Miami Herald (MH) - Sunday, July 28, 1991
Elinor Burkett; Herald Staff Writer

Juana is nobody's image of AIDS.

She's a 57-year-old grandmother, a factory worker who spends her weekends in pursuit of the perfect rumba.

If the conventional wisdom about AIDS were correct -- that it is a gay disease, that only the young and promiscuous need to protect themselves against it -- Juana would not be dying. She would be playing with her three grandchildren instead of worrying about her T-cell count. She would not be cursing the ex-boyfriend who never mentioned he was HIV-infected. She would not be hiding her doctor's visits from her children.

But the conventional wisdom does not account for Juana -- or the other 19,000 Americans older than 50 who have been diagnosed with AIDS. They represent 10 percent of the nation's AIDS patients, according to the Centers for Disease Control, and two-thirds of them already have died. An estimated 150,000 may be infected with HIV, and most don't know it. No public health agency has made it a priority to warn the millions of older Americans who remain sexually active about the risk of infection or remind them to use condoms.

"No one has any reliable estimates of how many older people are at risk for AIDS because they have received no attention," says Dr. Wayne C. McCormick, a gerontologist and AIDS specialist at the University of Washington Medical Center in Seattle. "Older AIDS patients are simply invisible."

But they're there. The number of Floridians older than 50 diagnosed with AIDS has doubled over the past two years, to 2,000, according to statistics from the state's AIDS program. Every year, the percentage infected through sexual intercourse rises, while the number infected through blood transfusion drops, the CDC reports. Every year, the percentage infected through heterosexual sex rises even more steeply.

According to the CDC, neither of the nation's oldest recorded AIDS patients, men diagnosed at ages 83 and 86, contracted the virus through transfusion.

Nonetheless, this group -- the 60 million Americans older than 50 -- are the least likely group to be well-informed about the disease, surveys from the National Center for Health Statistics indicate. They are the least likely to be tested for the virus that causes it.

They also are the least likely to be diagnosed at an early stage -- and thus are the most likely to die within weeks of finding out they are infected. More than one-quarter of all AIDS patients diagnosed in their 70s die within a month, according to a study published in the April issue of the Journal of Acquired Immune Deficiency Syndrome. Among the young, the figure is 10 percent.

"Some of the problem may be the immune deficiency in the elderly," says Dr. Karl Goodkin, a professor of psychiatry at the University of Miami. "But I expect the much more important problem is that physicians simply aren't thinking about AIDS in their older patients, simply aren't testing them for it." Goodkin is a researcher at the Biopsychosocial Center for the Study of AIDS.

As the number of older AIDS patients grows, researchers have begun to worry about how to educate physicians to distinguish between AIDS-related dementia and Alzheimer's disease, between other AIDS symptoms and the classic ailments of aging. They hope to sort out the problems of interactions between the toxic drugs used to treat AIDS and the drugs older patients get for weakening hearts, arthritis and ulcers.

They haven't gotten far. There is, McCormick and Goodkin agree,, no body of professional literature. More has been written about the nation's 2,549 children younger than 5 with AIDS than about those older than 50, who are almost eight times as numerous.

"No physician sees enough older AIDS patients to make any good conclusions," McCormick says. "Even the AIDS specialists have few answers because most older AIDS patients never make it to a specialist."

Few even make it to one of the nation's AIDS support programs. In the eight years she has been involved in AIDS work, Doris Feinberg, founder of Body Positive, a Miami community center for AIDS patients, has met four older people -- out of thousands.

One was a 60-year-old man infected through extramarital sex who came looking for experimental drugs. He still turns up at the weekly informational forum that Body Positive sponsors. There have been two Holocaust survivors -- a man infected in a blood transfusion and a woman who contracted the virus through intercourse with her husband, who also received a contaminated transfusion.

The only one of the older patients who has become part of the center's activities is Allen, a frail 56-year-old gay minister who was infected sexually. Since testing positive with HIV, he has never been seriously ill. But he says his doctor is "waiting for something to happen." Like the other AIDS patients interviewed for this story, he asked that his name not be used.

Allen comes to the center a few times a week for a cup of coffee and to help out with the newsletter. He shows up every Saturday for a support group. But even in jeans and Reeboks, he looks out of place among the young men who organize everything from dances for AIDS patients to demonstrations demanding more funding for research.

Why does he hang around? "These are the only people other than my doctor who know I am living with AIDS," he says.

Allen is typical, Feinberg believes.

"They are all absolutely isolated and their needs are absolutely ignored," she says. "They hide, they don't accept the fact they have the disease because the disease is still not acceptable."

Meet Ruth, one of Broward's 3,090 AIDS patients. The 77-year-old lives alone with her secret in a small condominium in North Broward. She spends most of her time looking out her window on a world that seems increasingly hostile.

When she had heart problems or ulcers, she could share tales of her latest medical procedure with her neighbors. But no one at bingo is discussing who's the best AIDS physician in town.

From time to time she hears her neighbors talking about AIDS. She flees. She can't forget the day one man said: "If I knew someone had AIDS I wouldn't even look at him."

Ruth, who believes she was infected during a transfusion in 1984, assumes there are others like her; after all, thousands of older people had blood transfusions in the years before the blood supply was tested. Some of them must have transmitted the virus to their sexual partners. But Ruth has no way of finding them.

Only her physicians and her two children know what she discovered three years ago. The grandchildren must not be told, she has insisted. She has not been ill enough for them to notice anything -- yet.

"Everyone thinks it's so hard telling your parents you have AIDS. Imagine telling your children."

Ruth does not call her 55-year-old son or her 47-year-old daughter when she is afraid. "It would upset them too much," she says, the habits of decades of motherhood deeply ingrained. "I'm a meshugenah mama."

To avoid crying in front of a stranger, Ruth scurries around her living room pointing out family photographs. Perfectly coiffed, dressed in hand-painted culottes and a T-shirt, she talks about her children and grandchildren's triumphs.

The tiny condo -- a comedown from the elegant home in Fort Lauderdale she used to own -- is a stretch on her $675 monthly Social Security check. Medicine alone -- pills for blood pressure and ulcers, heart problems and AIDS -- runs almost $6,000 a year. Medicare does not cover prescriptions.

The only place she can begin to unburden herself is at her Tuesday night support group at Center One, a community center for people with AIDS in Broward.

"When I first went there I looked around at all these kids who've been drinking and on drugs and thought, it's not my cup of tea. But you have to go somewhere.

"One young man looked at me and said: 'You're not a candidate for AIDS.' Now when I walk in they say: 'Here comes Grandma.'

"I still long for someone in my age group. But the people my age who know they have HIV hide under a pillow. I have no friends. I can't trust anybody. . . . So I'm left being friends with kids 18 or 19, and I don't have much in common with them. All that talk about drinking, drugs and sex. What does this have to do with me?"

One young man asked her if she was sexually active.

"Sexually active, sexually schmactive," Ruth replied. "Get out of here with your sexually active."

Ruth's husband of 57 years died eight years ago. He suffered from Alzheimer's for a decade.

"They'll find a cure in a few years," she says. But Ruth wonders if she has a few years left.

"I try not to think about it," she says. "I look out the window. I play bingo to get out of the house. I try to avoid thinking at all. There's no sense crying. When you cry, you cry alone.

"But some days I hate myself. What did I do to deserve this? This is a terrible disease. You wind up plain bones. This is a terrible way to die."

Safe sex pamphlets flood the bars and discos where young sexually active people meet. Condoms are distributed in clubs where they gather.

But there are no safe sex brochures in the lobbies of the condos where older sexually active people meet, no condoms in the rec room bathrooms.

When the National Center for Health Statistics surveys adults about their knowledge of AIDS, those older than 50 are the most likely of all groups to say they "know nothing." They are the most likely to believe you can catch the AIDS virus by working next to someone who has it.

They are the least likely to consider themselves at risk. They are the least likely to be tested. They are the least likely to know about condom use as a way to minimize the risk of transmission.

"Condoms? Why would I have used condoms?" Juana says when asked if she had practiced safe sex. "It's not that I thought about it and decided not to. I never thought about it.

"Women of my age aren't at risk for AIDS. It's a gay man's disease. . . . That's how I used to think."

Juana, who lives in Hialeah, found out differently when she and her boyfriend decided to get married. They went for HIV testing in 1985 and both turned up positive. She blamed him. He blamed her. There's no way to be sure. The relationship broke up.

Juana's children have no idea she has AIDS. They probably have no idea that she's still sexually active, she says.

That's a common illusion. Although few thorough studies have been done exploring the sexual lives of the elderly, some points are clear, according to researchers at the National Institute on Aging: Older Americans continue having sex well into their 70s. Monogamy is not universal. The unmarried do not abstain. Golden Swingers Clubs flourish in many cities. Older men are among prostitutes' best customers.

Look at a single survey of 71 college-educated Americans, ages 65 to 78, during an Urban Elders university program in California. Half of the women and 92 percent of the men were still sexually active. Although 12 percent had received blood transfusions in the critical years just before blood testing began, none had been tested for the AIDS virus. None used condoms.

"Someone needs to reach out to older Americans to educate them about AIDS and warn them of the risks," says Matilda White Riley, associate director of Behavioral and Social Research at the National Institute on Aging. "This is a particularly vulnerable group."

Still, the National Clearinghouse on AIDS' resource list includes no educational materials targeted to older audiences. Stephen Kindland, spokesman for HRS' AIDS program: "We have done some mondo condo condom giveaways, but the 50-plus age group isn't a priority."

The problem of education reaches into the offices of the physicians who treat the elderly, too, says University of Washington gerontologist McCormick.

"Those doctors see a person with a general complex of diseases of the aging, with fevers and fatigue and diagnose them with common diseases of the elderly," he says. "And the reverse often happens, too: When they know a person is HIV positive, they forget common diseases still occur -- problems with arteries, arthritis or the heart -- and they misdiagnose them as AIDS-related."

McCormick's best example is an 84-year-old Seattle woman who showed up at a hospital emergency room complaining about weight loss, fatigue and night sweats -- classic symptoms of HIV infection.

"No one even considered the possibility," he says.

She kept coming back with the same complaints. She even mentioned the word AIDS. "The doctors passed off the idea as ridiculous the minute they found out she'd never had a transfusion." he says. "Who thinks about an 84-year-old lady engaging in risky behavior?"

When the woman turned up with toxoplasmosis -- a brain infection common to AIDS patients -- she was finally tested for HIV and turned out positive. "How can this be?" the physicians asked themselves. Embarrassed to quiz an elderly woman about sex or drugs, they sent in psychiatrists to find out.

"She worked as a prostitute until almost her 80th birthday," McCormick recalls.

"When faced with an AIDS diagnosis, the young are angry, determined to live, to beat the disease," says Body Positive's Feinberg. "When faced with an AIDS diagnosis, older people give right in. The young refuse to think of themselves as victims, they become fighters. Older people simply stay home and die."

Allen, the minister, does not think of himself as a victim. If he's not an activist like others at the center, it is simply because he is more philosophical, he says.

"Maybe people think that someone of my age should be ashamed of himself. Maybe they think because I'm older I should have known better.

"But I say to myself: If this is the end, I have no regrets. I've been successful in my career. I've always been independent. I feel accomplished."

Ruth is certainly not waiting to die. It's just that she has a different way of coping, she says. Young people tend to become experts on their disease, to follow every change in their blood work and challenge their physicians.

Ruth receives no AIDS newsletters; she watches television for news on the latest developments. She visited an AIDS specialist once but went back to the doctor who has treated her for years. She follows his instructions religiously, even waking up at 2 a.m. to take her medication on time. When he tries to tell her what the results of her blood work show, she's not much interested.

"I don't want to know. I tell him, 'You're the doctor. Just tell me what to do.' "

But she, too, is angry at what she believes is government -- and society's -- indifference to her plight. "They need to take an interest, even a little bit of interest, in all of us, but especially in the older people, even in people like me who are not promiscuous.

"They've done nothing to change the attitudes of my neighbors. They've done nothing to help me. But I'm not ready to give up. I say, 'God, be good to me, let me make it.' "

Then there is Juana, who is dealing with AIDS like many of the younger crowd. No philosophical acceptance for her. No hand wringing. She still works. She still drinks. She still goes out dancing in small clubs. She is in school studying English. She has a new boyfriend.

Are they practicing safe sex?

Absolutely, she says. No intercourse at all.

"It's not necessary. He has a good imagination."

TO GET HELP

Several AIDS support centers would like to form groups for older AIDS patients. If you are interested call:

* Body Positive Resource Center, 175 NE 36th St., Miami, 576-1111, between noon and 10 p.m. weekdays.

* Center One, 2518 West Oakland Park Blvd., Fort Lauderdale, 485-7090, 8:30 a.m. to 5:30 p.m. and 6:30 to 10:30 p.m. weekdays.

* Comprehensive AIDS Program, 3706 Broadway, West Palm Beach, (407) 687-3400, 8:30 a.m. to 4:30 p.m. weekdays.

CAPTION: PHOTO two hands (AIDS*)

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