KS Addressed At Community Forum


KS Addressed At Community Forum

Being Alive; August 1996
Greg Blakeney

On July 20, over 100 people living with KS, their significant others and healthcare workers gathered for the first ever community forum of its type. "Living with KS: Information and Support for Those Impacted by Kaposi's Sarcoma" included speakers discussing causes, treatments, and new therapies for KS, as well as emotional and physical appearance issues. The seminar was sponsored by Being Alive and AIDS Project Los Angeles, and was made possible by the generous financial backing of Sequus Pharmaceuticals, Inc. and Nexstar Pharmaceuticals, Inc.

The forum began with Dr. Steven Miles of UCLA discussing causes of KS. He presented evidence that suggests that a herpes-like virus (HHV8 or KSHV) plays a role in initiating KS. He also suggested that current treatment strategies could be changed. Instead of treating a patient's first few lesions locally, and then waiting until KS progresses to begin systemic therapy, he suggests starting off with aggressive treatment, then going to other treatments for maintenance. Dr. Miles also said that because people are living longer with HIV, the incidence of KS is not decreasing.

Dr. Miles was followed by Dr. Parkash Gill of USC. Dr. Gill discussed the current state of treatments for KS. He also presented data on one of the new systemic chemotherapies using liposomal encapsulation, DaunoXome. The data presented imply that these liposomal treatments can be as effective as standard chemotherapy with less side effects.

Dr. James Thommes of Pacific Oaks Medical Group continued the discussion of therapies presenting data on the other approved liposomal therapy, Doxil. He also presented exciting information from studies using Taxol as a systemic therapy for those with advanced KS. After the lunch break, therapist Suzanne Rosenblatt discussed some of the ways KS affects people emotionally. She brought up difficulties many have in being open about their KS and how easy it can be to isolate. A forum participant added "people can be closeted about AIDS, but KS outs you." Therapist Romy Guntman continued the psychological discussion talking about sexuality and dating for those with KS. She gave examples of four individuals with KS, and the different ways each chooses to live his dating and social life.

The forum ended with Helen Vega doing a demonstration on how to use makeup to cover lesions, and Terri Rink giving ideas on how to handle hair loss due to medical treatments.

Overall, people were thrilled that this issue is finally being addressed in a community setting. They also mentioned that such a forum should be presented again with updates every six months to a year. For those who were unable to attend "Living with KS", Being Alive will have videotapes available at the Silverlake office.


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