What you and your HIV specialist don't know can hurt you
Survival of the Smartest
In January 1996, researchers from the University of Washington presented the results of a study examining the relationship between physicians' knowledge of HIV treatment and the survival of their patients. The study, conducted over a 10-year period (1984-1994) and involving 400 patients under the care of 125 doctors at an HMO in Seattle, produced these data:
Some of the things more experienced physicians were inclined to do were monitor immune status (this was before viral load testing), prophylaxis for PCP and provide what was considered "aggressive" (pre-protease inhibitor) anti-HIV therapy. Simply put, an AIDS patient's survival is directly linked to how much his or her doctor knows about treating the disease.
What is an HIV specialist?
The clinical care of people with HIV/AIDS requires the participation of doctors with specialized expertise in the practice of HIV medicine.
Scientific and clinical knowledge about the management of HIV infection and disease continues to grow at a rapid pace, resulting in frequent changes in state-of-the-art practice. Advances occur unpredictably and must be integrated into regular care as quickly as they become available to people living with HIV.
What it takes to be a specialist
The single most important factor in gaining experience in HIV clinical management is through direct hands-on experience. The following possibilities are appropriate ways for gaining HIV specialist status:
Expectations of an HIV specialist
Sophistication in medical management of HIV/AIDS requires familiarity with several aspects of medical care:
Nurse practitioners and physician assistants providing clinical care to HIV-infected individuals under an HIV specialist physician may also be considered HIV specialists.
How do you know if your doctor is a specialist?
Chances are that if your health-care provider works out of a private practice or clinic that is dedicated to HIV care, he or she knows "what's hot and what's not" based on extensive hands-on experience. In L.A. County, we are fortunate to have many qualified practitioners in HIV treatment.
What you, as a patient, bring to the table is an important part of your health care. This is especially true if your medical coverage or geographical distance from an HIV specialty practice have left you in the hands of a less experienced provider.
A study of long-term survivors of HIV determined that a trait they had in common was being "good medical consumers" -- staying informed and assertively demanding excellent treatment. Also, they wanted doctors they can trust, expect to be treated as equals and collaborators. Additionally, they will change doctors if not satisfied.
Not every HIV-infected individual has the time or the inclination to read complicated medical abstracts or study clinical trial results. The graphs, charts and terminology can be overwhelming and it's difficult to identify what advances may be important to you. Treatment advocates at AIDS Project Los Angeles are available to help you make sense of all of the new information.
You can talk to a treatment advocate about combination therapy, adherence issues, changing regimens, understanding your lab results, drug side effects and interactions and many other topics related to your HIV treatment. You do not have to be an APLA client to call or to make an appointment.
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.