Since its inception, The Elizabeth Taylor AIDS Foundation (ETAF) has given over $14 million in grants to organizations in more than 40 states and 31 countries including the AIDS Community Research Initiative of America (ACRIA), which is doing unique work assisting the elderly living with HIV. In October, ETAF’s Managing Director Joel Goldman and Elizabeth Taylor’s grandsons Quinn and Rhys Tivey visited ACRIA to meet with people over the age of 50 for a roundtable discussion on “aging with HIV.”
As ACRIA gets ready to host its 18th Annual Holiday Dinner, Executive Director Daniel Tietz introduces you to the organizations’s work, illustrated by photographer Quinn Tivey’s portraits of just a few of the millions of Americans living with HIV in their golden years.
A decade ago, who would have thought that we would be discussing the needs of people with HIV as they reach old age? It is a testament to the work ACRIA and The Elizabeth Taylor AIDS Foundation have been doing since the early days of the crisis that we are now at this point. Together, we are making sure that all adults over age 50 have the information and resources they need to stay healthy and live long, full lives.
It wasn’t all that long ago, in 1981, when young, healthy gay men in Los Angeles, New York City and San Francisco began seeking treatment for illnesses normally seen in much older, very sick people. The emergency room doctors treating these young men knew it was something serious but were confused and afraid of what they were seeing.
The AIDS epidemic had begun.
What happened next is well-known. People with HIV began dying and there was almost no public support for treating and preventing the disease. People with HIV were largely shunned and there was very little hope that things would get better. It was a dark and difficult time but something had to be done.
Frustrated with the lack of attention and resources for HIV, a group of physicians, researchers, activists, and people with HIV came together to form ACRIA during the peak of epidemic in 1991. Determined to stop their friends and loved ones from dying, ACRIA’s founders fought and lobbied for research dollars and education programs to help stop the spread of the disease. Due in part to ACRIA’s work, nearly 20 medications have obtained FDA approval and made it possible for millions of HIV-positive people to live longer, healthier lives. Indeed, by 2015, half of all people with HIV in the U.S. will be over the age of 50 due largely to effective treatment. While this is a remarkable achievement, there are also new challenges that health and services providers must address as we enter this new age of the epidemic.
“I’m dealing with HIV, depression, kidney cancer and high blood pressure,” says ACRIA client, Douglas. “I am 52 years old, and my parents are in their 70s, but when we talk it’s like I’m in my 70s with them.” As ACRIA’s Medical Director, Jerome Ernst, MD, notes, “Older adults with HIV often find themselves dealing with numerous issues, such as cancer, diabetes and depression. In fact, on average, HIV-positive people over 50 have on average at least three health conditions in addition to HIV, which is akin to what we see in adults 20 years older without HIV.”
Another client, Anna, had doctors who never expressed any concern about her risk for sexually transmitted infections. Since she was a widow, they assumed she was not sexually active—an all too common assumption made by doctors and others about older people in general. “When I turned 59, I began to suffer from fatigue. I asked to be tested for HIV and I was told I was positive. I was offered counseling and was not allowed to leave until I assured them that I had support at home.” Although she had thought about HIV, she had never been offered a test and doctors never discussed risky behaviors with her. Anna’s story reveals how uncomfortable many doctors, and people in general, are with older adults who are sexually active or who may use substances. But as people live longer, HIV testing will need to be a routine part of medical care, and the CDC recommends “routine” testing up to age 65.
Thanks to the generous support of The Elizabeth Taylor AIDS Foundation, ACRIA is improving the health and lives of older people with and at risk for HIV across the country through innovative education and research programs. ACRIA works with clinicians and health and human services providers in areas of the country hardest-hit by HIV, providing them with the information and training they need to better serve their older clients. ACRIA also conducts innovative research on aging and HIV that regularly brings global attention to this important issue. In addition, ACRIA investigates new medications that will ensure that people with HIV obtain ever-improving treatment options.
More on the 18th Annual ACRIA Holiday Dinner: On December 11 in New York City, ACRIA will recognize and honor ETAF friend and supporter Martha Nelson for her longstanding and dedicated leadership in the fight against HIV/AIDS. It was Martha who first introduced ETAF to ACRIA and its work while serving as President of the ACRIA Board of Directors. In addition to her philanthropic work, Martha served as Editor-in-Chief of Time Inc., Editorial Director of the company’s Style & Entertainment and Lifestyle Groups, Editor of PEOPLE magazine, and the Founding Editor of InStyle. She also spoke at Elizabeth Taylor’s memorial service in 2011 on behalf of the media community.