Facing Middle Age and AIDS

With a jangle of bracelets, Patricia Shelton slid her chair in front of the air-conditioner in her daughter's apartment and fluttered her hands to cool her face.

"I swear, some days it's the menopause that gets me, not the H.I.V.," she said.

At 51, what she calls "being H.I.V." never really gets her. She has known she was infected since 1990, "the same time Magic Johnson announced to the world."

She is still on the two-drug regimen she started on, and her viral load is too low to be detected. But she leads workshops for older infected adults, and "I know I am very blessed," she said. "Some of them are on their fourth regimens, get bouts of PCP pneumonia, rashes, herpes, diarrhea."

In her 20's and 30's, she was a "closet heroin addict," keeping a Wall Street secretarial job, raising her children, not losing control. "A lot of us who had a past are happy housewives now, are mothers and grandmothers, are productive members of society," she said.

The infection lingers, but she has proved wrong the doctor who told her in 1990 that she had two years to live.

Although AIDS is thought of as a disease of the young, in the United States it is rapidly becoming one of the middle-aged and even the old. The number of Americans over age 50 infected with the virus that causes AIDS quintupled during the 1990's, "and a conservative estimate would be that there are more than 100,000 now," said Dr. Marcia G. Ory, a professor of public health at Texas A & M University and co-author of a 2003 report for the Centers for Disease Control and Prevention on AIDS in older Americans. Unless there is a new explosion of the disease among teenagers, demographers estimate, the majority of cases by the end of the decade will be in people over 50.

In New York City, the curve has moved even further. About 64 percent of the city's cases are over 40 right now, the New York City Department of Health said, and about 25 percent are over 50.

The medical and social ramifications of this shift are already becoming evident, particularly as the cost of care escalates.

"There will be some reality checking very soon," said Dr. Stephen Karpiak, research director at the AIDS Community Research Initiative of America, or Acria, a nonprofit group based in New York that does surveys and clinical trials. "People are already being assigned to nursing homes at age 55. That gets very expensive."

In large part, the changing demographic of the disease is a testament to medical progress. Thanks to a growing armory of antiretroviral drugs and advances in the way secondary infections are fought, the infected live longer. Many have heard from their doctors words that are strangely gratifying: You're getting old, and you'll die of something, but it won't be AIDS.

The increase is also, in part, statistical. Very few newborns now get the virus from their mothers, and very few hemophiliac children get it from blood products, so the average age of the infected has climbed. But there is a countervailing pressure; blood transfusions were once a major cause of AIDS among those over 50, and that risk has all but vanished.

There is also a new pool of cases, those who contract the infection later in life. In a 1999 C.D.C. survey, 44 percent of infected people aged 60 or over did not know how they encountered the virus. Only 30 percent of those under 50 did not.

Dr. Karpiak's team has interviewed 160 infected people over the age of 50 and plans to interview 1,000 more to assess the challenges of treating older patients. The preliminary results uncovered some problems.

For example, 71 percent lived alone. "That really struck me," Dr. Karpiak said. "That's the antithesis of the regular population, where 30 percent live alone."

More than half said they were not dating. Although most had living children, siblings or parents, only 23 percent said they looked to them first for emotional support or for help with chores like going to the store or changing a light bulb. More asked friends, and 26 percent said they relied on themselves or no one.

In Dr. Karpiak's survey, 79 percent said they needed more help with daily tasks like cooking, cleaning and transportation. Depression, inability to get out and forgetfulness about pill-taking may speed their declines.

Gay elderly people often have no children, and former addicts may be estranged from their families. In both groups, many may have already buried most of their old friends.

"That's me," Dr. Karpiak said. "I'm a 57-year-old gay male. My peers are gone. My social network was zapped."

Poverty is another problem. About 60 percent in Dr. Karpiak's survey said they had "just enough money to get by," while another 9 percent said they could not make ends meet.

The city health department said 72 percent of New York's infected over 50 were on Medicaid. While less generous states have waiting lists for people needing help with paying for antiretrovirals, any infected resident of New York City is eligible for a raft of services. The homeless get apartments without having to stay in shelters. Nine centers run by the Momentum Project offer two meals a day, free groceries and subway fare, counseling, job training, and medical and dental care.

For those earning less than $30,000, a diagnosis leads to hospital care under Medicaid and antiretroviral drugs subsidized by the Ryan White Act. Social Security disability payments provide some income. That makes some AIDS patients complain that some of the uninfected are jealous. "People say, 'You've got it made, girl,' " said Helen Hernandez, who lives in the West Farms section of the Bronx. "They say they'd do better if they were infected, and they ask if they can buy your M11Q," she added, naming the city form that confirms the diagnosis.

There are medical challenges in treating this population. Older people take more medications, and drug interactions are magnified by toxic antiretrovirals. Older patients are also more likely to have heart disease or diabetes, and some antiretroviral drugs tend to drive up cholesterol or interfere with the way insulin is metabolized.

Some antiretrovirals strain the liver, and many older people have livers damaged by alcohol and the hepatitis that comes with drug use. And antiretroviral drugs may also exacerbate problems with the peripheral nerves needed for walking or opening jars.

Also, a recent study at the University of California, San Francisco, indicates that aging AIDS patients may have an increased risk of dementia as the virus allows the plaques associated with Alzheimer's disease to accumulate.

Older patients tend to be more forgetful anyway, which is dangerous because each lapse in taking pills on time increases the chances of developing a drug-resistant strain.

Meanwhile, efforts at prevention are complicated. Ms. Shelton said that in the discussions she leads, ignorance about sexual activity was common. Once when she led a group, she said, "People were asking me, 'Do people over 50 have sex?' and I said I gave somebody's dad condoms, and he was 83!"

Public health advertisements promoting condoms are usually aimed at the young, and as Kathleen M. Nokes, a nursing professor at Hunter College and chairwoman of the New York Association on H.I.V. over Fifty has pointed out, a postmenopausal woman cannot use fear of pregnancy to ask a man to use a condom, but "the virus doesn't care how old you are."

To some women, the news that they are infected comes as a shock because they have been faithful to husbands they thought were too.

Also, experts say, older people are less likely to admit to doctors or survey-takers that they engage in homosexual sex or extramarital sex. And doctors are less likely to ask older patients about their sex lives.

Doctors are also more likely to misdiagnose AIDS symptoms in the elderly. Shingles, for example, may be seen as a disease of aging. Night sweats may be written off as a symptom of menopause. AIDS dementia looks like Alzheimer's disease. Pneumocystis pneumonia can be mistaken for congestive heart failure.

Several studies have found that people over 50 are more likely to discover they are infected later than average, when they are severely immuno-compromised. Also, their survival after diagnosis is usually shorter.

A study done in 1992, before antiretroviral drugs were widespread, found that older people typically died within six months of diagnosis, compared with 16 months for younger people. As with flu, deterioration seemed to be faster in the old; specifically, they lose CD-4 immune-system cells faster.

Yet a survey done for the National Institutes of Health in 1997 found that many older patients felt that their arthritis, heart disease and diabetes were greater burdens than their H.I.V. infections. Dr. Karpiak's survey found similar results. Many in it had hepatitis C, nerve damage, arthritis, high blood pressure, diabetes, and vision and hearing problems.

"For a lot of the people we see, AIDS is not the most important thing in their lives," said J. Daniel Stricker, executive director of Acria. "A grandmother in the South Bronx may be taking care of her kids' kids, and be more worried about food and shelter and just getting through the day."

Despite facing serious problems, many older AIDS patients say they are relatively optimistic. In the Acria survey, about two-thirds reported some symptoms of depression, and most had sought treatment for it. Nonetheless, 78 percent said that, over all, they were somewhat or very satisfied with their lives.

Ms. Shelton said she hoped to live as long as one of her aunts. "She was 100-and-something," she said, "and still walking to the store."

New York Times

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