'People Think It's Over' - Spared Death, Aging People With H.I.V. Struggle to Live
NY Times June 1 2013|
"What he and other doctors have learned is that H.I.V. and aging have a lot in common. Both cause inflammation and a weakening immune system. Both are associated with high levels of depression and isolation, which lead to people skipping their medication - which in turn aggravates all of the other maladies.....Nearly three-quarters of H.I.V.-positive New Yorkers ages 50 and older live alone.....Dr. Antonio E. Urbina, associate medical director of St. Luke's-Roosevelt Hospital's Center for Comprehensive Care's clinic in Chelsea, which sees more than 2,000 H.I.V.-positive patients over age 50 each year. He rattled off a list of common problems: high rates of cancer, heart and lung disease, kidney failure, diabetes, high blood pressure, arthritis and memory loss......H.I.V. hides, it isn't quiet," Dr. Urbina said. "It still can activate cells to spit out bad proteins called cytokines. And these cytokines drive inflammation......aggressive management, understanding that these patients are at higher risk for heart disease, for stroke, for neurocognitive decline. We need to be aggressive, because there are things we can do now that will allow them to age healthily into their 80s and 90s.".......Thomas K. Duane, 58, a former state senator who believes he was infected in the early 1980s. "The city could be more prepared" for the wave of older people with H.I.V., Mr. Duane said......Yolanda Diaz, 50.....works for.... Iris House.....AIDS has given her life meaning and community......older gay men with H.I.V., they feel shut out from AIDS service organizations geared to younger or newly infected men, and from bars where they once felt at home......."The amazing psychosocial programs that developed in the 1980s when there was no medical treatment are an afterthought these days," said Perry N. Halkitis, 50, a professor of psychology and public health at New York University.......Scott Jordan, 52.....Greenwich Village apartment....experiencing severe side effects from his medication....took a brief holiday from the drugs.....side effects eased somewhat......amount of the virus in his blood, which had been undetectable, immediately shot up. Now the old medications will not bring it back down. Until a new drug comes along, he said, he is out of options."
from jules: after managing to get attention for aging & HIV, which took me a good 3-4 years of advocacy for the NIH, researchers & patients to finally realize how important this concern was, now my impression is this issue has lost some steam and attention to the "cure' hopes. Make no mistake trying to find even a functional cure deserves attention & if we could find a functional cure that would be great. But the aging issue is a real life issue for patients which as a group they get older will be quite a handful for individuals as well as the HIV infrastructure which is NOT prepared to provide the care & services of so many aging individuals, which is approaching 50% in many cities of the total with HIV.
Nicole Bengiveno/The New York Times
In his Midtown apartment, Steve Schalchlin, 59, has a piano that he plays every day. He said his music has kept him alive.
By JOHN LELAND
NY times Published: June 1, 2013
Steve Schalchlin would be the first to tell you he lives in a time of miracles, and about how hard that can be. In 1995, as his body wasted away from AIDS, he took the limited time in front of him as a challenge: he would write songs, make amends, fill his remaining days with life. And by the end, with his digestive system shut down, his figure skeletal, he was ready to die. Then he won a lottery for a new AIDS drug that had been rushed through the approval process. Almost overnight his health began to return, and with it, another, more open-ended, challenge: life.
"Suddenly the future seemed like this long, empty road going toward the horizon, and I felt like, what am I gonna do with my life now?" Mr. Schalchlin, 59, said the other day, still marveling at the turn of events. "I had already accomplished all my goals that I had set for myself. And now I had this endless amount of time ahead of me, and I felt depressed."
Mr. Schalchlin no longer worries about dying of AIDS. But he has other health problems, more often seen in people 10 or 20 years older: kidney damage, diabetes, chronic fatigue, thyroid disease, partial paralysis in one eye and general weakness that limits him throughout the day.
He is, he has learned, host to a virus that never stops working, grinding away at him, and requiring sustained, complicated treatment, each medicine bringing its own side effects. At times, he said, it becomes too much. "Sometimes I just get so tired of the fight, it just becomes exhausting," he said. "Do I have to go another day with this, and another day, and another day? I don't think about the future because I'm too busy worrying about the next day and the next hour and the next meal and which pill I'm supposed to take."
Not long ago, it would have seemed unthinkable: H.I.V. is becoming a disease of the middle-aged. Nearly half of New Yorkers with H.I.V. are now 50 or older, ages many never dreamed of reaching. They are the people who were told that they would be dead by 30, who watched their friends or lovers die, who lived to see sufferers on their death beds return to health almost overnight.
They are a diverse group, including people like Emilie Mobley, 70, a die-hard Elvis fan who gets around with a walker after a 2004 stroke, and who was once told to plan her own funeral to spare her family; or like Jan Carl Park, 63, who has had the virus since at least 1981 but has never been sick because of it. Mr. Park, director of the H.I.V. planning council at the city's Department of Health and Mental Hygiene, lost 80 friends to the disease but moved on with his own life, getting a graduate degree and moving up the ladder at his job.
Their stories have largely moved out of the spotlight, as the disease seemed to yield to the miracle of new drugs. To many, AIDS seems like a relic of a past age, as treatable as diabetes.
Yet for people living with the virus that causes it, the experience is more layered and complex.
Now this group of almost 50,000 men and women moving through middle age is a living science experiment, entering medical and psychological territories that are largely uncharted. What are the consequences of long-term exposure to the virus, or to the medications? How do these interact with the effects of normal aging? And how, after you have braced for death, do you turn around and create a new life, often without the friends and loved ones who gave your life definition?
Interviews with a dozen members of this population elicited a mixture of wonder and anxiety. Some said they were healthier and better adjusted than they had been for decades. But for others, survival has come with consequences, both medical and social. Many said they felt forgotten by a city whose attention has turned away from H.I.V. and AIDS, and by a gay community whose activism long ago shifted to same-sex marriage. And for all of them, the journey has been filled with surprises.
"I'm not going to die," said Osvaldo Perdomo, 52, a former Liz Claiborne executive who quit his job after developing AIDS in 2004. Though antiretroviral drugs have reduced to undetectable levels the amount of the virus in his blood, his life remains uprooted, his health sketchy. He spends long hours in bed and struggles with fatigue, depression, anxiety and memory loss. He has not dated since he got sick. And he has $40,000 in credit card debt from co-payments for his medications.
"Sometimes I feel, O.K., I'm not going to worry about what's going to happen 10 years from now," he said. "I'm going to worry about today. But I'm running out of resources. When I went to the drugstore last night to pick up my medication, I was crossing my fingers - if this credit card doesn't go through, I'm going to have to borrow money from a friend. What is going to happen when I'm 65? Are you going to grow up older and alone? Who's going to take care of you?"
Mr. Perdomo recently joined the board of GMHC, the health care and advocacy organization. "People think it's over, you can just take a pill, there's a cure around the corner," he said. "It drives me crazy when people think it's over."
Knowledge of H.I.V. has progressed astronomically since 1980, when the first patient arrived at Bellevue Hospital with what later came to be called acquired immune deficiency syndrome, or AIDS. Paul Bellman, who was a third-year medical student at the time, can still remember trying to help with treatment. In the years since, his practice has gone from helping people die to - after the introduction of effective drugs in 1996 - helping them live.
But as his patients reached middle age, he said, they started to come to him with problems that seemed unrelated to H.I.V.
"We weren't worried that their cholesterol was going up," he said. "The patient was alive and gaining weight. What was developing was a profile of accelerated cardiac risk. I started noticing heart attacks in guys in their 40s and early 50s."
What he and other doctors have learned is that H.I.V. and aging have a lot in common. Both cause inflammation and a weakening immune system. Both are associated with high levels of depression and isolation, which lead to people skipping their medication - which in turn aggravates all of the other maladies.
The cumulative effect is greater than the sum of the parts, said Dr. Antonio E. Urbina, associate medical director of St. Luke's-Roosevelt Hospital's Center for Comprehensive Care's clinic in Chelsea, which sees more than 2,000 H.I.V.-positive patients over age 50 each year. He rattled off a list of common problems: high rates of cancer, heart and lung disease, kidney failure, diabetes, high blood pressure, arthritis and memory loss.
"Wherever H.I.V. hides, it isn't quiet," Dr. Urbina said. "It still can activate cells to spit out bad proteins called cytokines. And these cytokines drive inflammation.
"I think we were so focused in on just controlling the virus that we started to take our eye off primary care issues. We need more aggressive management, understanding that these patients are at higher risk for heart disease, for stroke, for neurocognitive decline. We need to be aggressive, because there are things we can do now that will allow them to age healthily into their 80s and 90s."
Almost two decades after the advent of effective treatment, the virus poses challenges for city agencies as well, said Thomas K. Duane, 58, a former state senator who believes he was infected in the early 1980s. "The city could be more prepared" for the wave of older people with H.I.V., Mr. Duane said, noting statistics that show only one-quarter to one-third of people with H.I.V. maintain treatment to suppress the level of the virus in their bodies. "It's both a disease of poverty and not a disease of poverty," he said. "When there's poverty, it's incredibly difficult for people to access the best care."
AIDS used to present a grimly straightforward narrative. People contracted the disease, wasted to nothing and died. Or: they survived until the 1996 advent of the drug Crixivan and had remarkable recoveries. Flesh returned to withered bodies; cancerous lesions melted away.
But the story was never that simple. Many people never got sick, and others suffered unnecessarily because they lacked information or access to treatment. Poverty, mental health and discrimination have always been factors in AIDS transmission and treatment.
Now add aging to the mix. Living a few miles from each other, in Harlem and the East Bronx, Christopher Davis and Joan Warner have lived radically different lives with the virus. When Mr. Davis, 62, learned he had H.I.V. in the late 1980s and then watched a partner die, he said, "I partied harder. Took every drug in the world. I took all the money out of my 401(k) and spent it." He quit his job, ended up homeless and dependent on the city's H.I.V./AIDS Services Administration.
Ms. Warner, 73, took a different route. She said the doctor told her, " 'Miss Warner, if you want to stay alive' - this was the one sentence he said - 'you have to stop doing those drugs.' That's it. I'd been using and abusing drugs for 34 years. I thought, 'I want to live.' I have my children, I had grandchildren. But I know people who went the other way."
Now both are coping with life with chronic disease. Both say they are healthy, then mention complaints. Mr. Davis, who is now a nonprofit financial executive, had a stroke in 2001, followed by several brain seizures; he lost most of the vision in one eye. "I have the normal problems of growing old," he said. "My knees hurt. My hip is bad, but I still walk two or three miles a day. I think I believe in miracles."
Ms. Warner was 51 when she went to the emergency room with acute diarrhea that was stripping pounds from her body. At four treatment centers, no one suggested an H.I.V. test. "Probably someone that old, they don't look at risk factors," she said. "That can be a pretty delicate situation, trying to engage older people. I guess they didn't think about it." Finally Ms. Warner's daughter, who was then 22, suggested they both be tested. Her results were negative; Ms. Warner's were not.
Her story is common, according to AIDS professionals. Many doctors hesitate to ask people their own parents' age about their sex lives or drug use.
She described herself as "pretty healthy." But she, too, suffers from maladies caused by inflammation, including arthritis that hampers her from walking. Her knuckles look like knotted tree roots. "Last month, the arthritis doctor drained one knee and gave me a cortisone shot in each knee. But I feel it's beyond just the knees. The pain goes down my legs also." Even when she lies down, her legs hurt, she said.
Surprises do not stop. Yolanda Diaz, 50, is experiencing a joy she never expected: menopause. When she first received her AIDS diagnosis in 1989, she had no interest in treatment - instead she smoked more crack and heroin, bounced in and out of prison, and let the father of her children raise them.
But age and the disease have mellowed her. Now she follows her regimen and works for an AIDS organization called Iris House, performing interventions for women with addictions. AIDS has given her life meaning and community. "Man, I'm going to be 51," she said, lingering over the number like a fresh miracle.
"I don't think I'm going to die from H.I.V. and AIDS. But in the long run, I am going to die from O.I.'s, from opportunistic infections. I just don't think about it on a daily basis."
Yet others become more isolated as they age, without support networks, religious ties or even someone to take them to a doctor when they feel ill. This isolation, doctors say, makes the disease more potent.
Nearly three-quarters of H.I.V.-positive New Yorkers ages 50 and older live alone, according to the health department; in a 2006 survey of 914 H.I.V.-positive older New Yorkers by the AIDS Community Research Initiative of America, two-thirds of the respondents were moderately or severely depressed.
Many people with H.I.V. will not go to senior centers for fear of discrimination, said Daniel Tietz, the initiative's executive director. Others say that, as older gay men with H.I.V., they feel shut out from AIDS service organizations geared to younger or newly infected men, and from bars where they once felt at home.
"The amazing psychosocial programs that developed in the 1980s when there was no medical treatment are an afterthought these days," said Perry N. Halkitis, 50, a professor of psychology and public health at New York University, who is H.I.V.-positive. "Now it's completely biomedicalized. In the 1980s, you relied on these other therapies, which are absolutely critical as men get older."
For an upcoming book called "The AIDS Generation," Mr. Halkitis gathered 15 middle-aged, H.I.V.-positive gay men, many of whom had never before been in such company. "This is going to be the only group that lived through the darkest hours of the epidemic," he said. "So there's a particularly nuanced reality for men of my generation. You have a generation of men in need of services who really don't have any place to get them."
And for all of them, the virus is never dormant. Sometimes it makes its presence known, sometimes it works quietly in the background. The story of long-term exposure to H.I.V. and its medications is still spinning out new chapters.
Scott Jordan, 52, recently discovered a new wrinkle: the last treatment available to him is no longer effective.
In his Greenwich Village apartment, Mr. Jordan appeared to be a portrait of health. Married to his high school boyfriend, he is beefy, with a glowing ruddy complexion. But the muscles are from human growth hormone to prevent wasting, and the rosy cheeks are from high blood pressure.
Six months ago, when he was experiencing severe side effects from his medication, he took a brief holiday from the drugs. The side effects eased somewhat, but the amount of the virus in his blood, which had been undetectable, immediately shot up. Now the old medications will not bring it back down. Until a new drug comes along, he said, he is out of options. It was unclear, speaking with him, how confident he was that a new drug would emerge in time.
"I've heard people say, 'we have these drugs now, what are you worried about?' " he said. "And 'you look great.' What it does is it invalidates our internal experience. It's almost as if it's not talked about. I remember a time where it was all we talked about."
Around the apartment were notes to himself: things he wanted to do or say that he was afraid of forgetting, because his memory has declined.
"I'm a young old man," he said. "I start to decline very rapidly in energy around 6 p.m. But I have a wonderful life. And I feel graced by God. I feel great, I guess, just physically older than my healthy contemporaries."