Aging With HIV/AIDS (with Sound)
Thirty-five percent of New Yorkers living with HIV/AIDS are over 50.
On World AIDS Day, 67-year-old Ed Shaw was traveling to The Bronx to speak on HIV awareness, counseling a young friend to get tested, and preparing for a speech at Columbia University. His schedule would be demanding for any man his age, but Shaw has had HIV for the last 20 years.
“Let me say this, sometimes individuals that are 10, 15, 20 years younger than me can’t keep up…they are saying to me: Ed, how do you get all this energy?” said Shaw.
Wearing a black suit, a Barack Obama hat, AIDS and Obama buttons on his jacket, Shaw can light up a room with his bright smile. He spends most days at his GMHC (Gay Men’s Health Crisis) office in Midtown. There he works in a small, very messy cubicle.
As the chairman of the board of New York Association on HIV over Fifty (NYAHOF), he has a busy schedule. While taking a break on Dec.1, he is answering phone calls from HIV activists, responding to email requests to speak, and listening to the news. “I’m always multi-tasking,” he said.
His jovial nature now is much different than when he first tested positive in August 1988. “Without any knowledge of what it was I thought it was a death sentence. That’s all I knew. If you got HIV, you died soon after.”
AUDIO: Shaw on HIV/AIDS as a death sentence
With HIV patients like Shaw living longer, they are of concern to local and national health agencies.
The New York City Department of Health and Mental Hygiene (DOHMH) reported this summer that in 2006 there were 4,762 new HIV infections in New York. About 714 of those cases were people over 50 years old.
The DOHMH also reported in 2004 that the average age of persons living with HIV/AIDS was 44. The average age of death was 48.
In 2007, of the estimated 102,404 people living with HIV/AIDS in New York, 35,813 (35%) were over 50. That is an 8% increase from 2004, when 26,797 HIV patients over 50 lived in New York.
Nationally, the CDC reported in 2005 that individuals over 50 account for 15% of new HIV/AIDS diagnoses. They account for 19% of all AIDS diagnoses, 29% of all persons living with AIDS, and 35% of all AIDS deaths.
Shaw moved to New York City from Mount Vernon, NY in 1959. “I was going with this young lady. She became pregnant and we moved into the city. My daughter was born Sept.10, 1960. The rest is history,” Shaw said.
He found work getting jobs for other people at Manpower, a precursor to the current NY job finding service, Workforce New York. He was really good at his job and received many promotions and accolades. He was known for his hard work.
Shaw believes he contracted HIV during the mid-eighties.
AUDIO: Shaw on contracting HIV
“It was either through intravenous drug use or having sex. I had many young ladies on my arm at the time…I thought I was god’s gift,” he said.
HIV transmission through injection drug use accounts for more than 16% of AIDS cases among persons over 50 years old, according to the CDC in 2005.
After first learning he had HIV, he figured he would go out in a “blaze of glory.” He refers to these years as his time living like a nomad wandering through the wilderness.
Not taking any medication, and drinking and doing drugs heavily, sent him to the hospital off and on for years. “One week I’d be in the hospital for three or four days, then two weeks later I would be back. My immune system was starting to be compromised more.”
Change finally came when he had a mild heart attack in 1993.
While spending a month at Cabrini Medical Center in Manhattan after the attack, he began asking doctor’s questions. “It had a lot to do with my desire to live.”
“Doctors said, you gotta stop drinking, gotta stop drugging. The drugs and the alcohol were eating up my liver…So, I cut that out.”
Shaw hasn’t drank or done drugs in almost 18 years. He still enjoys the occasional Newport cigarette.
Dr. Mark Brennan, a psychologist and senior research scientist at AIDS Community Research Initiative of America (ACRIA), advises older HIV patients to quit smoking. ACRIA found that smoking was very prevalent with older HIV patients. “Smoking exacerbates so many health problems,” he said.
After getting out of Cabrini, Shaw attended a support group at St. Cecilia’s Church. There the support encouraged him to learn even more about his illness. “That was the building blocks…I would become more and more knowledgeable.”
“It was like a burst of energy… [I said] what am I going to do with all this information?”
The skills that made him a successful job recruiter were then applied to helping the HIV community. He would listen to what people had to say and then offer advice. He’d tell them where they had to go for housing, medication, and forms they needed to fill out to get assistance.
“It was just part of what I did. And I’m still doing it today,” said Shaw.
His current group, NYAHOF, has around 45-60 members show up to monthly meetings. They discuss topics like nutrition and mental health.
Reaching out to the older HIV community can be difficult. Eric Navoa, 22, is a project coordinator for APICHA (Asian & Pacific Islander Coalition on HIV/AIDS) and gets frustrated by older crowds. “As a peer councilor, it is much easier to talk to people my age. Older crowds have a set mentality of what they think they know.”
Beatrice J. Krauss, a professor of urban public health at Hunter College, said older New Yorkers “tended to think of HIV as not [their] problem” in the ’80s and ’90s.
Krauss thinks reaching out to older HIV community is just a matter of putting in the legwork: “as long as people sit in their offices it may appear certain groups are hard to reach. I have never had a problem reaching any group if I got up out of my chair, went out the door, and started talking to people where they live and work.”
Dr. Brennan, of ACRIA, advises older HIV patients to stay involved. Brennan, 49, has found many patients suffer from depression, so he recommends joining many of the community support groups in the city.
Shaw is now just trying to enjoy the most out of life. His passion is chess, and he meets friends at Duke’s Restaurant several nights a week. They play for two-three hours. “Most evenings you’ll catch me at Duke’s.”
He looks forward to the twilight of his life.
AUDIO: Shaw on living with HIV