I am the first South African woman to publicly disclose my HIV status, and have been HIV+ for 15 years. I represent the voices of people living with HIV/AIDS throughout South Africa – at many levels.


  • I am Director of the Positive Women’s Network and a founder member of Treatment Action Campaign
  • I represent positive people in the South African National AIDS Council advising the Deputy President and the Cabinet on issues related to HIV/AIDS.
  • I sit on the Country Coordinating Mechanism of the Global Fund as the representative of people living with HIV and AIDS.
And yet I STILL feel that GIPA is mere window dressing – tokenism to rubber stamp policies, documents and decisions.

My experiences have shown me that the involvement of people living with and affected by HIV and AIDS is vital to the prevention response. As we all know the GIPA principle, (the greater involvement of people living with HIV and AIDS), was signed in 1994 by 42 heads of state and yet we still haven’t moved from principle to practice. So why hasn’t the rhetoric become a reality?

Community involvement and ownership of treatment preparedness, through treatment literacy, advocacy and counselling has been a successful strategy in introducing the roll out of ARVs. The evidence shows that this involvement has boosted the health care system, helped to tackle the stigma and discrimination in the clinic setting and improved adherence in those that are on treatment. People living with HIV and AIDS could play a similar role in the prevention response – but at the moment GIPA is under utilised – in the true sense.

I say this as someone who represents positive people in my country’s response, someone who represents the voices of the community at the highest levels. For example, in one case my involvement in government processes was ineffective because it was ignored – but when I reported this back to the community leaders and positive people in the 9 Provinces of South Africa, we changed our strategy. When we took to the streets to demonstrate the government listened. It doesn’t have to be like that and it shouldn’t be like that. INVOLVE US IN


A prevention response that doesn’t recognise the needs and desires of people living with HIV and AIDS cannot succeed. The roll out of treatment programmes provides an important opportunity to cater to the prevention requirements of positive people. Positive prevention seeks to increase psycho social wellbeing and encourage solidarity amongst people living with HIV and AIDS. Alongside ARVs we need services that delay disease progression - treatment for opportunistic infections, including TB and STIs. Positive women are likely to suffer from cervical cancer, and pregnant women with HIV have an increased risk of anaemia.


Prevention programmes need to provide positive people with information and practical support to be able to negotiate safer sex and avoid re-infection. In many instances HIV positive people are in partnerships with people who are negative. HIV prevention programmes must cater for their needs through the provision to all people – free of charge – of female condoms (FC2) and male condoms.


In an era of treatment positive women and their partners have a right to choices about whether they have children. They should have the services and support so that they can choose to get pregnant safely and confidently, give birth to and raise a healthy child. For those who have unwanted pregnancies they should also have the right to choose to have a safe abortion.


About 5 million children worldwide have been infected with HIV and almost all of these infections are through MTCT. In 2005, 700,000 children became infected with HIV. 3,1 million people died of AIDS in 2005 (570,000 of them are children ). There is a need to rapidly scale up programmes to prevent MTCT through all available avenues including services for pregnant women and women of child bearing age, family planning services, antenatal care and obstetric care.

Barriers to these services include the high price of AZT and nevirapine, under resourced health systems that lack coverage, a lack of health care workers and a lack of information for pregnant women. Also – traditional and cultural norms and government policies that encourage breast feeding but don’t cater for HIV positive women through the supply of formula milk – or clear messages about the importance of exclusive breast feeding rather than mixed feeding – and anti stigma work to address the discrimination that HIV positive women face.


Increased access to ARV treatment and health care is enabling people living with HIV to live positively. They have the right to enjoy their sexuality and therefore need a range of contraceptive methods, including dual protection strategies to reduce the risk of unwanted pregnancies, STIs and HIV.


Men have rights and responsibilities too. In many instances the role of men in HIV prevention is not clear. Men living with HIV and AIDS are slow to access health services. There is an urgent need for user friendly health care services that allow both partners to maintain their health, and in particular, universal access to sexual and reproductive health information and services for women and men which gives them a choice according to the Cairo agenda. Men also play a role as gatekeepers and can be a barrier to access for women and young people to the sexual and reproductive health information and services which are their right.


The experiences of positive women have contributed to an increased understanding of the gender power dynamics surrounding sexual and reproductive health and rights. ABC messages have adopted one size fits all approaches which treat people as homogenous. We need to tailor our response to the realities of different people’s lives and be gender sensitive.

Unequal gender relations, sexual violence, discrimination against sexual minorities, conflict and poverty create dynamics of gender, power and marginalisation that make people more vulnerable to both HIV and poor sexual reproductive health.

The feminisation of HIV clearly shows that many women and girls do not necessarily control their sexual activity – and thus the need to invest in more user-controlled prevention methods such as Microbicides and female condoms (FC2). We need to have systems in place that are responsive to rape survivors’ need to access PEP (post exposure prophylaxis) immediately – without question – and without causing them any further distress.


So WHAT is the EU doing to advance the greater involvement of people living with HIV/AIDS ?

And WHAT is the EU doing to advance the sexual and reproductive health and rights of people living with HIV and AIDS ?