An introduction to the ICW

There on the TV were a group of women, all living with HIV, standing in front of the world saying they existed and were going to do something about the invisibility of women in the epidemic. These were the founders of ICW. I wanted to crawl inside the TV and touch them.’ (Martina Clark).

During the VIII International Conference on AIDS held in Amsterdam in 1992, some of the attending HIV+ women decided that it was time to do something to address the lack of support and information that women with HIV suffered. They started by meeting together to share experiences and they found that although they came from different parts of the world they had common features with which all them identified themselves. So they decided to put in place a mechanism to communicate and share information (adopted networking as a structure), and they identified 12 key points that should be addressed so that to make meaningful changes in the trend of the epidemics. It is mportant to highlight that these 12 statements are still prevalent nowadays and are the roots that feed ICW’s eistence and its claims.

This is how the International Community of Women living with HIV/AIDS (ICW) was born, and the way in which this birth took place broadly determines the mission of the network, which consists in improving the situation of women with HIV through empowerment, this meaning the capacity to manage our own life in all its aspects, by providing the information and training necessary to take informed decisions about the issues affecting our lives.

The vision
Our vision is one of a world where all HIV positive women:

• Have a respected and meaningful involvement at all political level, local, national, regional and international, where decisions affecting our lives are taken.

• Have full access to care and treatment, and

• Enjoy all their rights, particularly sexual, reproductive, legal, financial and general health rights.

Irrespective of our gender identity, sexuality, culture, age, religion, social or economic status/class or race. After adopting a human rights framework as a strategy, we established in our Strategic Plan 2003-2007 three basic areas upon which we were to focus our work in order to advance efficiently towards completing our mission:

1) Gender equity
Gender inequalities in the field of individual relationships, in community, in the workplace and at all levels of decision making contribute in keeping women at a poverty level, and both factors have a devastating impact in our rights and place us in a situation of higher risk to HIV infection and also to its effects in our lives once we get infected. For that reason, in the ICW we recognize the need to address gender inequalities and poverty to reduce the impact of the epidemics in HIV+ women and their families.

2) Access to care, treatment and support (ACTS)
Access to ARV drugs can significantly reduce the numbers of women needlessly dying because of HIV. For that reason we consider it absolutely necessary to have universal access to care, treatment and support (ACTS) for all HIV positive people, irrespectively of sex, age or life-style.

Through the experiences gathered among our members, throughout the world, we have evidence showing that women have great difficulties in receiving treatment access for any health condition, and given the stigma surrounding HIV it is likely that access to ARV is more challenging for women and girls.

ICW considers HIV+ women are in the best position to understand the barriers in accessing care and treatment, so we have proved that our participation is required to develop and articulate ways of promoting access to women with HIV around the world. This should include that HIV+ women and girls are trained and employed to act as treatment activists and distributors.

3) Right to meaningful involvement in all decisions affecting our lives
More than 10 years have passed since representatives of 47 governments signed in Paris the GIPA principle, recognizing that the involvement of people infected and affected by HIV was essential to an ethical and effective response to the epidemics. Although this principle is broadly accepted, our experience informs us that the perspectives and voices of people with HIV, particularly women and girls are continually being ignored.

What do we mean by a ”meaningful involvement“? Considering that people with HIV have a first hand knowledge of our needs, ICW thinks that organisms, groups and individuals working in projects aiming to address these needs should work in a participatory, interactive and creative way with HIV+ women, as well as other people working directly with community members and other groups in such a way that we can create services to fit people instead of people to fit services.

After stating that women between 15 and 24 years are at greater risk of getting infected with HIV, in those areas more affected by the pandemics, we have focused specific attention to young women a transversal axe in all three areas of intervention, and we promote their full involvement to all levels of our work, including ICW global governance body (International Steering Committee), so that they are able to speak by themselves within and outside the network.

The values on which we work
In order to be able to work in the advancement of our vision we think that one of our most valuable documents is that containing the set of values we have adopted as a reference, and to which we turn to at any time to be used as a basement on which we build our actions:

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 gender identity, sexuality, culture, age, religion, 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.

Specific challenges we face
In the realization of our work we find multiple challenges that are at times a consequence of gender inequalities we face and the cause that makes our work necessary. These challenges have to do basically with four aspects of our action:

• For being what we are: We are women, with multiple tasks in society; we are advocates, caregivers, friends, mothers/daughters/sisters; we are HIV+ and sometimes we get sick, and in some occasions we overlook our own health and care to fulfill the exigency of our multiple roles. All this usually gives us more stress and leads to exhaustion due to the tribute we must pay both physically and mentally.

• For the way we work: Networking provides many benefits, but at the same time its flexibility and lack of structure makes it necessary to dedicate great amounts of energy to maintain our commitments in due time. The small numbers of staff members and the amount of voluntary work add an additional burden to the stress and concern for keeping the deadlines, which is worsened by the difficulty to raise core funding for the network and by the little importance accorded to the specificity of HIV and women issues. The focus of our work lies in the involvement of our members, so we dedicate much time to the detection of key issues, identifying needs; we develop alliances, share experiences, interests and agenda with other organizations. The biggest part of this work is done behind the scenes and becomes invisible and that is the reason why it is not always easy to explain to donors and other organizations the importance of the work we do.

• For the way others see us: We often realize that we are not respected, that we are not trusted in what we do or we are criticized for our way of working or for our different rhythm, and that results in the general undermining of our work. For instance, there is an overall lack of respect for the process of participative work, that take longer, more effort and funding, but can be very effective in terms of the sustainability of what we do.

• For our relationship with other structures: Most of the official (and other) organisms are thought to address men’s needs while following male perspectives, and that is why in our work in favor of HIV+ women’s rights we have to face the challenge of questioning the patriarchal structures where we have to act. Many of the organizations which we work with are managed by men and their ways of working are ruled by male rhythms and tempos, so we see how other approaches not aligned to those established are judged and despised.

Having these challenges in mind, one very important thing is that we continue having confidence in that the achievement of ICW’s goals will be useful for strengthening the links among HIV+ women globally, which allow us to advocate for common issues that affect us, and especially to speak by ourselves. The fact that we establish a collective agenda enable us to increase our individual capacity to make decisions at all levels while improving our capacity as a group to defend the issues that affect all women with HIV and to fight against gender inequalities globally.

Our Strategic Plan for 2003-2007 aims to offer all ICW members broad guidelines of action, providing enough space for it to be adapted to their specific regional context and needs. It is meant to inspire HIV positive women to act and create a world where ICW’s vision becomes a reality as well as to encourage others to work with us in building a world where all women can live a life of dignity.

How to become part of ICW
Any HIV + woman can become a member of ICW by filling the membership form that can be downloaded at our website (www.icw.org) and sending it to our London office. Also, all ICW members can participate at different levels in the network, getting in contact with their country or regional representative or with the international support office in London (contact details can be found on our website, as well as information on the several projects currently in place in different parts of the world).

Maria José Vazquez

ICW ISC Chair

e-mail: mjvanav1@auna.com

International Support Office

Unit 6, Canonbury Yard,

190a New North Road,

London N1 7BJ, London, UK

Tel +44 20 77040606,

Email info@icw.org, Website www.icw.org

EATN - European AIDS Treatment News, Volume 15, I – Spring 2006

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