July 23, 2012

The "Positive Lounge" at the 2012 International AIDS Conference

Tom Waddell, MD, Olympic decathlete, SF physician, AIDS patient, and activist for better medical care for people with AIDS, 1987.

Kaiser Permanente, not a newcomer to the 30-year struggle to alleviate the suffering of AIDS patients, is the sponsor of The Lounge for People Living with HIV/AIDS at the XIX International AIDS Conference in Washington, DC. The "Positive Lounge," a quiet corner of rest and support, provides refuge from the hurly burly of the momentous event.

This week 25,000 clinicians, researchers, activists and journalists from the world over convene for a week chock-full of lectures and symposia on the epidemiology of the disease, research for a cure, and progress on halting the rate of infection. Not a few of the delegates and attendees live with HIV/AIDS, and we anticipate 12,000 or more visits to the "Positive Lounge.”

One observer has described the biennial congress, first held in 1985, as a “cacophonous, confusing, crowded, interesting and exhausting” event for all involved, especially for those attending who are living with HIV. Each conference has a way of "calling up feelings of despair, surprise and solidarity.” Midst all of this the Lounge offers intervals of rest for those who need it.

According to UNAIDS, the United Nations agency that tracks HIV/AIDS, of the 34 million people worldwide who live with HIV, 8 million partake in the growing armament of anti-retroviral therapies, and one million of these live in the United States. The medications taken in a combination of three or more, the “drug cocktail,” may induce fever, nausea, and fatigue. Daily regimens require strict adherence and involve the downing of several pills with or without meals and/or other medications. The drugs can rob one of appetite even while diets high in protein and carbs are needed to combat weight loss and fatigue.

The case could be made that the Lounge, as part of the Conference, mimics the range of treatments for AIDS itself. There is an intensity to a conference, a rapid paced relentless sea of schedules and presentations. The Lounge, on the other hand, offers an opportunity to reflect, to absorb, and to recalibrate. Good medical care requires an understanding of pacing, of tempo, and of balance. Too many drugs too fast can cause harm — and everybody responds a little differently, as does one’s own body over time.

During the early years of the epidemic there was so little known about the disease and of treatment options that mistakes were made. But with analysis, reflection, and the direct participation of patients and caregivers, solutions were found. Kaiser Permanente researchers contributed to the body of knowledge needed to improve HIV/AIDS care.

When two nurses at a non-KP facility were so fearful that they refused to enter a patient’s room, Kaiser Permanente reacted. San Francisco Medical Center Infection Control nurse Barbara Lamberto remembers: “We called a department head meeting immediately [and] we talked about our personnel policies and our posture about that kind of situation, and I think in the long run it made a difference because everybody knew [that] this is how we felt. We are a health care organization. We are here to care for patients.”

The epidemic is far from over and more solutions remain to be found. Kaiser Permanente is proud to help be part of that process.