ICW Introduction and History

The International Community of Women Living with HIV/AIDS (ICW), a registered UK charity, is the only international network run for and by HIV positive women. ICW was founded in response to the desperate lack of support, information and services available to women living with HIV worldwide and the need for these women to have influence and input on policy development. ICW was formed by a group of HIV positive women from many different countries attending the 8th International Conference on AIDS held in Amsterdam in July 1992. HIV positive women shared stories and strategies for coping and devised action plans for the future. An important achievement at this first ICW pre-conference was drawing up the "Twelve Statements". These statements relate to the issues and needs facing all women living with HIV worldwide and form the basis of our organisation's philosophy. During this meeting, the women agreed that they did not want to lose this momentum and ICW was created.

Current activities

ICW's Vision is:

A world where all HIV positive women:

• Have a respected and meaningful involvement at all political levels, local, national, regional, and international, where decisions that affect our lives are being made;
• Have full access to care and treatment; and
• Enjoy full rights, particularly sexual, reproductive, legal, financial and general health rights; Irrespective of our culture, age, religion, sexuality, social or economic status/class and race

ICW's Purpose is:

ICW is an international network run for and by HIV positive women that promotes all our voices and advocates for changes that improve our lives.

ICW's Values are:

• Mutual Respect, Honesty, Integrity and Confidentiality: As a network of women living with HIV throughout the world, ICW is based on the mutual respect, honesty and integrity of its members, as well as on the assurance of confidentiality.
• Commitment to advocacy: Ensuring that women living with HIV have a voice and meaningful participation in relevant decision and policy-making bodies on issues important to our lives.
• Accountability: ICW and its policies should aim to be for the benefit of all members regardless of culture, age, religion, sexuality, social or economic status/class and race. ICW must be accountable to our members for our actions, use of funds, and for fulfilling any of our legal obligations.
• Self-determination: ICW values the transformative power of women living self-determined lives. Such action is essential to attainment of all of our human rights. We value peer support and mentoring as ways to enable our peers to become more self-determined in their lives.

Over the last sixteen years, the rate of HIV infection among women has rapidly increased. Women are very much at the heart of the epidemic.

The External Realities

• Women now account for over 50% of global infections.
• There are at least 19.2 million women around the world who are living with HIV/AIDS.
• In 2002, more than 1.2 million women died as a result of HIV infection.
• The number of children infected continues to expand.
• In some places, girls are the fastest growing group of people newly infected and may outnumber their male counterparts 2 to 1.
• Gender violence and inequalities increase the levels of poverty, stigma, discrimination, oppression and isolation experienced by HIV positive women

Sources: UNAIDS/WHO AIDS epidemic update: December 2002 and Feinstein and Prentice: Gender and AIDS Almanac, UNAIDS: 2002 available on line

It is the neglect of HIV positive women's issues in all parts of the world that has very much kept ICW alive as the only international network run by and for HIV positive women. Currently we have over 6000 members living in 128 countries around the world.

Our Organisational Achievements:

• Creating a sense of solidarity between women living with HIV/AIDS
• Giving HIV positive women a unified voice in policy forums by working with them on issues of concern before and during conferences
• Ensuring HIV positive women speak at major HIV/AIDS conferences by co-organising such events and ensuring women have the opportunity to speak
• Providing training for positive women's empowerment in Africa and Latin America that is inspired, planned and run by positive women for positive women
• Providing skills building workshops at conferences for instance in sexual and reproductive rights and microbicides
• Completing participatory research into HIV positive women's concerns and needs around reproductive and sexual health
• Producing written resources inspired by HIV positive women, incorporating their voices, for other HIV positive women
• Establishing an organisational structure and relationships between HIV positive women that reach out to HIV positive women at local levels.

Our current strategy seeks to build on these achievements and address the key challenges we face.

Our Challenges

We are hugely over-stretched and under-resourced. Many of our original founders have now died. This has meant that we have faced various challenges. These have included:

• Articulating a clear vision and positions on the issues of most concern to HIV positive women
• Maintaining effective communication processes across the network and with external agencies
• Organising ourselves in ways that take advantage of our main resource. This is the voluntary work that so many members are willing to contribute to the network
• Defining specific priorities that can be achieved with the few staff and scarce financial resources available to the network.

As we address these challenges, we strongly believe that ICW will position itself to more effectively bring together our collective knowledge and skills so that we can recommend strategies and activities that are relevant to the growing number of women faced with the epidemic.

Membership

Affiliation

ICW works extensively with many partners. Our services are also provided to and through affected individuals and families; support groups; other groups and networks; agencies (such as United Nations, World Health Organisation, European Commission); non-governmental and AIDS service organisations; and governments on an international, regional, national and local level. As one ICW member said, "The best thing about the network is that positive women are supported by other positive women so that they never feel alone."

ICW's Structure

• Eight staff members run our co-ordinating office in London.
• The office liases with three Regional Co-ordinators for Southern Africa, Eastern Africa and the Asia Pacific region and two Global Advocacy Officers on sexual and reproductive rights and access to care, treatment and support.
• We also have an International Steering Committee (ISC) made up of 16 HIV positive women from around the globe.
• These ISC members cover five regions:
  • Africa - with more than 29.9 million HIV positive adults and children estimated*
  • Asia/Pacific - with 7.2 million HIV positive adults and children estimated*
  • Latin America/Caribbean with 1.9 million HIV positive adults & children estimated*
  • North America - with 980,000 HIV positive adults and children estimated*
  • Europe - with more than 1.7 million HIV positive adults and children estimated. *
• A Board of Trustees based in London has financial and legal responsibilities for ICW.

*Source: UNAIDS & WHO Report on the Global HIV/AIDS Epidemic, December 2002

ICW Growth

• ICW continues to grow as a worldwide network of HIV positive women.
• Since its inception in 1992, ICW has grown from an organisation of 40 members to reaching a membership of more than 6000 HIV positive women living with HIV from over 128 countries.

Coming from every corner of the globe, from many varied cultural, social, economic and academic backgrounds, an extraordinary range and uniquely qualified team of experts - women living with HIV/AIDS - pool efforts to combat the epidemic. The women most directly involved with ICW's work live with the reality of this disease in every aspect of their lives. They are committed to helping other women through providing outreach and support and information dissemination. We estimate that each ICW member outreaches to at least 10 other HIV positive women, with a total estimate of 10,000 - 100,000 individual women with HIV receiving some type of support and information connected with ICW. ICW members have set up support groups, networks and organisations in their local areas.