The female face of HIV: ‘We don’t have to care for ourselves’

By Maggie Fox, NBC News

Del’Rosa Winston thought she’d done everything right. She kept herself in steady employment, and waited until she was married to start having children. When her marriage ended, she started having regular HIV tests, just in case. So when she settled into a new, steady relationship, she never dreamed she’d end up infected with the AIDS virus.

“I had a job. I had been in the military. I was educated,”  said Winston, a soft-spoken, well-groomed woman with fashionably cropped red hair. “I just got it from a straight man in a monogamous relationship.”

More than a quarter of new infections in the United States every year are in women, and of the 1.1 million Americans with the AIDS virus, 280,000 are women, according to the Centers for Disease Control and Prevention. Black women are especially vulnerable – their infection rate is 15 times the infection rate for white American women.

Winston’s smooth skin and easy smile represent the hidden face of the AIDS epidemic in the United States – the people who don’t look like “typical” HIV patients. The 50-year-old mother of three hopes that speaking out at the 19th International AIDS Conference, being held in Washington, D.C., will help reduce the stigma and ignorance that fuel the spread of the virus.

“There are so many people who are getting it because they loved someone,” Winton told NBC News in an interview. Winston couldn’t wait to be in a steady, safe relationship so she could stop using condoms, which she found uncomfortable to use. Her boyfriend, who has since died, told her he had no idea he was infected. But he was, and so was Winston. “We didn’t fit the parameters of what an HIV-positive person looked like,” she said.

She can remember the moment in 1990 when she was told her test came back positive. “The room was gray,” she said. “Like stainless steel. I know there were objects in it but I couldn’t see them. I just flowed like water to the floor.”

Health experts at the conference say they are trying to find new and better ways to reach not only the people at the highest risk – young gay and bisexual men – but others, like Winston, who may not intuitively know how easily and insidiously the virus can move during a moment of passion.  “Everyone’s at risk, whether you have the greatest trust relationship or not,” Winston, who now works as an HIV counselor in Atlanta, said.

Health experts are also trying to figure out some of the factors that make women vulnerable and keep them from protecting themselves even if they do understand the risks. Winston has some ideas – women are often too busy looking after others. “We put everyone else first – kids, school, even the PTA. We get into the mind frame that we don’t have to care for ourselves,” she said.

Another factor may be domestic abuse. A team at the University of California San Francisco published a study on Monday showing that physical and sexual abuse and trauma are major factors affecting which women become infected.

“For a long time we have been looking for clues as to why so many women are becoming infected with HIV and why so many are doing poorly despite the availability of effective treatment,” said Dr. Edward Machtinger, who led the study. “Women who report experiencing trauma often do not have the power or self-confidence to protect themselves from acquiring HIV.”

Their team did a study called a meta-analysis, looking at data from other studies involving 5,900 women. They found 30 percent of women infected with HIV had post-traumatic stress disorder, or PTSD, compared to 5 percent of the general population.  Twice as many women with HIV reported they had been victims of partner violence as women without the virus, they found.

Kat Griffith thinks she knows why. The slender redhead from Peoria, Illinois has been HIV positive for 21 years and she blames a violent boyfriend from high school. “I had a jealous and controlling partner who called me names, demeaned me,” she said. “I had no self-esteem.”

But Griffith went away to college and, she thought, started a fresh new life. “I knew that HIV could affect me and I thought I asked all the right questions,” she said. “But my abuse made me feel I was not worthy of protection.” Her college boyfriend infected her.

Women may often put others first but they also lack a good way to protect themselves, Griffith noted.

For years, researchers have been looking for ways to protect women against the virus. There’s been hit-and-miss progress with microbicides – gels or creams that women can use quietly to reduce the chance they’ll become infected during sex. On Tuesday, researchers will announce the start of an advanced, Phase 3 trial of a device called a vaginal ring impregnated with dapivirine, a drug used to treat people with HIV. Researchers will enroll 3,500 women in the two-year study to be conducted in Africa, where half of all HIV patients are women.

Studies have shown that microbicide gels or creams can work – at the last AIDS conference in Vienna in 2010, researchers reported on one that reduced a woman’s risk of infection by 39 percent. But other studies haven’t done so well and experts fear inconsistent use may be one problem.

A flexible, silicone ring may be easier to use and less intrusive than a gel that must be applied before and after sex, the researchers hope. So does Griffith. “After 30 years, we still do not have a completely female controlled prevention technique,” she said.