Focus on Women: Challenges in the Prevention and Treatment of HIV/AIDS

These remarks were made by Linda Villarosa, contributing writer for The New York Times_, at the amfAR-sponsored continuing medical education symposium "Focus on Women: Challenges in the Prevention and Treatment of HIV/AIDS."_

I'm sorry Marcia Gillespie couldn't be here, and I'm honored to stand in for her. She is a forceful, powerful, passionate speaker and a forceful, powerful, passionate person.

Thank you very much for your commitment to learning more about the very important topic of HIV and AIDS in women. This afternoon, I am going to talk specifically about women of color, particularly African-American women, which is what I know best. I wrote my first story about AIDS in 1985 when the disease was still called GRID. It was my first feature for Essence, and I wondered why I, a young writer, was given this important story. I later found out that no other writers wanted to interview people infected with this mysterious, deadly disease. The subject was so new, particularly the science of it, that my editor in chief paired me with her college biology instructor to assist me in writing the story.

I'm going to offer you a few startling stats. Although you've probably been inundated with them, here are a few more:

  • African-American women between the ages of 15 and 44 are the fastest growing group to contract HIV.

  • In fact, among women, black women account for the vast majority of new cases. What's extremely alarming is growing numbers of black women in the south are contracting HIV, and that's the area where services are most lacking and stigma about the disease is most prevalent.

  • AIDS is also the third leading cause of death among African-American women ages 25 to 44, and the death rate is 21 times higher in black women compared to white women of the same age group. The point of that number is that we are missing out on the life-saving effects of antiretroviral therapy.

I highlight these statistics to show that, for various reasons, it seems that African Americans, particularly African-American women are not paying attention to the prevention message. And that's what I would like to focus on today. Why isn't prevention working for African-American women? (As a side note, prevention may not be working so well even with white gay men, since new infections are up in that group, a group that was considered a prevention success story.) Interestingly, it is probably NOT because they are lacking information. Estimates show that almost 95 percent of people can tell you what AIDS is, how it is caused and that if you get it you may die from it. So it's probably not that people don't know the facts. It is probably much more complicated than that.

I'm going to go through several factors that might help explain why in this day and age so many black women are contracting HIV. I'd like to say that I'm not going to speak specifically about socioeconomic factors, because that's something most of you already know. Briefly, black women are disproportionately poor, lack health insurance, lack access to affordable health care and are more likely to distrust and avoid medical services. That is, by and large, the reason that we are more likely to die of nearly every serious illness more often than white women, even ones that we contract less frequently, such as breast cancer. But the issues I am going to discuss, the reasons we make up so many new cases, really go across class lines.

First, it's important to look at the depth of the disease in the community. Obviously, there are fewer blacks than whites in the U.S.; however, our community has a disproportionate rate of HIV and AIDS cases. To put it another way, 1 in 50 black men have HIV and 1 in 160 black women have HIV. To compare, the rate is 1 in 3,000 white women. So if you are a black heterosexual woman, and you prefer black men as your sexual partner, your risk of contracting the virus if you are having unsafe sex is pretty high. In essence, it may not be that we are having any more risky sex than other races, but each time a black woman engages in unprotected sex with a man of her race, she's putting herself at great risk.

Another factor has to do with the homosexuality in our community. The stigma against being gay is perceived to be greater than in the white community, particularly for men. The key is the word "perceived." It is not that there is more homophobia in the African-American community, but that the fear of coming out may be higher. There is no Chelsea or Castro for black gays, particularly men, so they stay in the communities, communities that are havens against an often-hostile world. Because they don't want to be ostracized by the other blacks that they live with, gay black men may be afraid of coming out or being open about their sexuality. This means they end up on the so-called "down low." This term means men who sleep with men but also have sex with women -- and this phenomenon is generally accepted to be higher among blacks than whites. Of course, nothing's wrong with this, unless it's being done without protection. The famous Valleroy study last year showed that as many as 30 percent of young black gay men may be infected with HIV, and these men are more likely than white men to have sex with both men and women. I don't have to spell this out any more clearly: if there are men infected with HIV and having unprotected sex with women, it helps to explain the high new rates of HIV among black women.

Now, the two factors I mentioned explained the numbers, but they don't explain the behavior. If so many black women know how to prevent HIV -- and they really do know and can even tell you that having a man wear a condom during sex will prevent transmission -- why not just have protected sex or refuse sex if the guy won't put on the condom? Here are three reasons, fairly unscientific, but I think true:

  1. The man shortage. There is an infamous study out of Yale about marriage and college-educated, single women. The chance for a white woman to be married over 30 was 20 percent, over 35, 5 percent and over 40 she had a better chance of being killed by a terrorist, which in this day is ironic and painful to think about anyway. I happened to sit next to the researcher, Dr. Bennett on a plane, and he said that the chance of a black woman of the same ages being coupled or married is even slimmer, though that fact wasn't publicized during the furor. Now, even if you don't believe that study, which many didn't, it is true that black women are less likely to be in a relationship and married than white women. How does that make you behave, if you know your chances of finding love and companionship are low? That doesn't make you want to demand safer sex, or feel totally empowered in a relationship. Instead, those feelings may make a woman not be vigilant about making her man protect her.

  2. Along with the man shortage, there's the unwillingness to talk about sex, which is common among everyone, except in the movies, but may be more of a problem for black women. If you feel desperately uncomfortable talking about sex, you will have problems negotiating safer sex and even asking a man questions about his past. I read a wonderful analysis of this in a book called Stolen Women, by Gail Wyatt, a black psychiatrist, sex therapist and UCLA professor. She thinks our discomfort speaking about sex and sexuality, though rooted in the church, may go back even farther, to slavery. Women, who had been raped or abused by the masters on plantations, were the ones who knew a lot about sex. So it was better to be ignorant about sex and sexuality rather than give off the impression that you'd been "used." Dr. Wyatt thinks some of those feelings remain among black women today.

  3. Finally, and probably the biggest factor, is self-esteem. In all of the articles I've written, and even when I interviewed Helene Gayle who was the director of the CDC's office of AIDS prevention, this issue came up. For black women in this country, the twin evils of sexism and racism, take a toll on us. We may not feel good about who we are or how we look. We may not feel valued or celebrated. If that's the case, it's hard to stand up in the context of a sexual relationship and demand that he wear a condom. Plus, if you don't like yourself or care about yourself, deep down somewhere, you may not think you deserve it. This soul-eroding lack of self-esteem may also help explain why, even when blacks do contract the virus, we have problems adhering to the drug regimen. If deep down you don't care about yourself, you may not be able to get it together to save your own life.

In conclusion, increasingly, you'll be dealing with African-American women as your patients. I hope I've given you some things to think about and things to consider as you do the hard, important work of stopping the virus and caring for those who are living with it.

Linda Villarosa
Linda Villarosa

About Linda Villarosa

Linda Villarosa is a contributing writer to the Science section of The New York Times and the former health and fitness editor of the Times. Over the past year, she has written several articles in the "AIDS at 20" series that has run in the Times. Most recently, she profiled HIV-positive women who make the choice to become pregnant. Linda is also the former executive editor of Essence Magazine. She wrote her first article about AIDS for that publication in 1985. She is also the author of several books, including the bestselling Body & Soul: The Black Women's Guide to Physical Health and Emotional Well-Being.