Patients Over 45 Are Often the Forgotten AIDS Victims

They are the forgotten AIDS victims:

An 89-year-old widow who spends a month at New York’s Mount Sinai Medical Center before baffled doctors ever test her for the AIDS virus.

* A 56-year-old Atlanta man whose 76-year-old mother collapses while caring for him and dies just after he does.

* A 48-year-old Atlanta man who won’t tell his parents he has AIDS for fear it would kill them.

Twelve years into the epidemic, the nation is beginning to address older Americans with the deadly virus and the even older relatives who care for them.

“It’s a multi-generational crisis and we’ve been slow to realize that,” said Judy Fink of the American Assn. of Retired Persons, which is launching AIDS education for its members.

Of the 289,320 AIDS cases diagnosed by April, 18% were 45 or older. AIDS is growing fastest among that population.

But support groups, education programs and other social services targeted to older AIDS patients are rare, and even doctors hesitate to question or test older patients, experts say.

“They’ve been largely ignored, and that means they’re suffering more and probably spreading the virus more,” said Dr. Christopher Allers, an Atlanta gerontologist.

The few studies done show older Americans are at risk: They had thousands of transfusions before blood was tested for the virus; poor diabetics tend to share insulin needles; and they’re sexually active well into their 80s but seldom use condoms or discuss sexual histories.

Most of the nation’s AIDS patients are under 45--the age line many doctors use because the immune system begins to decline in the late 40s, making the body more vulnerable to AIDS.

But new cases among young people have dropped steadily in the last three years, while cases among older people are rising between 8% and 10% annually, said Dr. William Adler of the National Institutes of Health.

Those new cases and medical advances that extend their lives are pushing the median age of AIDS patients up every year, he said.

The nation’s primary AIDS care-givers are victims’ parents. The older the patient, the older and often sicker the parent, Allers said.

He cites the case of Martin, 56, who moved in with his parents when AIDS depleted his savings. His mother died just after he did, and his 81-year-old father was sent to a nursing home.

“It was real clear that Martin took a lot of blame for their problems,” Allers recalled. “There are HIV-infected and HIV-affected . . . and it’s no easier for either side.”

Michael, 48, of Atlanta decided never to tell his family about his AIDS diagnosis last year.

“My parents are elderly and sick and they didn’t need the added stress,” he said.

Because Michael visits only when he’s well, his parents don’t suspect he’s infected. His roommate nurses him through spells of pneumonia.

But he’s unemployed, his insurance is about to run out and his few assets won’t last long. He would qualify for public assistance only if a family member moved in to take care of him; non-relatives like his roommate don’t qualify.

“I was hoping to be able to maintain dignity with my medical care. . . . But I won’t burden my family,” Michael said. “Making them suffer would be worse, I think, than getting diagnosed.”

Dr. Wayne McCormick of the University of Washington says many nursing homes refuse AIDS victims, and even AIDS activists fail to realize there are so many older patients.

McCormick helped open a nursing home for AIDS victims in Seattle last year. Bailey Bousha House provides housing, medical care and counseling.

“Without the nursing home, they’d have to go to a hospital, which is much more expensive,” he said.

Fink of AARP contends that more troubling than these social issues is that most graying Americans think they’re immune from AIDS.

AARP created an educational video and AIDS fact sheet that it is distributing to its members. Because the stigma of AIDS seems to be greater among older Americans, AARP sees its effort as one of counseling a grieving family as much as education.

“An AIDS death in the family is traumatic, but more so because they have nowhere to turn,” Fink said.

Next is getting general practitioners--the doctor of choice for the elderly--to avoid the myth that the elderly are immune from AIDS, say McCormick and Allers.

The 89-year-old widow at Mount Sinai is an example. Her doctors wrote the Journal of the American Geriatrics Society that they were reluctant to question her sexual history because of her age. After discovering her late husband was an intravenous drug user, they tested her for AIDS, but by then she was too near death to save.

“That’s probably not an unusual case,” McCormick said. “We just don’t tend to think of AIDS in the elderly.”