Bill Nissley is growing older. At 57, he still leads an active life – traveling, teaching tennis to budding young players, conversing in five languages with whomever he can find. But Nissley is growing older, and that in itself is astounding.
The Santa Monica resident has coexisted with human immunodeficiency virus since testing positive in 1987, which led to him contracting acquired immune deficiency syndrome in 1998. Still, the fact that he has lived a quarter-century since becoming HIV-positive is a testament to a regimen of medicines and, no doubt, his own positive outlook.
“I’m still living and thriving, and looking forward to the next day,” Nissley said recently. “I don’t walk around town wondering what my T-cells are, what my viral load is.”
There are increasing numbers of Bill Nissleys living out their lives in more-or-less routine fashion. Some estimates predict that by 2015, half of all HIV-infected persons in the U.S. will have lived at least a half-century.
Data released by the federal Centers for Disease Control and Prevention in 2008 showed that almost 186,000 men and women age 55 and up were living with HIV. And the latest CDC statistics, released in 2006, found that at least 10 percent of new HIV infections nationwide, and 20.5 percent of new AIDS diagnoses, were among men age 50 or older. In 1982, only 7.5 percent of new AIDS diagnoses were 50 years old or older.
Most of the focus on preventing and treating HIV and AIDS remains on the young, age 13 to 40, who still comprise two-thirds of the population who become infected each year, according to the CDC. Teenagers and twenty-somethings particularly tend to have more carefree attitudes, have seen fewer HIV patients get sick and die, and have internalized fewer warnings about dangerous sexual practices, doctors say.
But as more and more HIV and AIDS patients live into their 50s, 60s and beyond, that cohort is grappling with not only the usual angst that accompanies middle age and elder years but emotional and medical worries about aging faster than their non-infected friends.
“The lack of energy that I have is always astonishing to me,” said John, a 49-year-old West Hollywood resident who was diagnosed with HIV in 1993 and AIDS a decade ago.
John, who along with Nissley attends group counseling sessions for older men at AIDS Project Los Angeles (APLA) and who did not want to reveal his last name, said attending even sedate gatherings with friends who are HIV-negative can be tiring. “I’ll have to leave early or cut it short. And it’s sorta depressing,” he added.
Before the mid-1990s, when new medicines began stunting the progressive deterioration of patients’ immune systems, HIV and AIDS were often considered death sentences, with life expectancy topping no more than two or three years. For tens of thousands, that proved true.
“When I tested positive (for HIV,) people were dropping like flies, Nissley said.
But an evolving course of treatments has led to improved lives and longer life expectancies for tens of thousands of other HIV sufferers.
“Three decades after the first cases were reported in the United States, HIV infection is no longer inevitably fatal,” a June report from the CDC noted.
According to the California Department of Public Health, 40 percent of persons living with HIV and AIDS in the state in 2009 were at least 50 years old. No similar age data from previous years was available, a spokesman said.
In New Jersey in 1992, there were almost 1,050 HIV patients age 50 and above, according to a 2009 paper in the Journal of American Geriatrics Society. By 2004, that number had risen to more than 8,600.
The paper also cited a study showing that nationwide, the rate at which African Americans over 50 were diagnosed with HIV in 2005 was 12 times higher than among whites of similar age, and the rate for Hispanics over 50 was five times higher than among whites. Those ratios were considerably higher than for younger African Americans, Hispanics and whites, the study found.
But while many HIV and AIDS patients have survived much longer than anyone expected two to three decades ago, their longer lives have led to other complications. One of those is premature aging, manifested by both changing physical appearance, the onset of other illnesses not traditionally associated with AIDS, and patients’ internalized feelings that they seem much old than they are.
Of the 3,000-plus patients at San Francisco General Hospital’s HIV-AIDS clinic, the average age is 46 and will soon be 50, said Dr. Brad Hare, the clinic’s director and an associate professor of medicine at the University of California, San Francisco.
“In my own clinic, in the last month, I’ve had three men in their 50s get diagnosed with severe cardiac disease and are waiting for bypass surgery,” said Hare, noting that those conditions are more apt in persons in their 60s, 70s, and 80s.
The phenomenon is a frequent topic at APLA counseling sessions for older men, who felt other groups were focused on the concerns of younger HIV patients. Richard Levin, a psychotherapist at APLA who started and co-hosts the sessions, said participants often discuss whether a particular ailment or ache is the result of HIV and AIDS, or just the normal aging process.
“They keep asking each other and themselves and the doctors and me and anyone who will listen — ‘If I have a physical problem, is it HIV or is it my age?’ No one can answer the question, because I don’t think there is one,” Levin said.
Sherrie Dunn, a registered nurse with APLA who conducts home health visits with HIV and AIDS patients, said she occasionally hears older clients ruefully compare themselves to HIV-negative neighbors of similar age who seem to have more vigor.
“My guy is stricken with, you know, ‘I’ve got fatigue. I have joint aches and pains. Why is it that I can’t do the same things that this guy over here?’ Well, it’s because your body has aged a little bit more rapidly than this other guy,” Dunn said.
Researchers may be zeroing in on a biochemical signpost for what those older men are experiencing: telomeres, a region of chromosomes that normally shortens over time. Anthony Mills, a Los Angeles doctor who has treated HIV and AIDS patients since 1985, said scientists are discovering that AIDS patients tend to have shorter telomeres than they should, given their actual age.
“You’ve got guys who are 50 who maybe look 60, and maybe have some of the neurocognitive issues that people have when they are 65, or certainly the bone density loss of someone when they’re 70,” said Mills, who recently returned from an international AIDS conference in Rome where aging issues was a prime topic. “There’s a lot of interest and focus right now in figuring out exactly, biologically and biochemically, what’s going on that’s causing this accelerated aging process.”
Older patients who are stable but whose immune systems operate less than optimally face higher odds of contracting osteoporosis, or cardiovascular, kidney or liver problems, said Dr. Peter Ruane, a Los Angeles internist who treats HIV and AIDS patients. Those complications may be result from HIV, AIDS, the caustic medicines they took early on or even safer ones that have been developed over the last 15 years, he added.
“A functioning immune system is probably a very important part of staying healthy, and staying healthy despite the fact that you’re aging,” Ruane said. But, “HIV adds 10 years to your chronological age.”
The medical profession hasn’t figured out what to do about premature aging other than to treat the illnesses that crop up. But a three-year study, funded by the University of California’s California HIV/AIDS Research Program, is in part teaming geriatricians with other specialists to work with patients at Hare’s clinic and one at UCSF’s Parnassus medical center.
“To think that you might actually have a geriatrician caring for somebody with HIV 20 years ago would have been kind of unthinkable, and now (it) is really the cutting edge of where HIV medicine is,” Hare said.
A subgroup of over-50 HIV and AIDS patients are those who only recently contracted the virus or developed the disease. Researchers point to increasing sexual activity among seniors, less knowledge about or adherence to safe sex practices among that age group, and a greater reluctance by doctors and other health professionals to encourage seniors to get tested.
A survey of seniors 55 and older in Eastern Riverside County released last month [July] by the Health Assessment Resource Center found that half said they’d been sexually active in the past 12 months while just four percent of those said they had discussed sexually transmitted diseases and safe sex with their doctor. One-third of the seniors between the ages of 55 and 64, and 20 percent of those between 65 and 74, said they’d been tested for HIV, the study found.
Mills said some of his older male HIV patients contend they are “fatigued” with safe sex, particularly when using a condom becomes more difficult as age inevitably lessens their sexual abilities.
“And then there’s also just a sense that, ‘Gosh, I’m 55 years old, I probably have another 10, 15 years of active sex life, maybe. If I get HIV now, there are good medications. It’s not going to make that much difference,’” Mills added. “So there’s a lot of rationalizing that goes behind the older patient who suddenly opts to forego the condoms that he’s used for all these years, and acquiesces to accepting that he’s going to become positive. But I see it happen all the time.”