As the general population in Maine gets older, so do Mainers living with HIV-AIDS. Because new cases are holding fairly steady at about 50 a year, and because people infected with the Human Immunodeficiency Virus are living longer thanks to new drug treatments, about three-quarters of the roughly 1,220 infected Mainers are more than 40 years old. About a third are older than 50.

Jean Lavigne of Orono contracted HIV in 1985 from her husband, who was a hemophiliac, when she was 27. Her infant son also was infected.

“I was told to get my affairs in order, because I would probably die in two years,” she recalled, speaking at a University of Maine conference on Friday.

Lavigne’s husband died with Acquired Immune Deficiency Syndrome (AIDS) in 1990 – followed by his brother, his brother’s wife and their 1-year-old child – but she and her son, who is completing his college education, are testimony to medical progress in managing the virus.

Maine’s HIV-AIDS numbers are relatively small, but they correspond to national trends, according to Mark Brennan, senior researcher at the AIDS Community Research Initiative of America, which is based in New York City. Brennan was the keynote speaker Friday at “A Graying Epidemic: HIV/AIDS and Older Adults,” a half-day conference hosted by the University of Maine Center on Aging and the University of Maine School of Social Work.

Beginnings of outbreak

The outbreak of HIV first was recognized in the early 1980s, primarily as a sexually transmitted disease among young gay men. The virus is also spread through unprotected heterosexual contact, sharing needles during intravenous drug use, and from mother to child during pregnancy and in breast milk. Before 1985, blood transfusions were another frequent source of infection.

In 1995, the number of Americans older than 50 with AIDS – the lethal late stage of HIV in which individuals lose the ability to ward off even common infections – was only about 20,000, Brennan told the conference participants. By 2005, the number had ballooned to more than 120,000 Americans.

Death sentence no more

That’s actually good news, a reflection of advances in medicine that have changed an HIV diagnosis from a death sentence to a chronic health care challenge, he said. But on the far end of that challenge lies old age and its attendant problems, many of which are compounded by a diagnosis of HIV-AIDS.

“What will happen as they continue to age? Who will take care of them?” Brennan asked his audience, most of whom were social workers or other professionals. “When we ask people, ‘Who’s going to take care of you,’ they say, ‘my friends will.’ But more than half of their friends are infected, too. And the long-term care environment is really not prepared to deal with this. It’s going to be a real problem.”

The HIV-AIDS population resists easy characterization, Brennan said. But a recent study conducted by his organization found that many affected individuals suffer from social isolation and loneliness, especially as they get older. Depression is a common complaint, and medical studies show that a diagnosis of HIV-AIDS predicts the relatively early onset of age-related conditions such as arthritis, high blood pressure, diabetes and cardiac conditions.

A high percentage of affected individuals currently use tobacco, alcohol and other drugs, and an even higher percentage are in recovery from those habits but may still suffer from their long-term ill effects.

After Brennan’s presentation, a four-person regional panel shared personal reflections on the HIV-AIDS outbreak in the United States.

“I hope to be around for a while,” said Ron King, an HIV-positive artist, farmer and retired AIDS program coordinator from Penobscot. King said social stigma against homosexuality remains a primary barrier to people getting tested and treated early in their infection. A diagnosis of HIV “potentially doubles the discrimination” already associated with old age in this country, he said.

Continuing progress

AIDS activist Lavigne said that while she is grateful for the medical progress that has allowed her to live into her fifth decade, it has been “a roller coaster.” Medications that have been effective in managing the virus have caused serious complications for many people, she noted, ranging from chronic diarrhea to heart problems.

She recently suffered a heart attack, she said, and is waiting for “the next big thing” from pharmaceutical researchers.

Lavigne discussed how the health care system has changed over time in its response to the virus. For example, when her 1-year-old nephew died at Children’s Hospital in Boston, the family could not find a funeral home in their home state of New Hampshire that would handle his body. That situation wouldn’t happen now, she said.

Wayne Moore, a social worker at The Acadia Hospital, drew laughs when he said he “grew up in a typical small-town Maine family, with three daughters and three gay sons.” His older brother died of AIDS in 2000, he said, and was nursed through the final ravages of his illness by their widowed mother. “It’s not something any parent expects to be doing,” Moore said. His twin brother also is infected, he said.

Latona Torrey, a social worker with the Regional Medical Center at Lubec and a former ranger at Baxter State Park, said the HIV-AIDS epidemic sparked at least two new trends: men providing intensive, intimate, end-of-life care for their dying friends and partners, and – as treatment has improved – the development of valuable, long-term relationships between infected individuals and their physicians.

More about HIV-AIDS in Maine is available from the Maine Center for Disease Control and Prevention at www.maine.gov/dhhs/boh. Information about the AIDS Community Research Initiative of America can be found at www.acria.org.

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