October 29, 2001

Older HIV patients given a voice

Seniors with disease also fight age-related stigma, activist says

Like many women of her generation, Jane Fowler lost her virginity on her wedding night. She remained faithful to her husband for 23 years, so it was awhile after her divorce that she warily ventured out as a single woman, dating a family friend she had known a long time.

Five years after a New Year's Eve date, Fowler was diagnosed with HIV, the virus that is often a precursor of AIDS. She discovered she was infected when a health insurance company rejected her application for coverage.

Today, at 66 years old, Fowler is deep into her new life's work, running the National Association on HIV Over 50 and speaking around the country about being older and infected with a virus that is stigmatized as a disease of intravenous drug users and promiscuous homosexuals.

"We're fighting the stigma of ageism as well as having a sexually transmitted disease," she said. "In our culture, older people aren't supposed to be having sex. It's like you die from the neck down."

On Tuesday, Fowler, a resident of Kansas City, Mo., will speak on HIV and AIDS prevention at Congregation Shaarey Zedek in Southfield. The event is sponsored by the synagogue and the Michigan Jewish AIDS Coalition. It is open to the public.

By now, some 20 years after the medical establishment identified the virus that was mysteriously killing gay men, people like Fowler are living much longer with the help of retroviral medicines. But the rate of AIDS infection in the 50-plus population has climbed. They now represent 10 percent of all cases, according to the Centers for Disease Control and Prevention.

As of July, there were 471 cases of AIDS in people over 50 in Michigan, or about 10 percent of the total, and 299 people over 50 with HIV, or just over 5 percent of all cases, according to the Michigan Department of Community Health's HIV/AIDS Prevention and Intervention Section.

Earlier statistics do not exist for the 50-plus population because most people with the disease died before they reached middle age, said Belinda Chandler of the Michigan Persons Living with HIV/AIDS Task Force.

Victoria Smith, a brief case manager at the Visiting Nurse Association of Southeast Michigan, said her older HIV/AIDS patients also do not cope as well with the side effects of the toxic medications used to treat the virus.

"They're not as savvy either on what's available, because they are older. They aren't in support groups like younger people and aren't able to get out. They don't fit in," she said.

Fowler, a former journalist who worked for the Kansas City Star newspaper for 18 years, isolated herself for four years after her diagnosis in 1991.Her son, Stephen Fowler, urged her to get out of her apartment and use her talent for communication to talk about prevention. And she figured she didn't have much longer to live.

"I thought, 'What had I done wrong but have sex'? I made a mistake; I didn't feel the need to use protection. It just came over me that if I spoke out, I might prevent someone else from being infected," Fowler said.