What you and your HIV specialist don't know can hurt you

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:

• Patients receiving care and treatment from the most experienced physicians survived an average of 26 months after diagnosis of HIV disease.

• Patients being seen by the least experienced physicians average survival was 14 months.

• The risk of death was decreased for each successive patient a doctor treated.

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:

• Direct clinical management of people with HIV as part of an on-going residency program, fellowship, private practice or clinical or hospital-based practice, during the past two years and/or,

• Hands-on experience over the past two years in an HIV-specific mini-residency program provided by a teaching institution or sponsored by an AIDS Designated Center (New York) or through an AIDS Education and Training Center (AETC)

• In addition to the above, HIV specialists will be expected to provide evidence of participation in on-going (at least annual) HIV-specific continuing medical education that is consistent with the guidelines for specialty care.

Expectations of an HIV specialist

Sophistication in medical management of HIV/AIDS requires familiarity with several aspects of medical care:

• State-of-the-art diagnostic techniques.

• Immune system monitoring.

• Quantitative viral measures. Recent developments indicate that ongoing measurement of viral load assist in the prediction of clinical course and guide therapeutic interventions; access to this test and ability to interpret results and intervene appropriately will be a critical part of HIV care.

• Management of retroviral disease. New scientific advances suggest that early intervention remains a key strategy in preventing advancement of disease. Ability to diagnose HIV infection early in the course of infection and intervene appropriately will continue to be a basic hallmark of care.

• Management of opportunistic infections and diseases. Basic familiarity with the clinical presentation of opportunistic diseases and a strong grasp on the therapeutic strategies to conquer them is an essential part of HIV care. New pathogens are recognized as the cause of HIV-mediated infections that are treated with specific drugs that the physician must be familiar with.

• Early recognition of organ system manifestations of disease. Clinical experience with management of HIV disease is the only determinant of skill in HIV diagnostics.

• Latest information about HIV disease and treatments. Advances in antiretroviral therapy continue to make HIV a dynamic field. Data regarding new drugs and their combinations continue to emerge and change standards of practice. Familiarity with these new drugs, their side effects and interactions with other drugs is a feature of basic HIV 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 has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).