White Women and HIV
"Well, you know, we don't keep those kinds of statistics," said the spokeswoman for a large HIV service organization.
It was my third day of calling HIV service organizations to talk about white women and AIDS, and things were rapidly going downhill. Finally, after several days of calling various AIDS organizations across the country, I was referred to WORLD, Women Organized to Respond to Life-threatening Diseases, in Oakland, California. Headed by Executive Director Rebecca Denison, herself a white woman living with HIV, WORLD serves a diverse community of HIV-positive women. Then two Los Angeles-based organizations, Women at Risk and Women Alive, joined with WORLD in helping me tap into the grassroots network of women living with AIDS. The first women I talked to reached out in turn to their friends, and suddenly women across the country were calling me to ask about this article. I interviewed about ten women, whose ages range from 22 to 53 and who live in California, Maine, New York, and Pennsylvania. Some have AIDS, others are simply HIV-positive, and some are long-term survivors.
Prevention programs tend to focus on black and Latin women, the female populations hardest hit by HIV. Many of the women interviewed for this article, especially those who are politically aware or who work closely with women of color, were anxious about discussing white women and AIDS. They know too well how often women have been divided, pitted against each other to fight for scraps. "I see it as ridiculous that we focus on one group at a time, when the bottom line is the fluids that transmit HIV, and women in many, many communities face the same problems," says River Huston, an HIV-positive artist and writer who lives in Pennsylvania. "When we separate, we divide our power, and we need all our power. Divide and conquer has been used over and over against us."
The point is well taken, and the author wishes to stress that this article is not meant to divide women with AIDS or to chip away at hard-earned funding for prevention among women of color. It is meant to open a dialogue on HIV within white communities, especially among heterosexual women, the vast majority of whom do not see themselves at risk.
Are White Women at Risk?
Statistics from the Centers for Disease Control provide some interesting information about white women. Women's infection rates are rising, and the vast majority of new infections are among black women and Latinas. As of June 1998, women accounted for 32 percent of all adult cases of AIDS and 49 percent of cases among people 13 to 24 years of age. Of these, 23 percent are white women, 56 percent black women, 22 percent Latinas, and less than 1 percent each Asian and Native American women.
But when that breakdown is compared with the number of people of each race in the overall population, a better sense of the impact of AIDS in different communities emerges. White people are the largest racial group in the United States, so the number of white women with AIDS actually represents a smaller proportion of their racial group than would an equal number of black women or Latinas. Statisticians measure incidence by looking at the number of cases per 100,000 of population. Looked at this way, among every 100,000 white people, three will be women with AIDS. This compares with the Latin community, where the ratio is 22 per 100,000, or African-Americans, where 59 of every 100,000 people are women with AIDS. It is no wonder that prevention funding is targeted at populations of color.
How Do White Women Get Infected? What Are Their Patterns of Risk?
According to the CDC's most recent figures, which represent June 1997 to June 1998, 36 percent of white female adults and adolescents with AIDS said they were infected through injection drug use, 39 percent through heterosexual contact, and 24 percent could not identify how they had been infected. Of the women infected through heterosexual contact, over half, 54 percent, had no idea how their partners had been infected. Among white female adults and adolescents who are HIV-positive but don't yet have an AIDS diagnosis, 19 percent were infected through injection drug use, 41 percent through heterosexual contact, and 39 percent didn't know. Fully 75 percent of these women who contracted the virus through heterosexual contact could not identify how their partners might have gotten HIV.
These are frightening figures, especially in light of the fact that heterosexual white women tend to consider condoms only a temporary measure, to be used until both sexual partners can be tested or until they think they know enough about a partner's background to feel that he's "low risk."
"I found out I was HIV-positive in 1986, and shortly after that my sister was separated and went through a divorce," says Nora Drake, 48, a retired graphic designer in Manhattan Beach, California. "She would start out with condoms, but then with each new guy it was 'Do you love me now?' 'Do you trust me, now?' It was as though condoms were a temporary thing until you really trust the guy, rather than that condoms are all about living and longevity."
"I was infected by my boyfriend. He was positive and never told me." 'Cathy Hernandez,' an HIV-positive outreach worker at Women Alive, goes on: "It never occurred to me that someone would love me and care about me and knowingly infect me with the virus. It was 1993 when I first met him. The rumors were out about what people with HIV looked like. He didn't use drugs. He looked really, really healthy when I first met him. He wasn't gay."
Laura Roberts is a 28-year-old AIDS Educator at Women at Risk. "I was infected through my fiancée. He didn't know he was infected, so it wasn't a malicious victimization. Our relationship started in the early 1990s. We were just two young lovers. He was a college graduate with a good job and a great future ahead of him. We were in a relationship. We were doing everything right and our world came crashing down around us. We talked a bit about where he may have become infected. He thought back to a vacation in Brazil where he had unprotected sex with multiple partners. I'm meeting more women where that is the norm. It never occurred to them that this would ever affect their life. Women need to stop thinking it's about how old you are, or what race you are. It doesn't matter what type of sex or how you want to label sex. Sex -- oral, anal, or vaginal -- that's what transmits HIV."
"I got together with my husband in 1989," says Hazel Brown, 53, an artist from Ojai, California. "This virus is very entrenched in people who are in the closet. I assumed we were all right, and having a monogamous relationship, and in 1996 he gave me herpes, and I wondered, 'What else have I got?' The nurse asked me about my risk factors, and I was shocked when my test came back positive. It took me a year to get him to go to the doctor, and then he had only 100 T-cells and a viral load of 750,000. He never had an opportunistic infection. He's never been sick to this day, and with the Peter Duesburg stuff about 'HIV doesn't cause AIDS,' he was backed up in his denial."
White Women and Disclosure
"Women have a hard time disclosing as people with HIV," according to Becky Trotter, a 30-year-old artist, motivational speaker, and AIDS advocate. "That was true in New York and in Maine too." River Huston, who has just finished a book on widely diverse women with HIV, agrees. "Writing this book, I was often the very first person with HIV, let alone woman, they had ever met. White women are so isolated, I think HIV infection is very underreported. I went to Georgia. We had fifteen shots lined up, to photograph women with AIDS. Every one of them canceled. Of all the women who agreed to be in the book and then canceled, most were white women."
"I live in Ojai, California, Santa Barbara's hotter cousin. Reagan is king here," says Hazel Brown. "I wonder about the hidden epidemic. I know two other women, and we're just supposed to disappear. I took care of a girlfriend before I got infected. She was an IV drug user and had classic seroconversion syndrome. She was so sick we ended up at the local emergency room. We didn't know what it was. The medical staff never guessed. They didn't have a clue. But if she were a woman of color it would have been the first thing they thought of."
Laura Roberts adds, "People see me -- I'm blonde, I live at the beach, I'm the girl next door -- and when we go into schools, you should see their faces change when I tell them I'm HIV-positive. That's why my AIDS education work is so important -- they'll remember me in the future."
"Women are being flat out told that they aren't at risk. Middle- and upper-class women think that only poor people get HIV." says Becky Trotter.
"I'm reminded of a woman I knew here in Pennsylvania. She died at age 70, and her daughter's last request was permission to tell other people that her mother died of AIDS," says River Huston. "She said 'Yes,' and now her daughter goes all over and educates groups about her mother having AIDS and how hard it was not to be able to tell anyone. Older women get AIDS too."
"I found out I was positive March 25, 1996," said 'Cathy Hernandez.' "I felt like I was the only woman out there. I didn't know anyone else who was a female and positive. In 1997 the National Conference on Women and HIV was in Pasadena, with 400 HIV-positive women. Just to see that many other women!"
Issues That Aren't Often Discussed in the AIDS Community
As I interviewed, points I have never heard discussed within the AIDS community came up:
"Often I felt dismissed, that people made assumptions that I'm more privileged," says Becky Trotter. "I was constantly trying to affirm we are all in the same boat. I ran away from home when I was 14. I've been homeless, sold drugs, went to jail, certainly stole and did my share of hard living."
"We have to reach out in the recovery community, because many people are afraid to talk about HIV," according to Cathy Butcher, Executive Director of Women at Risk. "I know of women in twelve-step groups where one man has infected six women. Jan, one of our speakers, was a loved member of the 'rooms' with twenty years of sobriety. Disclosing in twelve-step meetings, she helped people believe they could tell their status and not be thrown away. To address HIV among heterosexuals, we have to reach men as well as women, and twelve-step meetings are a good place to start."
"I didn't come out about being infected through anal rape until 1996 because in the AIDS community you get the message that it doesn't matter how you got infected," says Becky Trotter. "Before I tested positive I started the first incest support group in Joplin, Missouri, and a shelter for rape victims and battered women. In Missouri, if you rape someone you are automatically tested for HIV, and I'm partly responsible for that law. I got flack from AIDS activists. I'm not generally for mandatory testing, but if you sexually assault a child or rape someone, why should the victim have to wait to find out if they have HIV?"
White Women and Doctors
Relationships with healthcare providers came up again and again -- as it does with most people with HIV. Many of the women I talked with told stories of assumptions, misdiagnoses, and poor treatment from their physicians that cost them years, pain, and missed treatment opportunities. These they lay at the doors of doctors who did not consider HIV, even when in the face of opportunistic infections.
"I found out where the AIDS clinic was by talking to the homeless guys when I gave them money or food," reports Hazel Brown. "It took a year for me to have the nerve to see a doctor after I was tested. My weight went from 150 to 115. It was pretty scary. I had an ovarian tumor. My gynecologist for the past twenty years said, 'My patients aren't at risk for HIV.' Once I told him, he said, 'Go to the county clinic. They have doctors who are experienced with it.' I was pissed off, because he's a good gynecologist. Women who are having problems should have the best. But he did intervene to get me a different doctor."
"I was living in New York City, the center of HIV healthcare, but my doctor never tested me for hepatitis," says Becky Trotter. "He tested other people for hepatitis automatically, but made assumptions about my life. It was my doctor in Maine who told me I had hepatitis C as well as HIV. I cried.
"When I finally found out I was positive, I was 19 years old," Trotter goes on. "I had swollen lymph glands. My white blood count was low. [My doctor] sent me to a cancer specialist, and I was having lymph node biopsies. I was in the midst of coming out of the closet, dealing with the aftermath of this rape, and one day I picked up a brochure on HIV. I read the symptoms and I fit them. I took it to my gynecologist, and she said, 'There's no way. You don't have HIV.' Finally, I went to get tested and she was shocked. But she has learned a lesson, and I know she talked to several of my friends who are her patients about their risks for HIV. We have got to educate gynecologists, because they are the key to reaching women. Gynecologists are the only place that many women get any health information. We have to get rid of this whole business of 'low-risk groups.' Doctors can't assume that women don't have HIV. They have to learn to ask, and listen to the answers."
"I've gone through 22 doctors and have lived with this for ten years," says River Huston. "Early in my infection they decided to do a bone marrow biopsy, and the doctor who did it was very insensitive. They didn't give me a gown. The blood dripped on my dress, and the doctor said, 'If your ass wasn't so fat, this would be easier.' When I came back for the results, they had lost them. After all that. And then the nurse said, 'Why don't you just enjoy your life. For an HIV-positive person, you're really robust.' I was really angry and yelling and I threw a chair at the doctor. They pulled me into an office to calm me down. And that moment I said, 'I must get involved and educate myself so no one will ever, ever treat me this way again.'
"Now when I'm in the hospital and strange doctors come into my room, I say, 'What are you here for? What do you want? Are you charging me for this?' When they bring a new doctor to examine me and to all my questions he says, 'I don't know, I don't know, I don't know,' I say 'Are you going to charge me for not knowing the answers? I have to pay for my own medical bills. Go practice on someone who is only here once in a while.' As women we aren't taught to say 'Fuck you!' But I've learned I have to speak up about my treatment."
"I want to send a question out to your readers," says Nora Drake. "I've got protease paunch, and I'm on human growth hormone (Serostim), and I'm post-menopausal. I've had some unusual bleeding, and I'd like to hear from other women who are having this symptom." [Any responses sent to the author at Ktimour@aol.com will be forwarded.]
How Can White Women Be Reached
"We have to get into colleges more. Malls and stores and beauty salons -- wouldn't it be great to see tags on clothing teaching you about fluids and risks? And more than just on the subway -- I live in Staten Island, and a lot of women here don't ride the subway," says 36-year-old New Yorker Nancy Ciccone. "I always say that I didn't do anything different than your mother did to have you. You have to have sex with one infected person."
"Through women's magazines, National Public Radio, theater," according to Hazel Brown. "We need to reach women over and over and over again."
"Through really intensive focus groups, peer education, and education of gynecologists," says Becky Trotter. "Reach women through the activities of their everyday lives -- the supermarket, bars, restaurants, clubs, daycare centers. We should have a condom machine in every women's room throughout the country."
"I'd start an institute for the development of vaginal microbicide. I'd use television to announce and educate women about how to use them once we had them. This is a national health emergency, and just like those ribbons that go across the television to announce tornado warnings, I'd have announcements about how to avoid HIV. But most important is developing microbicide."
These are the thoughts and stories of a small number of HIV-positive white women -- their stories are as diverse as they are. The safer-sex prevention message is clearly not reaching them, and, though their numbers are much smaller than those of black and Latin women, it is important that they be included in prevention efforts. A discussion of the issues may help to identify new prevention avenues that will move us toward the goal of reaching women in all our diversity.
In the words of River Huston, "We need all our communities, working together, for then we are truly powerful."
Organizations for Women
Women Organized to Respond to Life-Threatening Diseases (WORLD)
3948 Webster Street
Oakland, California 94609
Telephone: (510) 658-6930
Women at Risk
5183 Overland Avenue
Culver City, California 90230
Telephone: (310) 204-1046
1566 Burnside Avenue
Los Angeles, California 90019
Toll-Free Hotline: (800) 554-4876
Women's AIDS Network
584 Castron Street, Suite 321
San Francisco, California 94114
Telephone: (415) 621-4160
Women's Health Project
Staten Island AIDS Task Force
42 Richmond Terrace
Staten Island, New York 10301
Telephone: (718) 981-3366
Coastal AIDS Network
P.O. Box 956
Belfast, Maine 04986
Telephone: (207) 338-6330
Illustration by Eugenia Morrison
Karin Timour is a New York City-based AIDS consultant and a frequent contributor to Body Positive.