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Putting women's rights at the heart of the HIV and AIDS response
International Treatment Preparedness Coalition (ITPC)
December 2007

http://www.actionaidindia.org/Walk_the_talk_Press_release.htm

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Executive summary

It is time to walk the talk on women, human rights and universal access to HIV and AIDS services. We call on decision-makers to take urgent and practical action to ensure that women and girls' rights are recognised as an essential foundation for achieving universal access to prevention, treatment, care and support.

Rights violations drive the pandemic

Using research from 13 countries, this report demonstrates that gender inequalities and the persistent and systematic violation of their rights are leaving women and girls disproportionately vulnerable to HIV and AIDS. Poverty and limited access to education and information, discriminatory laws and ingrained gender inequalities all deny women and girls their rights. Gender-based violence, health systems that serve the needs of women poorly and limited participation in decision-making processes all fuel the feminisation of the HIV and AIDS epidemic.

Globally the percentage of women and girls living with HIV and AIDS has risen from 41% in 1997, to just below 50% today, while in sub-Saharan Africa, 75% of 15 to 24-year-olds living with HIV and AIDS are female. This report shows that it is poor, rural women who are among those hit hardest by the profound health, economic and social impacts of the HIV and AIDS epidemic. We have known for some time that while women and girls are disproportionately affected by HIV and AIDS, they still provide the backbone of community support and play critical roles as agents of change, activists and leaders. However, responses to HIV and AIDS still do not reflect these realities.

Universal access and women's rights: the framework for action

There are only two years left to meet the commitment by governments and donors to 'universal access to prevention, treatment, care and support by 2010' for those affected by HIV and AIDS. The only effective way to realise this commitment is to promote a women's rights-based and gender-sensitive approach.

Our call to action

Our report lays responsibility for making these changes firmly with those who hold power and bear the duty to respect, protect, promote and fulfil rights - national governments, donors and multilateral organisations and, to some extent, civil society. Our report balances this with the essential promotion of women and girls as rights holders, activists and leaders of change.

Prevention, treatment and care and support

In every aspect of prevention, treatment and care and support, women and girls are regularly unable to exercise their rights to access HIV and AIDS services. In this report we detail the barriers for women and girls in terms of prevention, treatment and care and support, and suggest recommendations. We summarise these recommendations below.

1. Prevention

"My husband tested positive before me, but my aunties, together with my late husband, disapproved of condom use, arguing that he had paid up all the bride wealth and therefore [I] was supposed not to deny him sex, unprotected or not. They accused condom use with lack of love for my late husband. Everyone was against me and [I] had no option."
- Zimbabwean woman living with HIV and AIDS

Strategies to prevent HIV infection often fail to take into account the real lives of women and girls. Prevention strategies based on abstinence, being faithful and using a condom ignore the lack of control most women have over their sexuality and the violence women face, particularly within marriage. The development of prevention methods that women can control (female condoms and microbicides) will help, as will education and public awareness campaigns that promote women's rights.

National and donor governments must only fund evidence-based, gender-sensitive prevention programmes that take a rights-based approach, including contributing their fair share to the development of microbicides and increasing access to the female condom and other female-initiated HIV prevention methods.

2. Treatment

"How can I get up at 3am then travel alone during the night to make sure I get antiretrovirals? But a man can easily walk during the night."
- Rwandan woman living with HIV and AIDS

Women are more likely to receive treatment than men, but our research suggests they may be less likely to adhere to it. Reasons given are the lack of privacy and the fear of violence or abandonment if their positive status is discovered. Women also have less access to adequate nutrition, which they need to support their treatment. If access to treatment is to be increased, the particular barriers for women will also have to be addressed.

National governments must develop, fund and implement their national treatment plans and budgets with a strong emphasis on the access and adherence of women and girls to treatment, particularly those in poor and rural communities.

3. Care and support

"We walk for miles and miles in order to reach clients in other homesteads. Once we are there clients expect a lot from us, like food and even money. This puts pressure on our personal resources."
- Namibian care provider

Women living with HIV and AIDS face significant barriers in getting the care and support they need. Leadership of support groups is often dominated by men, with women and girls unable to raise their concerns. The problem is particularly difficult for women living in poverty, who don't have access to the income generation opportunities or state services they need to provide for themselves or their families. Furthermore, women and girls are the major care providers, yet they are seldom paid and the value of this work is rarely recognised.

Donors, multilateral organisations and governments should recognise non-volunteer secondary care providers as workers with a right to a fair wage, training and support.

Cross-cutting recommendations

• National and donor governments should base national AIDS plans on a rights-based analysis of the barriers faced by women and girls in regard to HIV and AIDS prevention, treatment, care and support services. UNAIDS and the World Health Organization must develop clear targets, guidelines and a single strategy to support country governments to do this.

• National and donor governments should consult with women's movements, local networks and movements of women living with HIV and AIDS to ensure funding reflects local priorities. They should also ensure that their policies and programmes do not reinforce inequalities and have the participation of women and girls living with (and affected by) HIV and AIDS at their heart.

• National and donor governments should ensure long-term, predictable funding for the strengthening of health systems, in particular to ensure women-friendly and pro-poor health systems that integrate HIV and AIDS and sexual and reproductive health rights services with HIV and AIDS prevention, treatment, care and support services. This should include adequate staffing, diagnostics, medicines and other provisions to treat opportunistic infections that particularly affect women and girls, such as cervical cancer.

• The Global Fund to Fight AIDS, Tuberculosis and Malaria should improve expertise on women's rights at all levels of the decision-making process, and develop adequate indicators to monitor that country coordinating mechanisms are reflecting the priorities and rights of women and girls.

• Civil society should undertake advocacy and raise awareness around women's rights to HIV and AIDS prevention, treatment, care and support, as well as hold governments to account for the realisation of these rights. They should also increase meaningful involvement of women in leadership and decision making positions in their organisations to ensure issues related to women and girls' rights are prioritised in their work.

Worldwide commitment to the universal access goal - and the universal access process itself - provides an opportunity to strengthen advocacy for women's rights. Moving from recognition of the feminisation of HIV and AIDS to action is a major challenge. To date, this challenge has been met by devastating inaction. The solution requires both political commitment and resources. Those with power must listen to women's priorities, uphold their right to participation, support their empowerment and challenge those who violate their rights.

5.5. Recommendations

Donor governments

1) Donors should increase support to country governments to introduce social protection measures, financial support for primary care providers and build the capacity of grassroots women's organisations, support groups and networks of women living with HIV and AIDS to develop income-generation initiatives, microcredit schemes, local employment and education/ training opportunities for women and girls.

2) Donors should increase capacity-building support to organisations of women and girls living with HIV and AIDS to enable them to develop skills around management, leadership, group dynamics, team building, community mobilisation, advocacy and self-empowerment. Support should also be given to official bodies with a male bias to increase female membership and leadership within their organisations.

3) Donors should increase support and funding for care and support services. They must increase funding to remunerate, train and supervise secondary care providers and to support the delivery of community and home-based care that reduces the burden of care on women and girls. This should include funding programmes to involve men in delivering community and home-based care.

Multilateral organisations

1) The WHO should lead multilateral organisations, donors and governments in recognising non volunteer secondary care providers as workers with a right to a fair wage. To do so, they have to start by revising the current classification of health workers to include all secondary care providers.

2) The WHO must revise its Care Guidelines216 to directly support the remuneration of all nonvolunteer care providers and provide clear guidelines for CBOs and NGOs on how to develop such policies.

3) The UN must ensure that care and support, and the role of women and girls in providing care and support, is recognised fully in international statements and that future declarations on universal access address this issue.

Developing country governments

1) Governments should increase the provision of social protection mechanisms to support women and girls living with HIV and AIDS and primary care providers with rent, children's education, nutritional support, clothes and other costs. Governments should also provide accessible information on available assistance such as disability grants, child support and pensions, and remove customary or civil laws that prohibit women from accessing banks, loans, companies, land or credit.

2) Governments should develop and fund accessible legal support and advice services, including drop-in centres and legal advice clinics, open at times when women can access them and providing information in accessible ways. This must include legal aid for women and girls, and training for legal officers and for national legislatures on women's legal rights around property, inheritance and family law, not only on the law itself, but also around the duty to respect and uphold laws in situations where women's rights have been violated.

3) Governments should increase investment in care and support services, and ensure there are proper systems of referral between community home based care (CHBC) programmes and the public health system; they must ensure that CHBC programmes are incorporated into district health service plans and National AIDS Plans; and they must make sure that Standard of Care Guidelines are introduced or revised within National Health Plans to reduce the burden of care.

Civil society organisations

1) Civil society must create and/or strengthen local, national and regional community and home-based care alliances, to allow care providers to share knowledge, skills and resources.

2) All community and home-based care organisations, and the NGOs that support them, must develop comprehensive policies that recognise and protect care providers' rights and ensure appropriate pay for non volunteer care providers.

3) Home-based care organisations must ensure regular training for all secondary care providers by an accredited trainer on home-based care, with full access to information on vertical transmission, post-exposure prophylaxis, adherence and treatment literacy. This training should also be targeted at primary care providers directly, building on secondary care providers' skills to provide outreach training.

6. Conclusion

"[HIV and AIDS represents] the most ferocious assault ever made by a communicable disease on women's health, and there is just no concerted coalition of forces to go to the barricades on women's behalf."217
- Stephen Lewis, former UN Special Envoy on AIDS in Africa

The HIV and AIDS pandemic is not just a health concern, it is an issue of human rights - and it is increasingly also an issue of women's rights. This report has highlighted how the denial of women's rights and gender inequalities time and again undermines universal access to prevention, treatment, care and support. Growing awareness of the gender dimensions of HIV and AIDS has created an important opportunity to address the disproportionate impact that the pandemic is having on women and girls. Formal commitments to universal access - and the universal access process itself - is a powerful framework from which to advocate for women's rights. However, the lack of global targets addressing women's rights and empowerment, and the absence of consistent country-level targets, makes the move from merely recognising that HIV and AIDS has a female face, to actually acting on it, a major challenge. To date, this challenge has been met by a devastating state of inaction.

This report recommends the following immediate actions:

Donor governments

1) Donor governments must consult with women's movements, local networks and movements of women living with HIV and AIDS to ensure donor funding reflects local priorities of the people infected and affected by HIV and AIDS. They must also ensure that their policies and programmes do not reinforce inequalities.

2) Donors must only fund evidence-informed, gender-sensitive programmes that take a rightsbased approach, including contributing their fair share to microbicides and increasing access to the female condom and other female-initiated HIV-prevention methods.

3) Donor governments must ensure long-term, predictable funding for the strengthening of health systems, in particular to ensure women-friendly and pro-poor health systems that integrate HIV and sexual and reproductive health rights services with HIV and AIDS prevention, treatment, care and support services.

Multilateral organisations

1) UNAIDS and the World Health Organization must develop clear targets, guidelines and a strategy to support country governments to develop a rightsbased and gender sensitive analysis for scaling up HIV and AIDS action.

2) The Global Fund to Fight AIDS, Tuberculosis and Malaria must improve expertise on women's rights at all levels of the decision-making process and develop adequate indicators to monitor that country coordinating mechanisms are reflecting the priorities and rights of women and girls.

3) The World Health Organization should lead multilateral organisations, donors and governments in recognising secondary care providers as workers with a right to a fair wage. To do so, they have to start by revising the current classification of health workers to include all non volunteer secondary care providers.

Developing country governments

1) National governments must base national AIDS plans on a rights-based analysis of the barriers faced by women and girls in regard to HIV prevention, treatment, care and support services. This must have the participation of women and girls, living with and affected by HIV and AIDS, at its heart.

2) National governments must provide training and funding and put systems in place to ensure that adequate staffing, diagnostics, medicines and other provisions are made to treat opportunistic infections that particularly affect women and girls, such as cervical cancer.

3) National governments must develop, fund and implement their national treatment plans and budgets with a strong emphasis on women and girls, particularly women and girls in poor and rural communities, in order to achieve universal access to treatment.

Civil society organisations

1) Civil society must ensure that a women's rights approach is at the heart of their HIV and AIDS programmatic interventions and political advocacy.

2) Civil society must create and/or strengthen local, national and regional community- and home-based care alliances, to allow care providers to share knowledge, skills and resources.

A look to the future

Scaling up towards universal access demands a new approach that goes beyond mere rhetoric to make a real difference on the ground. Indeed, only a few years ago, the very concept of universal access was not even on the radar of governments, donors or multilaterals. Now, it represents an international public commitment to which the majority of governments have agreed. While the current reality of implementation may be different, the process itself has the potential to effect significant change.

The next step is for governments to commit to gender sensitive, measurable and time-bound indicators and targets for scaling up access in all areas of prevention, treatment, care and support.

With political will, proper resources, and the cooperation of multiple stakeholders, we can stem the course of the pandemic. The lives of millions of women and girls depend on it.

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