En español | It announced itself among the young. Five otherwise healthy men in Los Angeles had been stricken by a rare, debilitating form of pneumonia. Baffled doctors reported the news in June of 1981, and, soon after, other scientists revealed a medical mystery of their own: young men with a skin cancer usually found among the elderly.
See also: 5 breakthrough AIDS treatments.
Within 18 months, the federal government linked the afflictions to a new disease that it named "acquired immune deficiency syndrome," or AIDS. By 1983, when scientists isolated the human immunodeficiency virus (HIV) as the cause, 1,300 Americans had died — most of them under 40. Thirty years on, though, AIDS is increasingly a disease of older people, who make up the fastest-growing segment of the HIV-positive population. Of the estimated 1.1 million Americans with HIV, some 407,000 are over 50; by 2017, half of the total HIV-positive population will be over 50. New treatments have allowed many patients to live far longer, and far better, than they could have in the early days. But the aging of AIDS is not simply a result of new treatments. Shockingly, one in seven new diagnoses of HIV or AIDS is in a person over 50.
"The burden of this disease is going to be borne out in the older adult," says Stephen Karpiak, Ph.D., of the AIDS Community Research Initiative of America (ACRIA) in New York City. And the health care system will feel its impact. Older people with HIV contract more diseases of aging than their uninfected peers — even when the virus has not progressed far enough to warrant a diagnosis of AIDS. And though HIV is often transmitted by sharing hypodermic needles, older Americans are more likely to get it through unprotected sex. Many think condoms are only for preventing pregnancies — or that a partner over 50 is less likely to have the disease.
Longtime survivors say the graying of AIDS creates a new set of unknowns. "It was like walking into a dark forest," says retired designer Bradford Branch, 59, recalling the early days of the epidemic. "It's kind of like that right now. We're older and HIV-positive, and we have no models for what we're going through." The landscape has changed: HIV/AIDS is not the gay, white disease of yore. It affects more African Americans and Latinos, more straight people, more of the poor.
Still, while people with HIV/AIDS face daunting challenges, they are by and large alert, hopeful — and fully alive. We met several who have confronted the disease and emerged with a clearer sense of what life is all about.
"Doctors had spent years telling me I had Epstein-Barr virus or leukemia or chronic fatigue syndrome," recalls Pamela Yelsky, 51, of Redondo Beach, California. "They didn't even think about AIDS until much later." That was ironic, since Yelsky's own stepson had the disease, contracted from tainted blood during surgery. Yelsky cared for that boy, Beau, even as years of shingles and yeast infections wore her down.
"Most women today don't feel they're at risk. All that denial is just shocking." — Pamela Yelsky, 51
In 1992, when diagnosed with AIDS, Yelsky realized she had contracted the virus at 21, through unprotected sex with a man she thought she'd marry. Yelsky got on the merry-go-round of harsh drugs then available, which would eat away at her bones, give her a humped back, and add 30 pounds of fat to her torso. Two years after her diagnosis, she was so sick that she had to stop working at her job as a loan auditor. Stepson Beau endured many of the same difficult treatments, and five years ago, at age 24, he succumbed to lymphoma brought on by HIV, a devastating blow for her and her husband, Jerry.
Three years ago Yelsky began a next-generation treatment called highly active antiretroviral therapy (HAART), a combination of drugs that target different parts of the virus. It does not work for every patient, but many enjoy renewed vigor and few side effects. For Yelsky, "it's a miracle," she says.
But she worries that improved treatments feed a sense of complacency about the disease, particularly among women. "Most women today don't feel they're at risk," says Yelsky, who speaks about HIV at high schools and colleges. "Seeing all that denial 30 years into the disease is just shocking."
The feeling was unshakable. For two weeks Lee Fischer, then 60, suffered chills and weakness, and watched his rangy frame whittle itself down from 185 pounds to 165. He visited his doctor in Wilmington, Delaware, where he worked as a chemist, and confirmed his suspicion: He was HIV-positive.
Fischer knew all about AIDS — he had delivered meals to people with HIV in the 1990s. Back then he was in a committed gay relationship, and he and his partner got tested regularly, though they used protection. But shortly before his diagnosis in 1997, the now-single Fischer had indulged in a fling while on vacation in Seattle. That one time was enough.
Epidemiologists have long known that sharing needles can transmit HIV. But they have also found that people who use any sort of drug — even, like Fischer, a few too many drinks on vacation — are more likely to take risks that could lead to infection. And infected people don't always protect others. In a study of older HIV-positive people in New York City, one in three sexually active subjects had recently had risky sex.
Gay men remain the highest risk group for HIV overall, says Ronald Johnson of AIDS Action, an advocacy group in Washington, D.C. Men over 50 who were cautious when younger have reported "condom fatigue" — they tire of the decrease in sensation that condoms cause, Johnson adds.
Now 74 and living in Baltimore, Fischer is in good health, thanks to HAART and a regimen that includes yoga, meditation, gym visits, and dog walks. He drinks no alcohol. Micromanaging health can keep people with HIV alive longer. "Taking care of yourself is a 24-hour job," Fischer says.
He was the perfect specimen, an Adonis whose ability to twist his chiseled physique into breathtaking shapes made him a springboard-diving star. Greg Louganis was the face of diving during the 1980s, winning five Olympic gold medals.
But through every dive and television interview of the 1988 Olympics in Seoul, Louganis kept a secret: Six months before, he had tested positive for HIV — yet another gay man who came of age as AIDS was ravaging the gay community.
He retired soon after that Olympics to pursue other goals — acting and dog training — that seemed urgent; he thought he would soon die. A youth marked by depression fueled his fatalism. "As a teenager I had half expected to be gone by the time I was 30 anyway," Louganis, now 51, says with a laugh.
He came close. His weight plummeted from 180 to 135, the result of a fungal infection. Louganis was admitted to a hospital in Florida, where he paid his bill — tens of thousands of dollars — in cash, for fear that his insurer, and then the tabloids, would learn of his disease. But, little by little, his optimism grew. He came out as HIV-positive in a 1995 memoir and switched from training Great Danes, which usually live about eight years, to Jack Russell terriers and other, longer-lived breeds that he enters into agility contests.
Louganis does yoga daily and teaches diving in Los Angeles; his life partner, Daniel McSwiney, cooks him healthy meals. Louganis says aging has changed him: "Now that I'm in my 50s, I have a lot less fear and anxiety. I may have thought I'd be dead by 30, but I feel very much alive now."
Twenty years ago, when Sergio Farfán got a form of pneumonia so debilitating he could barely breathe, emergency room personnel in Baton Rouge, Louisiana, discovered that his immune system was effectively dead because of AIDS. "They gave me a 2 percent chance to live," Farfán says.
"They gave me a 2 percent chance to live. I began to prepare myself for death." — Sergio Farfán, 60
One doctor even told him he should go home and die, so people who could benefit from drugs wouldn't be shortchanged. "I went home and was incredibly depressed," Farfán, now 60, recalls. "Then I got really angry and went back to the hospital and told them I needed a new doctor." With medication, the architect — a native of Mexico City — regained his strength. Then, he became an activist, starting the Louisiana Latino Health Coalition for HIV/AIDS Awareness.
Latinos get HIV at 2.5 times the rate of whites. Most cases are the result of men having sex with men, as was the case with Farfán and a man he had met in Dallas. Once infected, many Latinos face barriers that others do not. Some immigrants don't speak English or are afraid of shaming their families by admitting their condition, Farfán says.
Then there are the limitations on HIV services in some southern states; for political reasons, funding them has not been a priority. "Ninety-five percent of people on the waiting list for HIV treatment are in the South," says Charles King of Housing Works, a New York City – based agency that finds housing, treatment, and job training for people with HIV.
Medication for HIV/AIDS is expensive: It can cost $1,000 or more per month. But allowing people to go without medication costs far more, if they become ill with one of the many complications of AIDS that can necessitate a hospital stay.
In the 1990s LaWanda Gresham thought she was living life to its fullest. By day she served food in Los Angeles school cafeterias. By night she lived for the streets, partying even though it alienated her from her daughter and granddaughter. "I call it 'the age of darkenss' now," says Gresham, 58.
In 1996, when her husband, Grover — an IV-drug user — got shingles, he was encouraged to get an HIV test. Gresham got one too, and both results were positive. As a black woman, Gresham reflects a grim reality: AIDS is a serious danger to the African American community. Black women are nearly 20 times more likely to get HIV than white women, and black people make up half of U.S. AIDS deaths each year, though they represent only 14 percent of the population.
Three years after Gresham's diagnosis, her husband died from AIDS and she went into an emotional tailspin. "It was all falling down around me," she recalls now. "I was having reactions to the medicine. I basically said to hell with it."
Depression is a common symptom of the disease. Older people with HIV/AIDS suffer depression at five times the rate of their unaffected peers. And depression keeps people from taking care of themselves. Gresham was too stoned or despondent to take her medications for about a decade.
Fortunately, a clinic doctor knew which button to push to get her treatment back on track. "He told me that if I wouldn't take the drugs he prescribed, he'd give them to someone who wanted to live," she says. She stopped doing street drugs and sought help for her depression. Now, she often returns to the streets where she once partied, educating others about HIV.
On disability for a back problem, Gresham is once again close to her daughter and 16-year-old granddaughter. "God put HIV in my blood not to kill me but to turn me around," Gresham says. "It's like I found my happy self again."
James Bender was a Navy sailor. One night in Florida in the 1980s he met two female prostitutes, one of whom left him with a lifelong reminder of their encounter. Believing AIDS was a disease for gay white men, he hadn't worn a condom. A weeks-long fever in 1987 led to an AIDS diagnosis.
"AIDS made me quit taking life for granted. It forced me to make the best use of my time." — James Bender, 51
Now a longtime AIDS survivor, Bender, 51, has endured his share of struggles. The harsh early drugs that saved his life also contributed to a heart attack, osteoporosis, and neuropathy, a nerve-deadening condition of the hands and feet.
Since he began HAART, Bender has come down with the age-linked maladies diabetes, glaucoma, and an enlarged heart. That's because even when HIV is controlled with drugs, it still accelerates the body's aging process. The average 55-year-old with HIV has three chronic conditions — the same number as a 75-year-old who is HIV-negative. Within three years of infection, certain cells vital to the immune system age by as much as 20 to 30 years, a recent UCLA study found. Three U.S. research groups are collaborating to devise guidelines for treating older HIV/AIDS patients.
Bender wonders whether health systems will be able to care for aging people with the disease. He's not alone. Stephen Karpiak of ACRIA sees the coming wave of older AIDS patients as a potential catastrophe. "It's a tsunami that will flood our budgets and worsen the caregiving crisis that's starting to make itself known," he says. "We really need to get a handle on this."
Baltimore-based writer Michael Anft is senior writer for science and medicine at Johns Hopkins Magazine.
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