The urge to crawl inside my TV WORLD, 05-01-1995 I tested positive in 1992. Even living in San Francisco, I had never met another woman with HIV. I felt terribly alone. Not long after that, the 8th International Conference on AIDS was held in Amsterdam. I watched the news vigilantly. There was no cure, but one night I caught a news brief on TV. Fifty women from all over the world took the stage and proclaimed that they were women living with--not dying from--HIV. They had just formed a network called the International Community of Women Living with HIV/AIDS (" ICW"). As I stared at each face, I felt an overwhelming urge to crawl inside the TV set and join them. Reportback from South Africa In March, I travelled to Cape Town South Africa to participate in the Third International Pre-Conference for Women Living with HIV/AIDS (sponsored by the ICW) and the 7th International Conference for People Living with HIV/AIDS co-hosted by the Global Network of People Living with HIV/AIDS (GNP+). Here are excerpts from my report, with thanks to the many individuals who contributed their notes. Third International Conference for Women with HIV/AIDS On March 4th, 1995, over 150 HIV+ women from over 40 countries gathered in Cape Town, South Africa, for the 3rd International Conference for Women Living with HIV and AIDS. The majority of the women (52%) came from South Africa and other African countries. The rest came from Europe (20%), North America (10%), Latin America and the Caribbean (10%) and Asia Pacific (8%). Over the next two days, the ICW held plenary sessions, a business meeting, regional meetings, elections, and a number of issue-specific workshops where women were able to share experience useful information, learn from one another and realize that they are not alone. As one woman expressed: "It gives me a good feeling to know that no matter how bad or hard the struggle gets, there is always a sister somewhere out there sending out positive energy to you, praying that you will make it." Positive women speak out Dr. Nkosazana Zuma, South Africa's Minister of Health, gave the opening speech, welcoming us all to South Africa. She stated that with support of President Nelson Mandela she is working to see that HIV be addressed by all sectors of government. Then a panel of HIV+ women spoke about their regions. A 22 year old lesbian from South Africa tested positive at the age of 17. She had experienced horrific isolation and commented, "I had to lose a lot before I could be who I am." Today she has made the fight against HIV and AIDS a huge part of her purpose in living. A single woman in her early thirties from the Caribbean reported that there is now a growing network of HIV+ women in Latin America and the Carribean. A married mother from Australia pointed out that while Asia now has the fastest growing rate of infection in the world, there were only a handful of women from the Asia/Pacific region present at the pre- conference. Outreach in her region is very difficult due to the lack of information and the incredible stigma attached to the disease. A woman from Singapore is the only woman who has ever gone public in her area. She took advantage of the chance to network saying, "I may be alone in Singapore, but I'm not alone here." A woman from Germany said ICW members in her region are doing a scan of Italy, France, Spain, Portugal and Ireland to assess the needs of women there. Despite the perceived plethora of information, access to services in Europe is still limited for most HIV+ women. A woman from the United States then spoke about women's AIDS projects going on in the USA and Canada, including a new regional ICW group forming in Canada, and the WORLD newsletter which works closely with the ICW to disseminate information worldwide. Finally, a woman from Malawi shared that she and other African women were feeling proud and strong to have the conference in Africa with widespread participation by African women. She reported that in Africa the ICW women have been coming out and mobilizing. African women speak out On the second day of the conference, a panel of African women spoke. A woman from Tanzania opened this plenary session discussing the role of women in African society, where she said women are often treated as second class citizens. She described polygamy as the norm, said that violence against women is common, and that women are taught early on to never refuse sex from their husbands. A woman from the Ivory Coast said that HIV+ women in Africa suffer discrimination on all levels: health, education, and employment. Many women spoke of the lack of resources, and of socio-economic dependence on men. Women are denied equal access to education which perpetuates the inequality. When women can not get good jobs, they feel powerless and may be forced into prostitution to survive. When a woman's husband dies, inheritance laws often deprive her of his property. In Zimbabwe we were told women are afraid to seek treatment for any sexually transmitted disease (STD) because they are often questioned and judged about how they acquired the disease. A woman rarely has the power to refuse sex or negotiate condom use with her husband. Greater outreach to rural areas is also greatly needed. A woman from Botswana said women lack access to information because it is usually in English (which many African women do not read or speak). A Kenyan woman spoke about pregnancy in African society where motherhood is glorified, and makes women recognized by society. Yet while women are praised for giving birth, they are given no rights of their own. When men move to urban areas, women inherit the task of caring for the children alone. Nevertheless, women who can't have children face a very difficult situation. Finally, a woman from Botswana spoke about children who suffer stigmatization by friends when a parent has HIV. When parents become ill, older children often end up caring for the parents and the younger children. We must care for orphans and educate all children so that they can avoid getting HIV. South African Conference Workshops During the two day conference, women participated in a series of workshops: Sexual abuse/harassment/violence At least three women disclosed that they had been directly infected during a rape. Others said that the low self-esteem they experienced as a result of sexual abuse had led them to engage in high risk behaviors. Some said they were afraid to ask men to use condoms. Some HIV+ women stay in abusive relationships because they are afraid no one else will love them. Others stay because and abusive partner threatens to disclose her status if she leaves. One woman's husband slept with a gun under his pillow to threaten her. Economic dependence is another reason women stay in abusive relationships. Women are frustrated that laws don't protect them or their children from violence. Some are teaching their boy children to respect women. Other strategies include reassuring women that they are not to blame for the violence of others. Overcoming Isolation Women discussed the tendency to self-isolated due to fear of rejection by friends or family members. A woman from Kenya shared that when she tested positive, her partner abandoned her seven months pregnant, with only the kicking of her baby to keep her company. An African woman residing in Scandinavia fears being deported. A woman from Zimbabwe, took her sick child to the hospital at 3 p.m. only to be refused services because she had AIDS. The baby died in her arms 32 hours later. Job discrimination was another theme. A woman in England had lost her job after it was deemed inappropriate for her to do home care in 1987. A Malaysian woman is afraid to disclose to her current employer. A South African woman was afraid to tell her husband or co-workers because the people around her believe AIDS is "a white man's disease." Pregnancy Women from poor countries expressed frustration that they don't have access to information or treatments available in more developed countries. In Africa, for example, women have little or no access to AZT, pre- natal vitamins, basic health care, or adequate nutrition, despite a recent study from Malawi that shows a connection between malnutrition and perinatal transmission of HIV. While it is recommended that HIV+ women not breast feed, in some countries it may be the only source of nutrition for a child. Most African women don't have access to formula and even if they do, they can't always be sure that the water they mix it with is safe for consumption. Health Issues Many health concerns were identified by the women: Treatment by health providers: lack of respect and sensitivity doctors giving no/poor information about treatments/symptoms not getting to ask question doctors not taking symptoms seriously lack of training re HIV+ women being labeled a "difficult" patient being treated medically as if women are like men breasts Lack of Services: no access to pap smears during regular check ups no access to appropriate health care in rural areas Gynecological problems: pre-menstrual syndrome irregular/painful/missing periods other STDs (chlamydia, herpes...) reproductive problems ovarian cancer/ovarian cysts vaginal thrust/yeast infections pregnancy and infertility contraceptives/side effects poor memory/illness with periods Additional Concerns: fevers, headaches, dry mouth skin problems breast cancer body image mental/spiritual health One woman's doctor had recommended she get a mastectomy. (He presumed she would not be having children, so she didn't need her breast.) Several women expressed the need for regular gynecological care as preventive medicine, before problems arise. While most women only see a western doctor for treatment, nearly every woman uses both western and traditional treatments for her only well being, including herbs, aroma therapy, massage and so on. Many said the western treatments were too toxic so they preferred the more natural remedies. Skin problems were another frequent concern. Women discussed the need to "shop around" for health care to find a doctor that will work with you, not dictate to you. Women from the U.S. and Africa alike commented that once some providers know you're HIV+ they don't put as much effort into treating symptoms, as if they feel you're going to die anyway, so why bother. Some noted that absence of women from clinical trials, while others raised concerns about trials that exploit women in poor countries with little access to care. Suggestions for improving our health We need our doctors to be our partners, not our saviors We need preventative care. Study relation between HIV and menstrual irregularities Prepare a list of question to discuss with your doctor. Take a friend. Women need to learn how to shop for a doctor/healer Demand that all clinical trials include women of varying ages from adolescent to older. Teach women to negotiate condom use to avoid further infections of other STDs or HIV strains. Provide information in all languages. Use networks; share info. Require retraining for health care workers to deal with women & HIV We need information about home remedies/practical solutions Get together in local groups to share information and support each other Use the Internet and e-mail to access and share information Women must be encouraged to take responsibility for their own health Empower women to be assertive in challenging their doctors. Caring for Ourselves and Others In this workshop, women discussed their roles as care providers and the difficulties we often have caring for ourselves. Many women expressed frustration and over not having the energy or support needed to care for themselves and their children. Strategies for dealing with stress included meditation, relaxation, finding people to talk to, exercise, engaging in meaningful work, and learning to love oneself. Loss and Bereavement Many positive women are dealing with multiple losses: not just the loss of a partner or child but also loss of self-esteem, jobs, sex, friends, a future (watching children grow up) and inner self. A woman from England said that every time someone dies she fears what will happen to her. A woman from the United States spoke of the loss of innocence, For many there is anger mixed up in the grief. Children and HIV Children often know a mother's status even before she discloses. They may be told by another family member or may notice non-verbal clues. It is devastating for children to find out from others. In many parts of the world, HIV+ children may go undiagnosed or misdiagnosed. Women worry that their uninfected children may be denied health care or vaccines by providers who assume the child is positive (based on the mother's status). Children feel a tremendous emotional burden. Strategies for helping children deal with HIV included educating people in the child's life about AIDS (including the child), counseling/therapy, and speaking honestly. Closing Session The closing session brought us back together again. Of course, two days wasn't nearly long enough. For many, it was the first time they had seen another HIV+ woman, let alone room of 200. Until we see a cure for AIDS, HIV+ women can bridge the isolation and support one another. As one woman said: "This has given me new energy so I can keep on working when I'm back home." The International Community of Women Living with HIV/AIDS The ICW is the only international network run for and by HIV+ women. There are 15 Key Contacts worldwide (elected at each pre-conference), a Coordinating Office in London, and an ICW liaison to the 1996 International AIDS Conference Vancouver. ICW Coordinating Office Joanne Manchester, Kate Thomson, Leigh Neal 2nd floor, Livingstone House, 11 Carteret St., London, SW1H 9DL U.K. Tel:44-171-222-1333, Fax: 44-171-222-1242 1996 Vancouver Conference Liaison for the ICW Cheryl Brown, POB 93655, Nelson Park P.O., Vancouver, BC, Canada, V6E 4G7 Asia/Pacific Siti Sarnah bte Dhiffy Apt. Blk 839, No. 05-304, Yishun St. 81 Singapore 2776 Tel: 65-752- 9700 Narumon Buayen Thai-Australia Northern AIDS Prevention & Care Programme 14/10 Huay kaso Road Chiangmai 50330, Thailand Tel: 61-8-362-1611, Fax: 61-8-363-1046 Vivienne Munro AIDS Council of New South Wales PO Box 350, Darlinghurst, NSW 2010 Australia Tel: 61 2 206 2000, Fax: 61-2-206-2069 Caribbean Wendy Mejaries Community Action Resource (CARe) 101 Oxford St., Port of Spain, Trinidad Tel/Fax: 1-809-625-0632 North America Yecenia DeJesus 245 Bennett Ave., #3B New York, NY 10040, U.S.A. Tel: 212/926-4072, Fax: 212/296-2163 Cindy Robins POB 32593, 9665 Bayview Ave. Richmond Hill, Ontario, L4C 0A2, Canada Tel: 905/770-0699, Fax: 905/770-7874 Martina Clark 548-B Clayton St., San Francisco, CA 94117, U.S.A. Tel: 415/861-8799, Fax: 415/863-6425 email:martina@itsa.ucsf.edu Latin America Lorena Loyola Droguett Socrates 1924, Villa Raabco Malpu, Santiago, Chile Tel: 53-2-10923, Fax: 56-2-639-5040 Nair Soares De Brito E Britto Rua Santo Irineu, 285 Apto 64 Vila Mariana, Sao Paulo Brazil, CEP 04127-120 Europe Claudia Fisher Deutsche AIDS Hilfe Dieffenbachstr 33, 1000 Berlin 61 Germany Tel: 49-30-6900-8739, Fax: 49-30-6900-8742 Rosemarie Rojas PG Syd, 5oderg 13 S-21134 Malme, Sweden Tel: 46-40-79-161, Fax: 46-40-78-929 Elizabeth Da Paz SIDA Info Service 190 Bd De Charonne, 75020 Paris, France Tel: 44-93-1655, Fax: 44-93-1600 Africa Jeanne Kouame Association Lumiere Action 64 BP 2113 Abidjan 04, Cote D'Ivoire Tel: 225-24-30-13, Fax: 225-24- 31-19 Beatrice Were PO Box 4485, Kampala, Uganda Tel: 256-41-267-012/3, Fax: 256-41-62728 Winnie Chikafwmbwa NAPHAM, P/Bag 355 Capital City, Lilongwe 3, Malawi Tel/Fax: 265-782-230 Clark, Martina, The urge to crawl inside my TV. , Contemporary Women's Issues Database, 05-01-1995, pp 1+.