HMOS NOT SET UP FOR AIDS\Managed care units geared for healthy.

Byline: Elisabeth Rosenthal The New York Times

When Michael Donaldson joined a health maintenance organization in April, he was HIV-positive and healthy. But as his health declined, he said, the Health Insurance Plan of New York came to seem less his ally than his enemy.

When he told his HMO doctor in June that he had pneumonia - with a high fever, nausea and severe shortness of breath - he was sent home on antibiotics, he said. Two days later he was in intensive care in an emergency room.

When he developed a skin rash, which he said he knew was Kaposi's sarcoma, his doctor, who had limited experience with AIDS, was unsure. So he was referred to a dermatologist, who then referred him to an cancer specialist - each time, he said, with weeks of delay, so that lesions spread over his body. And he said the oncologist turned out to have little experience in treating the cancer, a leading cause of death in men with AIDS.

Donaldson now pays out of pocket to go to the Kaposi's clinic at Bellevue Medical Center. His plan's executives defend the reliance on generalists to treat AIDS, and say he could have changed doctors if he was dissatisfied. But the network is nonetheless revamping its treatment for people who have AIDS.

For the first time, large numbers of people with HIV and other chronic diseases are in managed care networks, in part because more companies are placing their employees in HMOs and in part because government insurance programs are moving swiftly to place Medicaid patients in such networks.

But HMOs evolved to meet the needs of healthy people, and few have a track record with AIDS and other serious chronic conditions.

Even officials who favor forcing Medicaid patients into managed care are wondering whether they will need to create networks tailored for people with HIV.

Last month, Gov. George Pataki announced $2 million in grants for health care companies to develop such plans, in the hope that they could be offered to Medicaid patients by next year.

"We don't have a lot of experience taking care of HIV-infected patients within HMOs," said the state health commissioner, Dr. Barbara DeBuono. "These HMOs are all over the lot in their care."

In fact, the federal Department of Health and Human Services insisted last fall that AIDS patients be exempt from a New York City plan to place Medicaid patients in HMOs, specifically because it felt that their AIDS services were inadequate.

AIDS patients in managed care networks complain of many problems - from an inability to find doctors knowledgeable about the disease, to inadequate coverage for drugs, to long waits for appointments, which may be merely inconvenient for a healthy person but dangerous to a person battling a progressive disease.

"Our clients who've been in managed care have had horrendous experiences," said Charles King, president of Housing Works, a group that helps people who have AIDS. "The networks aren't equipped to deal with people who have HIV."

Health care providers differ on whether people with AIDS and other chronic illnesses can be treated effectively in managed care plans.

Plan executives contend that their emphasis on prevention and coordinated care, including such services as counseling and nutritional advice, makes them in many ways ideal for the chronically ill.

"In fact, we would argue that HIV and AIDS can be best managed in HMOs," said Stephen Matthews, senior vice president of Managed Healthcare Systems, a for-profit HMO for Medicaid recipients.

But many health care researchers say the financing procedures and incentives of conventional managed care plans can never accommodate AIDS care.

Such HMOs often receive less than $2,000 a year to take care of a healthy young man. But at least one of the half-dozen experimental networks for people with AIDS requires about $50,000 a year to treat a patient with advanced disease.

Susan Dooha, a senior policy analyst at Gay Men's Health Crisis, the country's largest AIDS services group, said: "I don't have any success stories about HMOs, just a lot of complaints, and I think it's a structural problem. The HMOs consistently rely on a gatekeeper to prevent overuse, which may be appropriate for healthy people like me, but is not appropriate for someone who is medically fragile.

"I think we have to modify the plans for people with HIV."