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Newsletter, Women Organized to Respond to Life-threatening Diseases (WORLD), January 1998

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1998-01

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Newsletter from WORLD with columns by women affected by HIV and AIDS.

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jhp000289
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jhp000289. Shelley Bristol Papers, 1993-1998. MS-00398. Special Collections, University Libraries, University of Nevada, Las Vegas. Las Vegas, Nevada. http://n2t.net/ark:/62930/d1tt4jd5h

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N u m b e r 8 1 W(?IHILID? Women Organized to .Respond to .Life-threatening Diseases January 1998 Tw e n ty w o m e n from 10 cities across the U.S. came to San Francisco in December 1997 to learn howto re-create WORLD?S HIV Univesity in their communities (see pp. 2-3). Here is one of their stories... Living a W ORLD of difference by Angie ("Ms. Kansas City") In 1995, after suffering severe flu?like symptoms for two weeks ac?companied by a 15 pound weight loss, I dragged myself to the doctor. Fortunately, I had a new job and I had just received my new insurance card. I figured I could go right in to see a doctor, get a flu shot, and be able to return to work. But as the doctor talked and asked a lot of questions, I knew it was not going to be that easy. She explained that she was going to run all these tests, and she would include an HIV test. I'd had one the year before, and it was fine. "It will be OK," I told her. " I don't sleep around. I just have one man in my life." June 30,1995 at 3 P.M. is a date and time I will always remember. The look on my doctor's face told me it was not good news, whatever it was. What she said to me just could not be right; she told me that I had tested HIV Positive. I wasn't gay and I didn't sleep around. That's all I had ever heard about the disease, so how could this be? Then she asked me, "Are you sure about who you slept with?" And then I had to face something I had put in the back of my mind. Yes, I had been with someone else. But he had forced me to have sex with him. (Yes, he raped me.) How many times do you hear, "Why didn't you say something?" But being raped is a lot like being HIV?positive. Society has a way of putting you in the position of being at fault. So I did what so many women do. I thanked God he did not kill me, took a long shower, put it behind me, and went on. Little did I know it would never be behind me. After my partner tested negative, it was in my face how I got infected. Since that day the words "You are HIV-positive" rang in my ears. I have learned so much and done a lot as well. I've spent a lot of time becoming edu?cated about this disease, and I have been educating women. I facilitate an HIV support group for women and I work on a crisis hotline for women who have been raped. My next project is to help organize an HIV University like WORLD'S in Kansas City, Kansas, so you'll be hearing more from me! I have had various T-cell counts and been on several different drug com?binations. (It took a while to figure out which one would work for me.) Oh yes, HIV is truly something to live with, but I am happy to know I can live. I am excited about the changes in my life. I have had bad ones too, but right now it's working. On June 30,1995 my T-cell count was 234. On triple combi?nation therapy it went up over 1,000. I have a lot to be thankful for and I am. WORLD helped change my life. At a retreat on a hill in Healdsburg, I had a chance to meet some beautiful women (inside and out) living with HIV and AIDS, and to share life experiences, hopes and dreams. The next one is in April. Will I see you there? I want women to know that there is life, love and hope after finding out. It is a joy to share with other women through WORLD that today it's OK to say that I'm a woman living with HIV. To help organize an HIVU, see if there?s one starting in your area (p. 3). For an application to the next retreat, call WORLD. Facts about Women $ AIDS Source: "CDC Update," July 1997 ? From June 1982 through Decem?ber 1996, CDC received reports of 581,429 cases of AIDS among persons of all ages and ethnic groups in the U.S., including 85,500 cases (15%) among women. ? The proportion of total AIDS cases in the U.S. attributable to women is growing. In 1985,7% of AIDS cases were among women; in 1996,20% were women. ? In 1994, AIDS cases in women attributable to heterosexual transmission surpassed the number due to injecting drug use. ? HIV infection is the third leading cause of death among women ages 25-44; it is the leading cause of death among Black women in this same age group. ? In 1996, there were 69,151 AIDS cases reported to CDC. Of these, 13,820 (20%) were reported among women. ? AIDS rates for Black and Hispanic women are 17 and 6 times higher than for white women. In 1996, 59% of women diagnosed with AIDS were Black; 19% were Hispanic. For more information The CDC will fax you statistics for free. Call "NAC-FAX" at 1-800-458-5231 or I use the web: http://www.cdcnac.org Contents HIV University goes national! 2-3 Study shows many people don't w idm tand theirMsease......... 2 Positive in Kenya............... 4 Report from Chiang Mai: International PWA Conferenced ; Women and AIDS: A different disease............... 6-7 ; National & Int'l Calendar........ 8 WORLD P.O. Box 11535 Oakland, CA 94611 phone: 510/658-6930 fax: 510/601-9746 HIV University goes national! January 1998 by Krista J. Heitzman, World Health Direct A five-day training program en-titlpd. "Bringing WORLD'S JL JLH IV University to Your Com?munity: A Women's Peer-Based Treat-mentEducation Training Program" was held on December 1-6,1997 in San Fran?cisco, CA. This program, sponsored by Glaxo Wellcome, brought together teams of two women from 10 cities around the nation to learn how to set up a peer-based treatment education program in their communities. The training was co?facilitated by Angela Gaetano of Health Crisis Network in Miami, FL and Ma?rina Alvarez, a community leader and HIV consultant from New York, NY. Excitement filled the air as these 20 pow erful individuals met each other at the program's opening reception on Monday, December 1 (World AIDS Day), 1997. Representing a multitude of back?grounds, cultures, races, and religions, it was evident that these women had one very common goal: The Empower?ment of Women. The training began with a day and a half simulation of HIV University, led by Rebecca Denison and Sandi Luna of WORLD. During the simulation, the par?ticipants learned the importance of giv?ing women in each of their respective communities the voice to state their spe?cific needs. As community issues such as funding, outreach, diversity, and childcare emerged, it became evident that everyone had their own particular challenge ahead of them. For example, the California team will organize a pro?gram in Spanish. Later in the week, speakers were M any HIV+ people don?t understand their disease or treatment options by National Minority AIDS Council The greatest barrier between people with HIV and new lifesaving medications may be personal lack of knowledge, according to a study of 1,069 HIV-positive people, conducted by the Philadelphia EMA Commission, an advisory board to the Philadelphia Health Department. The study finds that lack of knowledge may lead many individuals, particularly people of color, not to seek care at a time when appropriate treatment could dramatically improve their prospects for healthy life. According to the study data, almost one out of three (32%) people with HIV said they did not need doctor visits. Ten percent of respondents did not know their T-cell count and 33% did not know their viral load, an important indicator of disease progression. The study found that lack of knowledge about HIV disease may be greater among people of color with HIV. Both African Americans and Latinos with HIV are over twice as likely as Caucasians not to know their T-cell counts (14% for A -IuCuIirAmeriCanS and 10% f? r Latinos vs-4% for Caucasians). Forty percent of African Americans and 50% of Latinos with HIV do not know their viral load, while only 17% of Caucasians reported the same. Further, 11 % of African Americans and 9% of Latinos do not understand the meaning of viral load, versus only 3% of Caucasians. The study also revealed that people of color were significantly less likely to be using new anti-HIV drug combinations t an Caucasians. Only 56% of the African American and Latino respondents in the study reported using protease m i i tors, while 71 % of Caucasians reported using the drugs. HIV-positive women are also less likely to receive the new drug combinations than are men (56% vs. 66%). The study found that, while transmission mode does not seem to be a factor in accessing the new drugs, insurance status does play a role. The statistics indicate that many people, and many people of color in particular, are not only infected with HIV, but also affected by a lack of information," said Pat Bass, Co-Director of the AIDS Activities Coordinating Office for the i a e p la . we are going to change this health care system, we must continue to put information in the community, particularly information that's targeted to communities of color." Page 2 WORLD P.o. Box 11535 Oakland, CA 94611 (510) 658-6930 January 1998 invited to talk on subjects such as Treat?ment Issues (both Western and compli?mentary), how to do Nondirective Treat?ment Education, HIV Funding Streams, Coordinating Volunteers, and Gyneco?logical Issues. Additional workshops in?cluded Group Dynamics and Group Fa?cilitation Skills, to better prepare the group for their roles as program coordi?nators. Some very effective role playing by the group taught us how to handle even the worst of situations! If it sounds exhausting, you don't know the half of it! However, spirits rose once again as the program closed with a most memorable graduation cer?emony. Performances by two partici?pants, Petera Johnson and Janice Brickhouse, set the stage for an incred?ible evening of tears, laughter and lots of hugs. Not only did these 20 women show amazing strength for themselves and their communities, but they also formed very strong personal bonds over the intense five days of training. As the cel?ebration came to an end, I overheard whispers of a reunion?and knowing these women, nothing will stand in their way! Good luck to all! You are not alone! New HIVU coordinators 6? sites HPhe following individuals participated in the national HIVU training A and will be working hard to organize a treatment education program for women in their communities. If you would like to help, please contact them. HIVU is a great opportunity for people of diverse skills and backgrounds to work together toward a shared goal of helping women with HIV take control of their health. California Elizabeth Contreras Jenny Guembes-Cook Bienestar 6850 Van Nuys Blvd., #110 Van Nuys, CA 91406 Phone: 818/908-3820 Voice Mail: 818/909- 7346 Fax: 818/908-3844 Colorado Shannon Behning Mary K. Ross University Hospital HIV/AIDS Primary Care Program B-163- 4200 E. 9th Ave. Denver, CO 80262 Phone: 303/372-8683 Fax: 303/372-8230 Connecticut Michigan Janice Brickhouse Charlene Lee-Pharr Women's Health Project/TOPS 158 Mill Hill Ave. Bridgeport, CT 06610 Phone: 203/576-3910 Fax: 203/367-9588 Florida Petera Johnson Patricia Joseph M.O.V.E.R.S. 5605 NW 7th Avenue Miami, FL 33127 Phone: 305/754-2268 Fax: 305/754-2723 New York Loma Gottesman Susan Rodriguez 145 W. 10th Street New Yok, NY 10014 Phone: 212/924-8502 Veronica Mitchell Virdell Thomas Community Health Awareness Group 3028 E. Grand Blvd. Detroit, MI 48202 Phone: 313/872-2424 Fax: 313/872-5546 Kansas Micki McCaffrey Angie Keyes Southwest Blvd. Family Health Care 340 Southwest Blvd. Kansas City, KS 66103 913/722-2105 (Micky) 816/921-5807 (Angie) Fax: 913/722-2542 Oregon Joy Halme Karen Pancheau Women's Intercommu?nity AIDS Resource (WIAR) Left to right: Rebecca, Lorna, Elizabeth (front), Sandi, Micki, Angela (front) & Angie. Ready to go home and startwork. 1608 SE Ankeny Portland, OR 97214 Phone: 503/238-4420 or 888/303/4420 Fax: 503/238-4610 Texas Amy Leonard Donna Rochon AIDS Foundation Houston, Inc. 3202 Weslayan Annex Houston, TX 77027 Phone: 713/623-6796 Fax: 713/623-4029 Washington, PC Patricia Nalls Belinda Rochelle The Women's Collective POB 57254 Washington, DC 20037 Phone: 301/459-1707 Tel: 301/459-1707 (510) 658-6930 WORLD P.O. Box 11535 Oakland, CA 94611 Page 3 X A Then I told one of my l / \ / family members that I V V was HIV-positive she retorted that I got what I deserved. She said that "life in the fast lane" got me where I am! In a way she was right, but she was very wrong too. Sure, I once lived life in the fast lane, but that was over eight years ago. After seven hospitalizations, 74 hours in a coma, 2 suicide attempts and having a baby I barely knew I had conceived until I was almost 4 months gone, I hit my alcoholic bottom. By the Grace of God, A.A. (Alcoholics Anony?mous) found me and turned my life around. I didn't just slow down; I stopped and changed my whole life. I sobered up in 1987and had a major operation in 1990. The doctor did an HIV test before the operation, without my consent of course. He told me at a follow up exam that I was negative. I was relieved but also angry. I wondered, "What if it had been positive?" In June of 1991, after four years of sobriety, I went through a very bad time emotionally, mentally and spiritually. My boyfriend of many years found a first love in politics and I came third. I felt lost, confused, hurting and very vul?nerable. A.A. kept me sober, but I ig?nored other tools that I could have used, and being human I turned for solace to the arms of a foreigner I had known barely three months. I remember asking him to use a condom, and his answer to me was one I will never forget. "I am my father's son and as such cannot insult the memory of my father and forefa?thers by putting on a plastic sheath that has no place in our culture." Wow! I had never seen anyone positive and knew little or nothing about AIDS except the horror stories of skin and flesh literally falling off one's body. This man looked healthy, without a blemish on his skin. He loved life and lived fully. There's no way I would ever have ex?pected he had the virus. We talked about it and he reassured me. I want to believe he never knew and I have forgiven him. He returned to his country in Au?gust of 1991 and by November I knew that I had contracted HIV. I came down with a terrible rash all over my body, Positive in Kenya by Jayne had a bad fever, and felt like I had a million ants roaming my blood. I was going crazy wondering whether or not I had it. Finally, in February 1992,1 walked into a private clinic and asked for a test. Even though I suspected I had the virus, the result threw me. My first reaction was anger. Anger at myself and at Tho?mas, but mostly at God. I had changed and was living a straight life for God's sake. How could I catch HIV? What did God want with me? I had died and been rebom through A.A. Did I have to die again? What had I done to deserve all this? Why me? Why not me, I'd eventually ask. I oscillated between anger, self pity, fear, severe panic attacks and anxiety. By the end of the fortnight I'd made up my mind that I wasn't going to wait and die that horrible death. I was going to take my life and this time I would do it well at a place I loved. I bought a one?way ticket to the coast, because that's where I wanted to die, in the deep dark waters of the ocean. I would buy myself a bottle of vodka, check into a cottage by the ocean, and drink. Late in the evening at high tide I was going to walk into the waters until the waves swallowed me. But God had different plans for me. A day before I was due to lea ve I had a visitor, a priest who was someone I knew, loved, and respected greatly. Be?fore long he had me pouring my heart and my plans to him admidst great sobs. It seemed God really wanted me alive. It took eight months for me to come to terms with the fact that I had a virus and was not going to drop dead in the next month or two. The next few months were the most uncertain, fright?ening and painful I've ever experienced. Thomas died in April of 1992, ten months after I'd first met him. I got the message in the cruelest way possible. I gota phone call from this lady he worked with here, saying "Jayne, I have just gotten a fax that Thomas died yesterday of T.B. (translated AIDS). Did you sleep with him?" What could I tell her? I'd just found out less than two months previ?ously that I was positive! I said no, but that news shook me like nothing else. I went overboard trying to keep healthy. I wouldn't take any public trans- J a n u a r y 1998 port or stay in a room with more than 3 or 4 people at a time in case someone breathed into my face and I caught TB. If it was raining I wouldn?t leave my office or house, because I was sure the rain would cause huge ugly welts. I stopped hugging my seven year old son in case I gave him the virus. (Like I said, I went overboard.) When I wasn't working I stayed at home and stayed in bed. I nicked my finger while chopping food. I threw the whole lot away and refused to go back into the kitchen. Just as I had been a slave to alcohol, I had become a slave to the virus! My whole life was focused on it, in a very negative destructive way. This was not good for my health and my mental state. I had three wonderful friends, none of them positive, who stood by me. Gen?tly but firmly they stirred me from fo?cusing on myself and the virus. They assured me I had a lot of life in me yet. I had gone for a physical and came out 100% healthy. I was going to A.A. for my peace of mind, going to the gym three times a week, eating healthy foods, and resting as much as I could. With all that I was unlikely to disintegrate in the next couple of months or even years. In 1993,1 asked my doctor to put me in touch with other positive women and voila! They welcomed me with open arms. It was the best thing that could have happened. It was easier for me to accept the group than it's been for many women. After all, I had my training in AA and believed that just as alcoholics needed other alcoholics, so did positive people need others like themselves. It no longer matters to me how I got the virus. What matters most now is how I can live with HIV. AA taught me to live but I still held back a lot. The virus has led me to the rest of my learning and growth process in the journey of life. I've seen too many people take their own lives or deliberately live it up and die early because they did not get the message of life in time. My dear sisters, if you even remotely suspect that some?one has the virus, please be there for them. It could make the difference be?tween life and death. I know we can't reach everybody or save the world, but it makes a difference to that one person that we reach. Page 4 WORLD P.O. Box 11535 Oakland, CA 94611 (510) 658-6930 Report from Chiang Mai, Thailand J a n u a r y 19 9 8 International People With AIPS Conference by Nancer LeMoins, an artist with AIDS living in San Francisco, CA In November I attended the 8th World Conference of People with HIV/AIDS in Chiang Mai, Thailand. These conferences are held every other year in different sites around the world to encourage as much partici?pation as possible. This conference was cosponsored by the Global Network for People with HIV/AIDS (GNP+), the In?ternational Coalition of Women Living with HIV / AIDS (ICW), and a local Thai organizing committee. The conference was originally sched?uled to take place in Malaysia, but one year into the planning the government said that our safety "could not be guar?anteed" so the site was changed to Thai?land. This and many other organizing, financial and assorted personal prob?lems increased the pressure to success?fully facilitate such a huge event. This co n feren ce was u n iq u e in that it was by a n d fo r H IV -positive people This conference was particularly unique in that it was by and for HIV?positive people, unlike other forums that are organized to bring doctors, provid?ers or scientists together. We came from around the world to say what we want and need, and to learn and get strength from each other. There was a small par?allel forum for HIV-negative people, but most of the conference was closed to those who were not HIV-positive. I thought the conference was a huge suc?cess in providing a safe space for us to really talk and be heard about what it is like living with HIV. Sharing our stories The first days of the conference were split into specific workshops for women and men. I was late arriving due to a pit stop at the hospital before I left, so I went straight from two days of travelling to a room filled with women, mostly from Asia, talking about their lives with HIV. That experience set the tone for me; even though I knew in my head that things were different in the rest of the world, to actually hear these women's stories was something else altogether. One woman from the Philippines told us about how the government doc?tors informed her of her HIV status by stamping it on her passport. They also tried very hard to keep her from meet?ing other positive people. I kept think?ing that it really was such a sign of her amazing strength and resiliency that she was sitting there in that room telling that story. She now works for an AIDS organization in the Philippines, using her own experience as part of her advo?cacy work to improve the lives of people living with HIV. I kept looking around the room and seeing how so many of the women there were very young, how many had chil?dren to care for, and hearing that they had really almost no treatment options except occasionally AZT. Over the course of the conference I spent more time with these women and men, and I kept think?ing that there was not a lot of hope for them in the way that we as Westerners tend to look at the idea of hope. No drugs, no hope. I guess when you make friends with someone and you look into her face you want to know that she has a bright and beautiful future. W hen you make frien d s with som eone and you look into h er face, you w ant to know that she has a bright and beautiful fu tu re. Who are the treatments for? I co-facilitated a workshop on treatment issues with Hazel Betsey, another woman with HIV from San Francisco. We spent a lot of time explaining about different HIV treatments, which was very painful given the reality that the vast majority of people around the world will never even have access to these medications. And, of course, we are see?ing here how often the meds cause diffi?cult side effects, and don't work for so many people after all. I came away from that conference knowing that I will never be able to look at the issue of a cure the same way I did before. It's a really big world out there and HIV and AIDS is no where near being under control. I really hate the arrogance of our media for suggesting that drugs that cost $20,000 a year mean anything to people making$l,200ayear. At a certain point I had to really accept what it means for some people to not have access to drugs that we enjoy in San Francisco. The man who worked so hard on the conference, who designed the logo, died the day after he delivered the final design. I w ill n ev er be able to look at the issue of a cure the sam e w ay I did before. Getting to know people's hearts I also heard a lot about ways people are fighting back with community, and herbs, and meditation, and spirit. Maybe we are too conditioned to think that if there is no protease, no d4T or 3TC, there is no hope. I really can't say for sure. I only know that what seemed so hopeless to me when I first heard many stories, ended up feeling very hopeful as I got to know people's hearts better. The workshop that I facilitated about art in the HTV community was the rea?son I was given a scholarship. One of the participants was an Australian man who showed us the work he has done mak?ing prevention posters using aboriginal art. In my workshop, we looked at many HIV-positive artists' work and discussed the role of art in our community, as well as how to involve more people in the creative process including theater, dance, written and visual arts. The way this conference emphasized culture made it much fuller and more complete. During the entire conference there were activities meant to spotlight what was unique about each of the many cul?tures, including spiritual, that were gath?ered there. The local Thai organizers did a great job of introducing us to Northern Thai culture. Really trying to see into one another's cultural identities made understanding the role of HTV in our lives even more personal and real. (510) 658-6930 WORLD P.O. Box 11535 Oakland, CA 94611 Page 5 AIDS in Women - A Different Disease J a n u a r y 1998 Not gay, not straight ?AII7S is a human disease AIDS was first documented among ho?mosexual men in the United States in 1981. Since that time, a stereotype has prevailed in this country of AIDS as a gay disease. However, AIDS is not a gay or straight disease. It's a human disease. Worldwide, more than 70% of adult HIV infections are a result of heterosexual transmission. In the U.S., sexual trans?mission among heterosexuals is increas?ing at an alarming rate. Likewise, AIDS is not a male or female disease. By the year 2000, the number of women and number of men infected with HIV world?wide will be equal. A IP S rising , yet often unrecognized , for women According to the U.S. Centers for Dis?ease Control (CDC) the proportion of total AIDS cases attributable to women increased from 7% in 1985 to 20% in 1996. Today, AIDS is a leading cause of death in women between the ages 25-44 in 15 major U.S. cities. Nationwide, AIDS is the third leading cause of death among women in this age group. Worldwide, over 3,500 women become infected each day, according to UNAIDS. From June 1982 through December 1996, the CDC received reports of 85,500 cases of AIDS among women in the U.S. These figures do not include the many women who are HIV-infected and ei?ther do not know their status or have not yet received an AIDS diagnosis. The majority of AIDS infections in women in the U.S. in the 1980s were caused by injection drug use or sex with an injection drug user. However, in 1994 heterosexual transmission sur?passed injection drug use (IDU) as the primary source of infection. Minority communities are being hardest hit. Of the 13,820 AIDS cases among women reported in 1996, 59% were Black and 19% were Hispanic, rep?resenting 78% of AIDS cases among women, even though they comprise only 21% of all women in the U.S. The AIDS experience for women in the United States is quite similar to the global experience. Just as it is in the underdeveloped world, many women by Carol Siporen, a mother with AIDS at risk live in poverty, cannot negotiate safe sex with husbands or lovers, are often infected by a husband or primary sexual partner with whom they are mo?nogamous, are stigmatized by being HIV-infected, and are less likely to have access to health care and medications. Many are more likely to die from the effects of poverty, abuse or violence than of opportunistic infections caused by HIV/AIDS. By the year 2000, the number of women and men infected with H IV worldwide will be equal. Even in 1997, women and their pro?viders seldom see themselves at risk because the sterotype that HIV disease limits itself to the gay white male, the female prostitute, the drug user, or the person with multiple sex partners is still dominant. In the September 1997 issue of WORLD, a recently diagnosed HIV-positive woman named Elaine explained that she'd been having swollen lymph nodes since 1990. Biopsies ruled out can?cer. Chronic fatigue, sinusitis, cervical dysplasia, bronchitis, and yeast infec?tions were never recognized by her doc?tors as a reason to get tested for HIV. Finally an oncologist sent her to an in?fectious disease specialist in 1997?a full seven years after the onset of symp?toms? and her test came back positive. Treatment differences The course of HIV disease, the opportu?nistic infections it can cause, and the drugs to treat it have been studied more in men than in women. Yet women have particular symptoms and problems that need to be studied. For example, many women feel that the doses of medications studied in men may not be correct for women. Accord?ing to a study presented at the National Women and AIDS Conference in May 1997, Candida (thrush or yeast), which can occur in the mouth, throat, esopha?gus or vagina, is the most common sign of HIV in adults. Esophageal candidi?asis? one of the most common AIDS-defining infections, associated with de?creased food intake and wasting?oc?curs more frequently in women than in men. In contrast, Kaposi's Sarcoma, which is common in gay men, is ex?tremely rare in women. Another study found that women are more likely to have greater levels of pain intensity. These same women are more likely to have pain go undertreated. (Does the stereotype of HIV + women as drug addicts lead some doctors to with?hold pain medication from women that they are comfortable giving to men?) Many of the current drug therapies have never been studied in women, or they were studied in too few to be able to show if there are differences in how these drugs work in women and men. One study that did include enough women to note differences found that the AIDS drug Nelfinavir may decrease the effectiveness of birth control pills (which women may take as contracep?tion or as a method of correcting hor?mone problems). Yet often researchers act like they are afraid to have women in their studies. After all, women might get pregnant, and they don't want to be liable for birth defects caused by taking drugs during pregnancy. While there are many challenges to improve women's access to treatment and research, it is important that we work to overcome them. In the first half of 1996, deaths due to AIDS fell 15% among men but rose 3% for women. Fear of medications can lead to worse survival Women are less likely to question their health care provider in terms of treat?ment. They are also less likely to tell their doctor that they are not taking prescribed medications (or why), be?cause they fear being treated like stupid, bad or noncompliant patients. I have met many minority women who fear medications as a type of racial genocide, in part because of historical abuses of people of color in research. Even when diagnosed HIV-positive, many women only come into health care through the emergency room, often pre?senting with an opportunistic infection. This further lessens chance for survival. IIH+- Page 6 WORLD P.O. Box 11535 Oakland, CA 94611 (510) 658-6930 AlPS in Women - A Pifferent Pisease January 1998 Many women prefer alternative therapies or natural aides to immune health over Western medications. While these treatments can help (I use them myself), I worry when women take them in place of, rather than in addition to, drugs that can prevent PCP pneumonia. Let me tell you why. This year, a woman in one of my support groups finally agreed to try triple combination therapy and medication to prevent PCP after feeling ill with flu-like symptoms for several months. However, she waited too long, starting the meds only after she was diagnosed with PCP. She died within two weeks. Another woman I know died of PCP this week. Many women with AIDS are dying of PCP; what hurts most is knowing that many times it could have been prevented. We can and must change this. If you have less than 200 CD4+ (T-cells) and are not taking medication to prevent PCP, ask your doctor about it. If you've gone off a prescribed medication be?cause you can't tolerate it, see if a friend or advocate can help you talk to your doctor about other alternatives. Families first Women have complex family issues and multiple life problems that they put be?fore their own HIV treatment. Women will care for children or partners with HIV and ignore themselves. In the March issueof WORLD, Ladonna tells her story. Her son was diagnosed HIV+ at the age of three. At the same time she tested HIV- positive when her ex-husband came to town to tell her he wa