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Quality of Life
By J Daniel Stricker, Editor-in-Chief
The Winter 2000/2001 ACRIA Update is devoted to quality of life issues in HIV research and care. While antiretroviral therapy has made a great difference in longevity for thousands of people in the United States, most people living with HIV must make major compromises in order to participate in recent medical advances. Many use challenging side effect management techniques in order to stay on treatment. Others continue to have seriously impaired and deteriorating immune systems even as they religiously adhere to their regimens. Still others, like our Board member, Gary Bonasorte, face diminished quality of life as a result of an impaired immune system, and tragically die much too young.
In light of these realities, we took a look at how researchers examine the effects of life-threatening disease and medical treatment on quality of life. Bruce Rapkin, Ph.D. discusses the methods researchers use to measure quality of life and the challenges of creating and understanding such measurements given the highly subjective nature of the issue. Michael Shernoff, MSW describes some common quality of life concerns faced by people with HIV. We thought it particularly valuable to include personal perspectives; four incredibly courageous men and women describe the impact of HIV and current treatment on their daily lives.
We hope that you find this to be an interesting issue of ACRIA Update. For us, it serves as a reminder that our work to improve treatment options for people living with HIV remains of critical importance.
Gary Bonasorte - 1955- 2000
It is with great sadness that ACRIA announces the death of our Board member, Gary Bonasorte, from lymphoma on November 9th, 2000. He was just 45 years of age.
Gary was truly an exceptional human being and a constant champion of ACRIA's mission. In 1991, he was one of the volunteers who helped to establish the agency. Few demonstrated as unwavering a commitment to ACRIA and to the care we were providing to people who desperately needed access to clinical trials. Gary then became a paid staff member in charge of several important functions including volunteer recruitment, community treatment forums and office management. In 1999, Gary decided to devote his full efforts to playwriting and was recently successful in staging several productions. But he did not abandon ACRIA in the process. He agreed to join our Board, and was actively involved in agency affairs up until his disease became unmanageable.
For all of us at ACRIA, Gary was exemplary because he exhibited traits that are essential to the considerate care of people who live every day with life-threatening illness. He was always available to anyone in need, consistently compassionate, and a terrific listener. Our ability to help patients and clients has benefited immeasurably from his example.
CRIA extends its deepest condolences to his partner, Terrence McNally, and to his family in Pittsburgh.
