San Francisco Chronicle - Monday July 31, 1989
Randy Shilts

The Kaiser Patient Advocacy Union - or KPAU - is raising a serious challenge to the business-as-usual, doctor-knows-best attitude that has permeated the medical establishment for generations. That the group of Kaiser-Permanente customers outdraws virtually any other AIDS group in Northern California speaks to the most important new challenge facing the medical establishment from the AIDS epidemic: consumer activism.

In the not-so-distant good old days of medicine, doctors dictated the course of treatment to patients who passively accepted whatever was recommended. Doctors answered to nobody but God - and possibly their malpractice insurance carrier.

Enter AIDS, which, in cities such as San Francisco, disproportionately struck a community of well-educated young men who were very politically sophisticated. Within the first two years of the epidemic, many local AIDS patients - who tended to know each other because so many lived in one neighborhood - realized that their doctors often were poorly informed about how to treat this disease. After all, having been discovered only in 1981, AIDS wasn't something most physicians could have studied in medical school.

As a consequence, the patients formed their own informational networks to school themselves on the nuances of HIV medicine and keep far abreast of new scientific developments. In recent years, the trend has meant that patients frequently tell their doctors what tests and treatments to prescribe - and if the physicians don't cooperate, the patients shop for doctors who will.

For those dealing with a large medical bureaucracy such as the Kaiser Permanente system, one of the nation's largest providers of health care, the new HIV consumerism gets more complex.

"Some doctors at Kaiser are very good with HIV," says KPAU spokesman Alex Captanian, a San Francisco real estate broker. "Many others know little or nothing about HIV, and Kaiser has refused to substantially change things for the better."

In short, KPAU charges that Kaiser is intentionally providing inadequate AIDS care to make the Kaiser system so unattractive that people at high risk for AIDS will go elsewhere when enrolling in a health plan. Kaiser vociferously denies this, but KPAU says there is no denying that Kaiser patients face incredibly uneven care from physicians who range from excellent to outrageously ill-informed.

By its own count, Kaiser estimates it cares for between 5,000 and 6,000 HIV-infected patients in Northern California. Still, Kaiser's San Francisco hospital has steadfastly refused to centralize services in an outpatient HIV clinic, even though many medical authorities say such facilities provide better and more cost-effective care.

Even more seriously, KPAU members say their Kaiser doctors sometimes refuse to order important immunological tests that can show whether they could benefit from potentially lifesaving treatments. Such refusals would be in defiance of recent government guidelines that say such regular testing should now be considered the standard of care for all HIV-infected patients.

Dr. Philip Madvig, Kaiser's physician-in-chief, acknowledges some past problems but insists that many of the complaints are being resolved by intensive doctor education, case-management systems and a recent reorganization of HIV services under the hospital's new long-term AIDS plan.

"We've made a lot of progress in broadening the willingness of doctors to get involved and gain the knowledge of HIV" in the past year, Madvig said. "We don't believe in moving to centralized services because we're building a broad base of physicians who have expertise in this disease."

No matter who's right or wrong, complaints are widespread enough that similar Kaiser patient groups have been organized in Oakland, Sacramento, Los Angeles and Bakersfield.

On a fundamental level, such activism represents a challenge to the way medicine always has been practiced in America. The issues these patients are organizing around are matters that traditionally have been the complete domain of doctor discretion, such as what medicines and diagnostic tests patients should have.

Similar disputes have faced just about every doctor serving AIDS patients in major urban areas. Physicians worry that some patients are ignoring sound medical advice to take unnecessary tests and ineffective treatments. In some cases, however, patients simply are better educated about AIDS than their doctors and are acting accordingly.

Doctors long have pleaded with patients to take a more active role in their health care, but many now admit to some discomfort at the HIV consumerism.

"We need patients to participate in health care, but it's leaving us with dual feelings," says Madvig. "This is a change, and change is always hard to accommodate."

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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