulnerability to HIV. In the build-up to the agenda setting, delegates also embarked on the identification of supporters and detractors in relation to issues and challenges affecting them. Key areas for action were then identified and defined. It was agreed that any agenda on HIV and AIDS for women living with HIV, sex workers and LGBT individuals needs to address both the broader structural issues as well as the specific and more localised challenges.

At the end of the community consultation process, OSISA analysed all the inputs and all the issues raised and produced a list of recommendations for three of the key role players – governments, civil society organisations, and international donors and partners. The full list of recommendations can be found at the end of this paper.


In 2010, an estimated 68 percent of all people living with HIV resided in sub-Saharan Africa – a region with only 12 percent of the global population. AIDS has claimed at least one million lives annually in sub-Saharan Africa since 1998. Nearly half of all AIDS-related deaths in 2010 occurred in southern Africa. The region also continued to account for 70 percent of all new HIV infections globally. Despite these statistics, women living with HIV, sex workers and LGBT individuals remain marginalised and excluded from HIV information, education and communication (IEC). They are also often left out of treatment, care and support programmes.

Most countries in Africa criminalise sex work activities and same sex practices in one form or another, either explicitly or latently. This consistently leads to discrimination against individuals who belong to these groups through poor access to justice, inappropriate health care services and stigmatisation – characterised by their being blamed for driving diseases such as HIV and other sexually transmitted infections (STIs). Furthermore, the unwillingness of state actors and stakeholders to engage in meaningful dialogue and research regarding sex work, gender roles and same sex practices erects barriers towards appropriate and effective policy formulation.

The lack of recognition, representation, participation and engagement of these groups further excludes them from important national health programming and campaigns. It also denies them their right to be accepted as part of the community for which policies or laws are formulated.

Women living with HIV and HIV & AIDS

Women living with HIV in southern Africa and the Indian Ocean states continue to suffer grave violations of their human rights. Women living with HIV have had their right to reproductive choice taken away, by denying them the right to conceive and give birth. Authorities in many countries in the region continue to pay lip service to cases of women living with HIV being coercively and, in some cases, forcibly sterilised. In Namibia and Swaziland, cases of women living with HIV being subjected to coerced sterilization have been documented and litigated. In a recent landmark judgment, the High Court in Windhoek found that the Namibian government had coercively sterilised three women living with HIV in violation of their basic rights.

At the end of 2010, it was estimated that out of the 34 million adults worldwide living with HIV and AIDS, half of them were women. The AIDS epidemic has had a unique impact on women, which has been exacerbated by their role within society and their biological vulnerability to HIV infection. Generally, women are at a greater risk of heterosexual transmission of HIV. Biologically, women are twice as likely to become infected with HIV through unprotected heterosexual intercourse as men. In many countries, women are less likely to be able to negotiate condom use and are more likely to be subjected to non-consensual sex. Additionally, millions of women have been indirectly affected by the HIV and AIDS epidemic. Women’s childbearing role means that they have to contend with issues such as mother-to-child transmission of HIV. The responsibility of caring for AIDS patients and orphans is also an issue that has a greater effect on women in southern Africa and the Indian Ocean states.

Incidents of violence against women (VAW) – regarded as any ‘act of gender-based violence that results in, or is likely to result in, physical, sexual or psychological harm or suffering to women, including threats of such acts, coercion or arbitrary deprivation of liberty, whether occurring in public or in private life’ – continue to escalate in southern Africa and the Indian Ocean states. In Zambia, Demographic Health Survey (DHS) data indicates that 27 percent of ever-married women reported being beaten by their spouse/partner in the past year – a rate that rose to 33 percent for 15-19 year-olds and 35 percent for 20-24 year-olds. Fifty-nine percent of Zambian women reported having experienced violence after the age of 15 (Kishor & Johnson, 2004). In South Africa, 7 percent of 15-19 year-olds reported having been assaulted in the past year by a current or ex-partner, while 10 percent reported being forced or persuaded to have sex against their will (South Africa DHS, 1998).

Violence against women increases their vulnerability to HIV by limiting their ability to negotiate safer sex practices. Women may also be infected with HIV and other sexually transmitted infections through direct means of violence like rape. In South Africa and other neighbouring countries in the region, there has been a growing trend of violence towards lesbian and bisexual women by men who claim to be ‘curing’ the women of their homosexual tendencies. The attacks also extend to transgender people and other gender non-conforming women. These attacks are very violent and many of them end up in death or permanent injury. This form of violence has continued to make lesbian and bisexual women and transgender people more vulnerable to HIV and has been a major barrier to them accessing sexual reproductive health services.

Cervical cancer is one of the leading causes of cancer-related deaths among women in developing countries, including southern African and Indian Ocean states. Zambia, for example, has the world’s second highest rate of cervical cancer and deaths each year. Women who are HIV-infected are 4-5 times more likely to develop cervical cancer than women who are not HIV-infected.

Sex Workers and HIV & AIDS

Recent studies continue to confirm that in many southern African and Indian Ocean states sex workers experience higher rates of HIV infection than most other population groups. For example, female sex workers have the highest prevalence of HIV in Malawi at 70.7 percent. The Swaziland HIV Bio-Behavioural Surveillance Study and a Qualitative Study among Most At-Risk Populations, which was conducted by Population Service International in conjunction with Johns Hopkins University in the United States, showed that HIV prevalence among sex workers stood at 70.3 percent.

Violence and discrimination against sex workers, police raids, incarceration, and a lack of accessible and relevant information, evidence-based prevention tools and treatment services compromise the ability of sex workers living with HIV to protect their health and receive adequate care, treatment, and support. Migrant sex workers who are living with HIV are particularly excluded from access to treatment and care due to xenophobia and other barriers. Transgender sex workers seeking transgender-specific health care and gay male sex workers seeking non-judgmental health care are similarly neglected in most of the region.

In cases where interventions targeted at sex workers do exist, these are often confined solely to female sex workers who have sex with male clients with none targeting male or transgender sex workers.

LGBT individuals and HIV & AIDS

For same sex practising people in southern Africa and the Indian Ocean states, like in other parts of the globe, HIV and AIDS research and programming has focused on men who have sex with men rendering other same sex practising individuals invisible in the HIV and AIDS picture.

The belief that women who have sex with women are at no or low risk of HIV infection has led to the exclusion of women who have sex with women from HIV prevention efforts, access to health care services, education, treatment and research (Gomez, 1995; Stevens, 1993 as cited in Montcalm and Myer, 2000; Hughes and Evans, 2003; Teti et al., 2007; Gay Men’s Health Crisis, 2009). Specific groups of women are more affected by this exclusion than others, such as women who have sex with women and who living with HIV, including those who do not identify themselves as lesbian or bisexual (Young et al., 1992; Marazzo, 2000; Arend, 2003; Shisana and Louw, 2007; Lenke and Piehl, 2009). This social exclusion is in many respects informed by gender inequities inherent in almost every country of the world. For this reason, any HIV prevention, treatment and care programme for women who have sex with women must work from the premise that access to knowledge and services on health is disproportionate for women and men in a context where gender inequities persist (Doyal, 1995; Lorberm, 1997).

There is also a widespread misconception, characterised by exclusion from research or focus, by both women who engage in same sex relations and other stakeholders that women who have sex with women are not at risk of HIV/AIDS. In a 2002 study conducted by the Human Science Research Council (HSRC) in South Africa, 13 percent of lesbian women (aged 15–49) self-reported a positive HIV test result. While this rate is lower than seroprevalence rates for heterosexual South African women, it still represents a substantial number of people for whom no targeted HIV prevention, treatment or care services currently exist.

Same sex practising women in southern Africa and the Indian Ocean states – and in South Africa in particular – continue to experience sexual violence in the form of rape, and this form of violence increases their vulnerability to HIV and AIDS and is an infringement on their sexual and human rights.

In southern Africa and the Indian Ocean states today, transgender people continue to remain at the margins of HIV and AIDS programming, their needs and issues are under researched and health programing for transgender people is usually integrated into programming for men who have sex with men. The marginalised position of transgender people can have serious effects on their quality of life. Overall, high HIV infection rates, inaccessibility of health services, high incidence of sexual violence and murder, and vulnerability to societal ills, such as substance abuse, can all potentially reduce the life expectancy of transgender people in Africa.

In the context of the global AIDS epidemic, sex between men is significant and throughout the course of the global epidemic, consistently high levels of HIV infection have been found among men who have sex with men. However, in many southern African and Indian Ocean states, men who have sex with men are – like other same sex practicing people – less visible. Same sex relations are stigmatised, officially denied and criminalised in most of these states. Most governments and societies in the region continue to refuse to acknowledge the existence of same sex practising people in their countries, although research done in southern Africa, the Indian Ocean states and other parts of Africa proves otherwise. As a result, HIV prevention campaigns often only talk about the risks of heterosexual sex and there is little or no appropriate information available for LGBT individuals. This gives a false impression that they are not at risk and serves to justify their exclusion from HIV and sexual and reproductive health services.


  • 1 Hood Avenue/148 Jan Smuts; Rosebank, GP 2196; South Africa
  • T. +27 (0)11 587 5000
  • F. +27 (0)11 587 5099