Miami Herald - November 30, 2004
Andrea Robinson, arobinson@herald.com

Her case surely was unusual, she reasoned, because in her mind the virus and its resultant ailment -- acquired immune deficiency syndrome -- only afflicted gay, white men.

For months, Mikell lived in fear and denial, part of a self-imposed personal hell. 'I left the doctor's office thinking 'I'm gonna die,' " she said. "I didn't know anybody but myself, and I didn't dare tell anybody."

Gradually, though, she met other South Florida women who endured the same health nightmare. They stitched together a support system that remains in place.

Mikell, now "50, fine and looking fabulous," is among a group of South Florida women who counsel HIV-positive women on how to live. Their advice is critical, in the face of evidence that as many as 70 percent of women at one local hospital hide their health status from family and friends.

They also want to dispel myths among other women -- particularly widows and the newly divorced -- that AIDS is not their concern.

Mikell's message is timely. As health educators and activists prepare to mark World AIDS Day on Wednesday, United Nations figures show that worldwide, women account for nearly one-half of people living with HIV.

The U.S. numbers among women are not at that level yet, health experts say, but the rise is noticeable.

Among all U.S. AIDS cases, the proportion represented by women and girls rose from 7 percent in 1985 to 25 percent in 2001, according to the Florida Department of Health.

WORST OF EPIDEMIC

Women of color have withstood the worst of the epidemic.

In Florida, where women comprise 30 percent of AIDS cases diagnosed statewide through 2003, blacks account for 72 percent of those cases. White non-Hispanics and Hispanic women, respectively, account for 17 percent and 10 percent of cases.

These are the faces that Dr. Cheryl Holder sees daily at her North Dade health clinic.

Until three years ago, HIV and AIDS patients were primarily male. Now her clientele is 75 percent female, mostly Caribbean, African American and Hispanic. Nearly all of them contracted the virus through heterosexual sex.

"These are women who thought they were in a stable, monogamous relationship," Holder said.

A SHOCK

Some 23 years into the epidemic, each diagnosis brings shock. "Everybody thinks it's not going to be them," she said. Her eldest AIDS patient is a 76-year-old woman who contracted the virus from her husband. She learned of his ailment after he died.

That patient is doing well because of the support of her family and her attitude about taking her medications, Holder said.

Still, untold numbers of women tell no one, relying on support from their doctors, said JoNell Potter, director of research and special projects in the department of OB-GYN at the University of Miami School of Medicine.

Only 30 percent of patients at the women's HIV center at Jackson Memorial Hospital disclose to family and friends. "The other 70 percent don't say a thing," Potter said.

"They talk only to us. They fear they will be ostracized," she said.

WOMEN AT RISK

Dr. Lawrence Friedman, director of the division of adolescent medicine at UM medical school, said the increased heterosexual transmission puts more women at risk.

"Here we have guys on the down low," he said, a popular term for men who unbeknown to their wives and girlfriends also have sex with men. "We also have prostitutes. But we have a freer sexual society, than Asian and African countries that are more monogamous."

The women activists fear that the government and the U.S. population are asleep to the changing numbers. Mikell, a health educator with MOVERS, an HIV/AIDS service agency, was particularly appalled during this fall's vice presidential debate when neither candidate could speak to a question about the crisis among black women.

"I can't understand how can any politician that needs votes not know what's going on with HIV -- especially with HIV and women," she said.

Mikell and Sheri Kaplan, another Miamian living with the virus, are among a small number of HIV-positive women who speak out publicly, especially to women. They find audiences at small support groups, high school and college lecture halls and health expos.

Kaplan, founder of the Center for Positive Connections, an agency that focuses on heterosexual men and women who are infected, said people are surprised to hear that a vibrant, white woman has the virus. She has lived with it since 1994.

Women who approach her at health fairs are more likely to seek information for their kids and grandchildren than for themselves. A brave few, she said, will ask for advice on the best way to tell a man to use a condom.

'ASHAMED'

"They're ashamed," she said. "They don't have the negotiation skills. These are women in their 50s and 60s."

Even so, the level of denial remains high, especially among widows and the newly divorced, Kaplan said.

"Everyone thinks they are immortal. It can't happen to them," Kaplan said. "That's why I put myself out there. It happened to me, and it can happen to you."

041130
MH041118

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2004. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .