59-year-old Myron Gold, at a day treatment center run by Village Care of New York, was diagnosed HIV positive in 1993.
By John Arbucci
When he was 36 years old, Phillip Howell found out he was HIV positive. “I was devastated,” he says. “I thought it was a death sentence.”
That was 16 years ago. These days, Howell is part of a growing population: people over the age of 50 who are infected with HIV. In New York City, 26,000 people – 28 percent of all those infected – are over 50. Like Howell, most of them have been infected for a long time, but thanks to combination drug therapies they have accomplished what once seemed impossible – they are growing older.
Which has in turn created a new set of problems. Older people with HIV have to cope not only with the virus but also with the diseases and conditions that often accompany aging. What makes the situation even worse, say caregivers, is that many of the older HIV patients feel isolated, alone, and stigmatized for having contracted a disease that is transmitted primarily through unprotected sex and intravenous drug use.
An HIV-positive diagnosis was not Phillip Howell’s only problem back in 1989. “I was drinking,” he says. “And I was drugging.” He was also homeless. Things got even worse in 1992, when his T-cell count dipped below 200, which meant that his diagnosis changed from HIV-positive to AIDS. His living situation improved in 1993 when he found the apartment where he still lives today, but a couple of years later the chronic nature of his illness forced him to give up his job in food catering. Like many people with HIV who are too sick to work, Phillip Howell has been receiving public assistance ever since.
When the drug cocktails for HIV first became generally available in 1996, Howell’s doctor put him on a regime. It controlled his HIV, but the complications included intense nausea and vomiting. Such side effects also hit people under 50, but members of the older crowd are more apt to have other difficulties that also require medication. And when pa-tients start combining medications, they run the increased risk that one or more of the drugs will interact – sometimes dangerously – with whatever drugs they’re taking to control their HIV.
Howell, for example, suffers from serious heartburn. At one point, he took an over-the-counter medication to treat the heartburn, but he didn’t realize that the heartburn medication would interfere with – and make less effective – a protease inhibitor he was taking to help block HIV’s ability to reproduce itself.
Donna Gallagher, the director of the New England Aids Education & Training Center in Brookline, Mass., where healthcare professionals are taught how to treat and manage patients with HIV, says there is a serious lack of information about older patients with HIV. “We don’t know a lot about how AIDS medications cross with many of the medications that older people take,” she says. Some of the latter medications treat diabetes, high blood pressure, and high cholesterol. “The reality is that we’re just figuring out what it’s like for anybody to be alive 25 years later with this disease.”
But Stephen J. Karpiak, associate director of research at the New York-based Aids Community Research Initiative of America, says it’s important to remember that while these concerns are serious, they’re part of a fundamental success story. “It tells us that the pharmacological treatment of this disease works. There is a larger and larger group of people living every day with HIV and AIDS.”
Nick Cannone is a nurse practitioner at Village Care of New York, a not-for-profit agency that provides treatment and care for people living with HIV and AIDS. “As we get older, we need to do healthcare maintenance,” he stresses, referring to such procedures as colonoscopies, mammograms and prostate exams. “These are things that HIV patients are going to have to do, which they didn’t have to do before, because they weren’t living long enough.”
There are also some things these newly longer-living HIV patients may have to stop doing. “If a client used to smoke, you didn’t make a big deal out of it,” Cannone says. “It gave pleasure, and it wasn’t worse than the disease.”
Jan Zimmerman, the director of one of Village Care’s day treatment centers, said another important question many of her clients face is how you live your life when you know you have another good 10 to 20 years.
Phillip Howell took advantage of this opportunity. He has been sober, he says, for five years. And even though many of his friends have died, he does not feel alone. He has “a lot of friends and acquaintances that I grew up with. We’re very close; I can talk to them about anything.”
In this, Howell is more fortunate than many of his contemporaries. Yvonne, a 51-year-old who wears her hair pulled tightly back with a maroon butterfly clip and asks that she not be identified here through the use of her last name, is more typical of the HIV-positive community. She is African-American, on public assistance, and has several health concerns that worry her as much as – if not more than – her HIV status. Yvonne is diabetic, and infected with hepatitis C.
According to the Centers for Disease Control, approximately 25 percent of all Americans who are infected with HIV are co-infected with hepatitis C – another virus that is transmitted primarily through intravenous drug use. Some 70 percent of those infected with hepatitis C will develop chronic liver disease.
Yvonne reports that recent blood tests showed her liver function to be good, and her HIV viral load (the amount of virus in her blood) to be at an acceptable level. What really concerns her is her diabetes, which she struggles with daily by sticking herself with a pin twice a day to monitor her blood-sugar levels. “If I was able to pick between diabetes and AIDS,” Yvonne says, “I would pick the AIDS.”
Yvonne discovered she was HIV-positive in 1991. She decided to be tested “because all my friends were dropping like flies.” Her daughter and brother now know about her HIV status, but she kept the truth from them for a long time. “Not telling them was a drag.” After she finally told them, “I got so much lighter.”
Too many HIV-positive people over 50 still carry the burden of keeping their status a secret. They feel this burden on a daily basis: when they need a ride to the doctor’s office and can’t explain why they have to see the doctor so often; when they have to hide the reason why they’re taking so many pills, and when they just feel plain lousy and can’t tell anyone why. All for fear that their loved ones will no longer love them. Jan Zimmerman of Village Care often hears stories from clients who are outcasts. “Whether it’s because they’re HIV positive, or they’re gay, or they’re IV drug users, they’re the pariahs of the family.”
And then there are those who create their own exiles. Keith, a 68- year-old HIV-positive man from the West Indies goes to a center every day. Slender and fit-looking in an impeccable brown suit, plaid tie, and monogrammed shirt, Keith wears gold rings on his right hand, a gold chain around his wrist, and gold-rimmed eyeglasses. He is a retired maintenance worker who used to be employed by New York City, and who found out he was HIV positive in 2001, when he was 64 years old.
“I was losing weight,” says Keith (his middle name), “and I had some white things on my tongue.” He was also experiencing night sweats, waking up to sheets soaked in perspiration. Eventually he went to a hospital, where it was determined that he was HIV positive. His doctor put him on anti-viral medication and referred him to a day treatment center in Manhattan – rather than Keith’s home borough of Brooklyn – to minimize the risk that somebody from his neighborhood would discover his HIV status.
“I don’t socialize no more,” Keith says.
He used to dance. He no longer dances. He avoids his old friends. Besides his doctor and the people at the care center, the only person he has told about his HIV status is one of his sons. “If I make it be known that I’m HIV positive, I’m branded. Held up to disgrace,” Keith says. “The perception out there is that if you have HIV you’re homosexual. I’ve never been with a man in my life. On the other hand, I cannot point to who I got HIV from. Because of my flirting lifestyle.”
Until he discovered he had HIV, Keith did not know that he needed to protect himself against it. “I was ig-norant about it. I thought you could look at someone’s appearance and tell if they had HIV.”
This lack of awareness, experts say, is common among people over 50, and several factors increase the difficulty of educating them that they are at risk. For starters, HIV is most prevalent in poor neighborhoods, where people often don’t have access to adequate health care. HIV is also still perceived as a gay disease. Or as a disease of youth, an image reinforced by – among other things – ads for HIV medications, which are populated by smiling and healthy looking young men and women.
Then there are problems that originate with medical professionals. Donna Gallagher of the New England Aids Education & Training Center says that healthcare providers “don’t like to think of people either their mothers’ or their grandmothers’ age having sex.” And that’s not just healthcare providers. “It goes back to social norms [which suggest that] older people – and particularly older women – aren’t supposed to be having sex. Older women aren’t supposed to be shooting heroin or trading sex for drugs, either. And we know from our patient population that they’re doing all three.”
While most people over the age of 50 who are living with HIV contracted the disease during their 30s and 40s, new infections are in fact occurring. But “we shouldn’t be seeing any,” Gallagher says. “This disease is 100 percent preventable.”
It’s preventable, but only, she emphasizes, if people understand how HIV is transmitted and how to protect themselves and their partners. “We have to reach the people who are old and HIV-positive and still sexually active. Some of them think they’re too old to transmit the virus.”
Which is exactly wrong. As women get older, the linings of their vagina and anus become thinner and more likely to tear, which makes it easier for them to contract HIV. Jessica Frickey, a spokesperson for the Centers for Disease Control in Atlanta, says: “Prevention efforts, regardless of age, have to focus on changing behaviors.” But it won’t be easy because many older people feel “uncomfortable talking about sex and using condoms.”
In the current political climate the prevalent message about sex – young and old alike – is abstinence. But as Donna Gallagher observes, “People in their 50s and 60s have a completely closed ear to abstinence because they think they’re adults and can make their own decisions.”
The message they need to hear instead is that if they’re going to have sex, they should practice safe sex. This means keeping their partners’ bodily fluids (semen, vaginal fluids, and blood) out of their mouths, vaginas, and anuses by use of condoms and other latex or plastic barriers. And the actors and models in those public-service, anti-AIDS advertisements have to look like the audience they’re intended to reach: people over 50 who might also be substance abusers; the poor; and members of minority groups.
Regardless of when or how those now over the age of 50 contracted HIV, the challenge for healthcare professionals is to keep them as healthy as possible. One method that seems to work well is the day treatment center. There, doctors and nurse practitioners provide medication, mental-health professionals provide counseling, and balanced meals (usually lunch) are served to people who don’t normally eat well. And clients of various ages learn the lessons that all people with HIV need to learn: how to take their medications, how not to transmit the virus to others, how to cope with depression and other diseases.
Day treatment centers are also places where patients know they can go and not be judged. Because everyone else there is HIV positive, just the way you are. That’s especially important for older patients – particularly those who feel cut off from family and friends. Keith from the West Indies is a client at Village Care of New York. “If it wasn’t for this center,” he says. “I don’t know what would happen to me. This place turned my life around.”
