The blind leading the blind: doctors at many HMOs are ruining the best chance of HIV-positive individuals have for success.

When A. Cornelius Baker joined Kaiser Permanente's managed care health maintenance plan in Washington, D.C., a year and a half ago, he was set up with a general practitioner who responded to Baker's blood-test readings by dashing off a prescription for AZT. When Baker pointed out that even the front page of The Washington Post was touting the lifesaving benefits of protease inhibitors, the doctor shrugged his shoulders, saying, "Don't believe everything you read."

Wrong response. Baker is the executive director of the National Association of People With AIDS. Baker raised "holy hell," he says, over the doctor's outdated and potentially damaging method of treatment. But for many people, particularly those newly diagnosed as HIV-positive who want to reap the benefits of combination therapy, such questionable care from an HMO may be all too routine.

"It's critical because it's the difference between life and death," Baker says. "Combination therapy works best when it's done well from the beginning. Your first chance is your best chance, and in many cases, it's your last chance."

Research has underscored just how widespread the problem is. John G. Bartlett, MD, of Johns Hopkins University and Paul Volberding, MD, of the University of California, San Francisco, in June reported that one in four people starting treatment of HIV are not treated according to the U.S. Health and Human Services HIV treatment guidelines. Additional studies in the Journal of the American Medical Association and the New England Journal of Medicine show that the life expectancy of patients after they are diagnosed with AIDS depends to a surprising degree on whether their physicians have even a modest amount of experience in treating the disease.

Unfortunately, HIV-positive individuals at HMOs still run the risk of ending up with general practitioners who haven't kept abreast of changes in HIV treatment. "Patients in managed care organizations are routinely assigned to doctors who have precious little information about emerging issues related to HIV," says Jose Zuniga, deputy director of the International Association of Physicians in AIDS Care. "It's pennywise and pound-foolish."

Indeed, general practitioners cost less than specialists. But mismanaging the first course of treatment means that patients end up with the specialists anyway, resorting to alternative combinations that may not perform as well. The result is that the patient's health may needlessly end up in decline--with all the attendant costs to the HMO. The recourse for patients who lose their best chance is limited; although patients can sue HMO doctors under malpractice law, a federal shield law bars most consumers from suing HMOs for bad medical decisions.

Angered by the problem and the perception that HMOs are not moving quickly to correct it, AIDS activists have joined the bandwagon to reform managed care organizations. "The time has come to support a federal law to protect consumers in managed care," says Susan Dooha, director of health care access and an insurance expert at Gay Men's Health Crisis in New York City. Working together with other AIDS organizations, including NAPWA, GMHC has thrown its support behind the Patients' Bill of Rights Act of 1998, a Democratic-sponsored bill pending in Congress.

Dooha insists that alternative legislation sponsored by Republicans won't go far enough to correct the abuses at HMOs. "The HIV community will be called upon to rally support for this legislation this fall, which is facing staunch Republican resistance," she adds. "If we don't push hard and force the president to keep his promise to sign the good bills, the Republicans will push alternate bills that protect big business."

Indeed, Congress is under heavy pressure to pass legislation governing the operation of HMOs. The Democrats would extend protections to 150 million health care consumers while the Republicans would limit the protections to 50 million.

"If there isn't a national outcry from the patient and physician community," Zuniga warns, "we may see a negative outcome that supports a bill that is more pro-business than we'd like."

The situation is so bad that some individuals who can't afford private insurance care often get better treatment when it comes to HIV. Savvy Medicaid patients can get top-quality care without having to clear the bureaucratic hurdles erected by some HMOs. "In Los Angeles," says Cesar Portillo, director of government affairs at that city's AIDS Healthcare Foundation, "if you have publicly funded care, you are guaranteed to have access to some of the finest treatment in the nation."

The problem at HMOs is not confined to HIV-related care. Breast cancer activists say that lesbians who have the disease have their own battles to fight with managed care. "If you are a lesbian at an HMO and you are diagnosed with breast cancer, you are in big trouble because you simply have no control over how knowledgeable your specialist is going to be about lesbian issues," says Barbara Brenner, executive director of Breast Cancer Action, a San Francisco-based advocacy group. "You may already have jumped through the hurdles to educate your primary care physician about lesbian health care issues, and now you have to start from square one."

The only thing to do, activists say, is to fight back. Dooha hopes that continued expression of consumer unhappiness will light a fire under lawmakers to stop HMOs from making medical decisions once reserved for physicians. With help from AIDS health care professionals, she says, perhaps Congress will realize the task it must confront after it returns from summer recess: "getting back to the business of real health care reform."

Sadownick is a Los Angeles-based writer and author of Sacred Lips of the Bronx and Sex Between Men.