The International Community of Women Living with HIV/AIDS (ICW) is the only international network run for and by women living with HIV infection and AIDS (hereafter referred to as "positive women"). We are a network of women who educate, support and advocate for one another on a local, national and global level. The issues raised below are based on experiences of women in the network. In an anecdotal way they reflect the reality of many positive women's lives.

We often hear women say that after being diagnosed with HIV they feel that they become public property, that everyone else has an opinion on how they should behave. This is especially true in pregnancy. Doctors and healthcare workers often have moral and discriminating attitudes towards us. This often interferes with the standard of health care and information that we receive to make informed choices.

ICW is planning to undertake a project looking at the experiences of positive women in relation to their sexual and reproductive rights. Many women worldwide are denied these rights and freedom of choice. However, within the context of reproductive rights, positive women are often further violated specifically because they are HIV-positive: they are being denied choice, information and support to have or not have children. The project aims to raise awareness among positive women about their rights and to collect information that will help women, their partners and their healthcare workers to understand the issues. The research will be undertaken by positive women working alongside experienced researchers and will develop and strengthen women's networks by providing training and skills building.

African cultures, like many others, expect women to have children for both social and economic reasons; childless women face a great deal of stigma. Being diagnosed HIV-positive may therefore intensify a woman's desire to have children if she is not yet a mother. On the other hand, most positive women are judged negatively if they choose to conceive; this may even lead to ridicule and non-acceptance within support groups, leading the women to leave the groups in a state of stress and isolation.

Positive women may also be unable to prevent pregnancy. For example, there is a good support system in Uganda that emphasizes positive living for those with HIV/AIDS; it stresses that positive women in principle should not have children. The only ways to do this, however, are by abstaining from sex or using condoms - unrealistic options when women are not empowered in terms of their own sexuality - or by using contraceptives, which are often unavailable in rural areas. In reality, therefore, positive women continue to become pregnant as they have few tangible choices to prevent pregnancy.

In Brazil, doctors often refuse to deliver the baby of a positive woman as they have not been trained in handling these deliveries. Many positive women therefore wait for many hours during labour before staff can be found to give assistance.

Many women in ICW believe that there should be no mandatory or routine testing of pregnant women or their newborn babies while discrimination against people living with HIV/AIDS still exists. We look forward to the day when an HIV test can become routine and a woman will receive nonjudgemental advice and information on how to care for herself and her unborn baby. We need urgent research on safe methods and treatments to reduce the risk of HIV transmission during pregnancy, delivery and breastfeeding, safe for both the baby and the mother.

Mothers may also wish to protect their children: in some instances, children are afraid their parents may die at any time, even creeping into their rooms at night to reassure themselves that their parents are still breathing. It is a chicken-and-egg situation. Without being open about illness it is very hard to make plans for the future; however, many parents do not want to worry their children until they have a plan.

Positive women often need time and help in coming to terms with their own diagnosis before they can begin to tell their children. When they are ready to talk with their children, adequate and ongoing support is needed. Our key contact in Uganda realized that she had not opened up to her children about her disease, which made her feel guilty and anxious. She received training in using "memory books" as a way of recording information and family history, enabling her to broach a very difficult subject. She also received a small grant to train other women in using the memory book so that they will be confident to use it with other women in their locality.

Another difficulty is telling a child s/he is HIV-positive. While the children are well, parents do not want to worry or scare them. If they become ill, parents want to care for them as they would for any other child.

For many women, having children is the most important thing in their lives. There are no guarantees in life, positive women are acutely aware of this. Women living with HIV/AIDS need information and support to provide a safe, loving and caring environment for themselves and their families well into the future.

Jo Manchester, ICW, Livingstone House, 11 Carteret Street, London SW1H 9DL, United Kingdom; Tel: 441712221333; Fax: 441712221242; e-mail: icw@gn.apc.org