Nell Davis never expected to be in the national spotlight at 64 years old. The California mother and grandmother never expected to be diagnosed with HIV, either. But she has become one of the new faces of HIV by being featured in the Frontline documentary Endgame on PBS and participating in several panels at AIDS 2012, the International AIDS Conference.
Davis tells her story with quiet dignity, and in the process she has become a voice for and a minister to other women "of a certain age" who find themselves navigating the waters of HIV.
The unlikely activist, who relies heavily on her faith to get her through, says that it became important to her to bring HIV education and awareness to her own church. "It wasn't easy. But I wouldn't give up," she says. "The pastor at the time was reluctant to take this on. But after we got a new minister, I went to him and asked about setting up an HIV/AIDS ministry." His response, she says, was conditional. "He said that we could do it if I promised to lead it. And I did," she added with the smile of a woman committed to making good things happen.
Across the country, Black women make up 60 percent of all new infections among women, most acquiring the disease through heterosexual contact, according to the Centers for Disease Control and Prevention. And while HIV education and awareness campaigns focus on Black women ages 18 to 34, women in their 40s and beyond are not always getting the message of safer sex and testing.
Between 1988 and 2001, the rate of HIV infection in women ages 50 to 59 rose by 56 percent. In women 60 to 65, HIV doubled by 53 percent, and in women over 65, the rates tripled. Currently, women over age 50 make up 10 percent of women living with HIV.
There are many reasons that the rates among older women continue to rise. Many Black women who are 40 and older do not see themselves at risk and don't take precautions like using condoms. In addition, the older woman's physiology may put her at increased risk. Menopausal and postmenopausal women often experience vaginal-wall thinning and dryness, which could cause small tears and create more opportunities for HIV to permeate the vagina and enter the system. Advocates say that creating more effective education and awareness for older women will help, as will building a safety net for the growing number of women who have to figure out what to do after they hear "You have HIV/AIDS."
But Davis says that it isn't always easy to find support services and help for those women. "Even though I was shocked by the news, I read everything I could get my hands on," she says.
"My doctor said, 'Trust me,' and that was hard. I had already trusted my life to my husband, who knew he had HIV before we got married and didn't tell me, " she says. But she has formed a partnership with her medical team. "I had a hard time at first, but I decided that I was going to live."
Kaye McDuffie works at Lansing Area AIDS Network in Michigan, working primarily with Black and Latino people living with AIDS, as well as doing awareness, outreach and advocacy to prevent HIV/AIDS. She spends a lot of time talking to women in their 40s and beyond about protecting themselves. "Women over 40 are definitely at risk, and few understand that risk. Being married or in a committed relationship is no guarantee that you are not at risk," McDuffie says. Sometimes the women have no idea that their partners are engaged in other relationships, she adds.
Davis's story is repeating itself with other women of color around the country. Daphne Robinson had to navigate the waters of dating after she and her husband of 20 years divorced. She fell in love with, and moved in with, a man several years later. "It was one day, when I was cleaning up the house, that I found some loose pills on the floor. And as far as I knew, he wasn't on any medication," she says. After taking the pill to her pharmacist to find out what it was, she got shocking news. "The pill was for AIDS, and my pharmacist told me that I should get tested right away, and I did," she says. "But I just knew the answer."
Two years after Robinson got her HIV-positive diagnosis, she got enrolled in services and started taking medications. "I was ashamed, and the stigma was overwhelming," she says. She has obtained support and guidance from other women who attend the clinic she goes to for medical care. Hearing from them helped her step out to support other women through groups. "I didn't do anything wrong. I just loved someone," she says.
In addition to using protection, testing is key for all women. Sexually active women should be tested for HIV at least once a year. An estimated 20 percent of the 1.1 million people living with HIV/AIDS do not know that they have the disease. Treatment has proved to be lifesaving and can prevent the transmission of the virus to others.
The next real horizon for Black women, no matter what their age, is creating both formal and informal networks and lifting the stigmas that keep them from accessing care. "Sheroes" like Nell Davis are becoming the voices for Black women who have been all but forgotten in this epidemic.
Andrea King Collier is a multimedia health journalist and lead author of The Black Woman's Guide to Black Men's Health_._