Activists fear that AIDS patients are not receiving the best possible treatment in managed-care systems because of the industry's emphasis on cost control.
But providers treating AIDS patients under managed care and HMO executives directing AIDS programs say AIDS and HIV patients are well-served by managed care.
The debate shows no sign of letting up.
"A lot of what we're seeing is not encouraging. The jury is still out on particular HMO programs," said Benjamin Schatz, executive director of the San Francisco-based Gay and Lesbian Medical Association, an organization representing 1,800 physicians in the U.S. and 11 other countries.
Schatz said he's concerned because both the healthcare marketplace and AIDS care are changing rapidly. With increasing pressures to cut costs and the market roiling with mergers and buyouts, "an institution that had a very good reputation for patient care a couple of years ago-a hospital or an HMO-may have changed entirely."
The danger, Schatz said, is that the competition and upheaval in the market could force quality of care into a downward spiral.
Activists are particularly concerned that managed-care plans may restrict the use of the costly new protease-inhibitor drugs that are proving effective in fighting HIV, the virus that causes AIDS. The best drug therapies now cost a minimum of about $7,000 a year.
Meanwhile, the number of people with AIDS continues to climb (See chart, p. 124). The U.S. Centers for Disease Control and Prevention in Atlanta said more than 1.1 million people in this country are estimated to be infected with HIV. Nearly 320,000 people in the United States have died of AIDS since 1981, according to the CDC.
The exact number of AIDS patients treated in managed-care plans is unknown, but the American Association of Health Plans says it believes all its HMO members have AIDS patients as enrollees.
HMO executives as well as providers who treat AIDS patients say managed-care systems provide the best care for those who suffer from complex multi-organ diseases.
"Any systematic approach to HIV care holds out the hope to have better outcomes" because it concentrates on the whole patient, said Mark Smith, M.D., executive vice president of the Henry J. Kaiser Family Foundation, an independent healthcare philanthropy that isn't related to Kaiser Permanente. Smith is on the clinical faculty at San Francisco General Hospital Medical Center and treats AIDS patients there.
Besides, since much AIDS care is self-managed, an organization that provides education in self care-such as an HMO-"ought to do better" for AIDS patients than traditional fee-for-service medicine, he said.
Smith said he sympathizes with complaints from HIV and AIDS patients whose employers or insurers change health plans and who find that their personal physicians are not in their new networks. But, he said, "We're in a market in transition and we've got to work within that."
AIDS providers, Smith said, should approach the changing marketplace with the attitude of "what are the issues and how do we get them resolved? Not just stamp our feet and say, `Oh no, no, no."
For example, he said, "I have a patient whose employer changed plans, and the San Francisco General AIDS clinic was not on the list" of the patient's new provider network.
"But when I looked at the list, there were many qualified AIDS doctors on it. Yes, it's too bad that we're in this transition, but that's not to say that plans don't have qualified doctors," Smith said.
Despite his generally positive outlook, Smith warned that "there will be issues in the creation of HMOs for the Medicaid population." Nearly 60% of all people with AIDS depend on Medicaid at some point during their illness, according to the Washington-based AIDS Action Council. Private insurance pays for 26% of AIDS care (See chart, this page).
"We should be concerned that the new networks include within them physicians who are competent in AIDS treatment," he said.
The Kaiser Foundation is funding a group called the National Academy of State Health Policy, to help Medicaid directors nationwide "make a rational, orderly transition into Medicaid managed care," he said.
In California, the success of one effort to capitate publicly supported AIDS patients is expected to grow into a statewide venture.
One year after AIDS Healthcare Foundation of Los Angeles began "Positive Healthcare," executives there are planning to expand the program outside Southern California.
Positive Healthcare began in April 1995 after the foundation signed a two-year,
$26 million contract with California to provide care for 1,000 catastrophically ill AIDS patients from the state's Medicaid program, Medi-Cal. Through its network of hospital-affiliated clinics, the foundation assumes the risk that the payment from Medi-Cal will cover the costs for whatever the patients need.
"All of the things that are being said about rationing care aren't true," said Marie Flores Clarke, director of managed care at AIDS Healthcare Foundation. "HMOs work under stringent quality assurance processes, whereas there is no quality assessment on fee-for-service."
A fee-for-service plan's "only quality assessment is a malpractice suit," she said.
The Positive Healthcare program must adhere to California's Knox-Keene regulations, which impose stringent requirements on HMOs under the monitoring of state regulators, she said.
"We get very few complaints," Clarke said. "When you are in one of these plans, every complaint must be documented and taken care of in 24 hours. They (regulators) come in and look at your financials every quarter. "
Thus far, Positive Healthcare has enrolled more than 300 patients. AIDS Healthcare Foundation is a not-for-profit organization with $13.5 million in annual revenues. The foundation owns and operates five outpatient clinics and two 25-bed residential hospices.
The clinics are located on hospital campuses in Los Angeles County. The affiliated hospitals are Queen of Angels-Hollywood Presbyterian Medical Center, Cedars-Sinai Medical Center and California Hospital Medical Center, all in Los Angeles; Sherman Oaks (Calif.) Hospital and Health Center; and Daniel Freeman Memorial Hospital, Inglewood.
With AIDS costs adding to pressures from third-party payers and the spread of managed care, hospitals' involvement in Positive Healthcare shows they are reaching out for help.
Four years ago the 18 cities with the largest AIDS caseloads were losing more than $400 per day per AIDS patient, according to the National Public Health and Hospital Institute in Washington.
Nearly 12% of all AIDS patients have no insurance, so costly treatment typically comes from hospitals' budgets for uncompensated care (See graphic, p. 122).
AIDS Healthcare Foundation's program has reduced the average length of stay for a hospitalization to six days. By comparison, HCFA calculates a national average of between 11 and 12 days for "HIV with major related condition."
Patients typically have two inpatient stays a year, Clarke said. Researchers estimate the lifetime healthcare costs for a person from the time of HIV infection until death at between $150,000 and $200,000.
Positive Healthcare's successes may lead to a linkage with larger commercial healthcare plans.
"We are going to approach all of the private payers (in California)," Clarke said.
As for the criticism that HMOs do not cover the most cutting-edge drug therapies, it's a question of definition, according to Wayne Dodge, M.D., who directs several AIDS committees at Group Health Association of Puget Sound, a staff-model HMO in Seattle. "If we are dealing with evidence-based medicine as the basis for coverage, you get different care for HIV (at an HMO) than you would at a no-holds-barred research center," he said.
Group Health's pharmacy and therapeutics committee clears for members' use only those FDA-approved AIDS drugs whose outcomes have been proven and for which the data are available for public view, Dodge said.
"If you demand evidence-based, publicly available, peer-reviewed information, then people are getting top-flight quality care here at the cooperative," he said. "In God we trust. All others must submit data."
Dodge concedes that Group Health is "a big ship" and the drug approval process-as well as changes in treatment protocols-take time. The trade-off is a uniform system of care.
The fee-for-service system of simply allowing an AIDS patient to visit a physician of his or her choice doesn't necessarily produce better outcomes than an HMO, Smith said.
That assertion is supported by a recent study by researchers at the University of Washington and Group Health, published in the New England Journal of Medicine. The study found that a doctor's experience in treating AIDS patients is a key to better outcomes, confirming similar studies showing better mortality data at hospitals with more AIDS experience.
AIDS patients under the care of doctors experienced in treating AIDS lived longer, according to the study.
In the study, the physicians with the best outcomes were not necessarily infectious disease specialists; some were primary-care physicians, said Dodge, who was one author of the New England Journal study.
As a result of that study, Group Health is moving from "passive mentoring" of its physicians who treat AIDS patients-in which an HIV expert is available for consultation-to "active monitoring," Dodge said. In the new program, when an enrollee tests positive, both his or her physician and an HIV coordinator-a nurse-are notified. Either the coordinator or an infectious disease expert or Dodge himself then assist the physician in continually monitoring the patient, he said.
Out of Group Health's 500,000 enrollees, 305 have AIDS and an unknown number are infected with the HIV virus. "We don't have a good handle on how many HIV-infected members we're actually following. We've conscientiously avoided keeping those lists in response to community paranoia," Dodge said. But the HMO has decided to change that policy in order to do active monitoring, Dodge said.
Clinical workstations now are available to every Group Health provider, so clinical data and guidelines on HIV "are shot to everyone at the same time," Dodge said.
That kind of program is exactly what activists have been asking for. Group Health is among the "forward-thinking" HMOs, said Thomas Mitchell, program director at the Community Consortium, affiliated with San Francisco General. The consortium is a group of about 300 physicians in the Bay Area that treat AIDS patients through a variety of plans and programs.
"It seems to me right now (most) HMOs don't want to take any position on HIV," he said. "They don't want to be seen as a good provider or a worse provider. Patients with HIV or other chronic illnesses are simply spread out among providers in the plan, and there is no effective referral system to knowledgeable providers."
Mitchell singled out Kaiser Northern California as another "forward-thinking" HMO. Kaiser has been treating AIDS patients according to established standards for some years. Recently, the HMO adopted standards on AIDS care put together by the consortium and drawn from established guidelines of the National Institutes of Health and the CDC.
The consortium's guidelines are "relatively uncontroversial" and are part of a larger effort by the group to "establish a working relationship with insurers and medical groups to be able to document whether they were meeting fairly minimal standards of care," Mitchell said.
Several HMOs informed the consortium that they would face various problems-some logistical and some political-in trying to establish the guidelines. "So we're still deciding how to proceed," Mitchell said.
Many physician groups in Prudential Insurance Co.'s Western region also have set up a referral pattern in which AIDS patients are cared for by doctors with more experience, said Elaine Batchlor, M.D., chief medical officer for Prudential's Western operations.
Batchlor said Prudential cares for AIDS patients "the way we care for others with chronic illnesses."
In order to give AIDS patients the care they need and want, Prudential has recruited providers that the AIDS community has shown preference for, she said.
Since the results of HIV tests are confidential, guidelines for HIV treatment are communicated to all Prudential's primary-care physicians. "Then we do a random sampling of HIV patients that we can identify to monitor adherence to those guidelines," Batchlor said. "We're constantly evaluating the quality of services and seeking to improve it."
AIDS is "not an area where we're taking special efforts to contain costs. When you have a disease with a lot of expensive drugs, you're not going to save money by nickel-and-diming on appropriate medical care," Batchlor said.
When drugs are needed, they are provided and covered "with no hesitation or delays, no prior approval, just a prescription," she said. "We're not restricting medically appropriate care. I can't speak for every health system, but it doesn't happen here."
Joel Weisman, D.O., chief executive officer of Los Angeles-based Care Matrix Group, a managed-services organization, and Pacific Oaks Medical Group in Los Angeles, described the current situation as "fluid but hopeful."
"There's actually been a change in view in a lot of quarters about how HIV can best be cared for," he said. "There's a transition under way" from using gatekeepers to the "specialty carve-in" model.
In that disease-management model, an HMO or insurer will contract with Pacific Oaks, which comprises specialty HIV-AIDS providers, and give the doctors responsibility for patient care.
Nurses from Pacific Oaks work with patients to coordinate care, and physicians are given protocols that have proven effective, Weisman said.
"There's a potential for networks of HIV physicians who seem to be banding together to create a national standard of care. This would help people in all categories of insurance," Weisman said.
Scott Becker, an attorney in the Chicago office of the law firm Ross & Hardies, has been helping networks and payers to arrange, provide or manage the care of catastrophic illness, including AIDS. "At one time (such disease management) was almost all driven by pharmaceutical companies, and payers were not really prepared to do it," he said. "But in this second generation of disease management, HMOs are looking to negotiate with these networks."
For example, Becker said, the action in Orlando, Fla., is provider-driven. "There are a few thousand AIDS patients. If someone else is ahead of you in getting a contract with Humana, you have lost a significant part of the market share," he said.
On the other hand, if providers don't set the proper reimbursement structure, "they get killed," he said.