PI Perspective #17

December 1995     View PDF     En español

HIV Infection and “Managed Care”

Important Questions to Consider when Choosing an HMO

• Are there HIV specialists on staff?
• Will I have access to experimental, off-label, and expensive medications and treatments?
• Is there a grievance procedure that will promptly address my concerns?
• How much home care am I entitled to?
• Are there social workers that can assist me with the bureaucracy?
• Are there standards of care for HIV/AIDS in place?

Despite the failure of the Clinton administration’s health care reform initiative, the managed care movement is creating sweeping changes in the way health care is delivered. “Managed care” is not a new concept (California’s Kaiser Permanente Health Management Organization [HMO] has been around for 50 years), but millions of Americans who have never considered managed care an option are suddenly being presented with HMOs or Preferred Provider Organizations (PPOs) as their only choice.

Whether you are working and receive health care coverage from your employer or are covered by the Medicare or Medicaid programs, you may have to deal with managed care in the near future. Most employees are already covered by managed care plans. Many Medicaid recipients are being transferred from independent providers (private practices) to managed care and Congress is looking at doing the same with Medicare patients.

By definition, managed care is a method by which a patient’s care is “managed” to control costs and/or improve continuity of care. However, depending on whom you talk to, you will hear very different visions of reality. Proponents of managed care describe it as a health care system that manages an individual’s, family’s, or community’s overall health, rather than simply treating illness or accidents as they arise. Such definitions make managed care sound like a holistic health care model that places as great an emphasis on prevention and good health education as it does on treating illness. Presumably, the cost of prevention and education will be offset by reducing money spent on expensive problems and hospitalization. Your personal physician serves as a “gatekeeper” to the extended health care system, overseeing your needs and referring you when necessary to medical specialists, dentists, psychologists, and even nutritionists or chemical dependency programs. Such a system, implemented with quality care, can be more efficient and cost effective than the “fee-for-service” model in which patients see a physician when a problem occurs and insurance pays for it.

Managed care’s critics see profit-seeking as the ruling principle in many managed care systems. The traditional American fee-for-service health care model can be wasteful and inefficient. Nothing prevents a doctor from ordering expensive, unnecessary procedures or from prescribing costly medications when generics will do. Instead, malpractice suits encourage doctors to protect themselves by doing everything, rather than just what’s needed. Also, some doctors profit from their referrals and excessive use of tests. Managed care was designed to eliminate these abuses and save money. Virginia Betts, President of the American Nurses Association points out, “When managed care is used entirely as a cost-cutting measure instead of a system to provide efficiently organized, quality care for a continuum of patient needs, patient care suffers. Too many hospitals are using capitated payment under managed care as a reason to cut back on patient safety and quality of care.”

“Capitated payment” (from “per capita” or “per head”) is central to managed care. When you join an HMO, you or your employer agree to pay a monthly fee determined by the size of the group and the makeup of the HMO. If the care provided costs less than the capitated rate, the HMO makes money. If the care costs more, it loses: the less care provided, the more money made. Profit minded executives control your care rather than you, your doctor or hospital. Jane Orient, MD, and Director of the Association of American Physicians and Surgeons, describes managed care as a corporate dream in which patients become commodities and physicians must choose between the patients’ and the company’ interests.

Most Americans belong to HMOs or PPOs. An HMO can contract with independent medical groups (Independent Provider Associations [IPAs]) which provide care to HMO patients for a capitated fee, or they can employ their own staff who are exclusive to that HMO. “Point of Service” HMO plans have the benefit of letting patients seek care from non-HMO physicians, but these plans have larger premiums. A PPO is a network of independent physicians affiliated with the plan. If your physician is a member of a plan, the plan pays most or all of the costs; if not, you pay a much larger portion of the bill. The physicians get plenty of patients but are paid less for each visit and procedure.

Carol Siporen, an Oakland, CA woman living with AIDS recently wrote in the WORLD newsletter about her experiences with Kaiser. Carol found Kaiser adequate for normal family care: “Kaiser was cheap, one-stop shopping. The prescriptions and doctor visits through my work plan were only a dollar.” When she learned of her HIV status the picture changed. Her doctor would not be an HIV specialist and she would have to wait two months to get blood tests. Many of Kaiser’s specialists (gynecologists, etc.) had no HIV experience; some were even reluctant to treat her. Services such as psychological consultations and home care had spending caps and, after a set amount of service, she had to stop. Carol fought back. She insisted on seeing HIV sensitive doctors, and managed to find a sympathetic social worker to help her. Her tenacity got her the care she expected, but used time and energy that she could have spent in other aspects of her life. Kaiser finally recognized her hard earned expertise by appointing her to their Patient Advocacy Committee and Standards of Care Committee. Carol’s experience is typical of many people with chronic or life-threatening illnesses. If you have the energy to fight for what you need and supportive friends, family, social workers, and physicians, you can squeeze quality out of an HMO, but not easily. If you can’t or won’t fight, you may have to settle for what you get. Managed care plans look good on paper, but many of the real issues are not addressed in the advertising.

People we interviewed stressed that their prime concern for a plan was the physicians list. Some had built a relationship with a physician and chose a plan because the doctor was a member. Many physicians belong to several plans, but it is possible to lose a personal physician if the physician leaves your plan. People choosing an HMO should research the doctors and managed care plans in their area. Physicians with HIV experience will be more comfortable with their patients (and vice versa). HMOs without HIV-experienced doctors should be pressured to add them and/or allow enrollees to seek care outside of the group at no extra cost.

Most of the important information is hidden behind the plan’s advertising so be aware that many plans require providers to sign an agreement not to speak badly of the plan. Many providers will be candid, but you will likely receive varying degrees of information. In addition, administrators may not be aware of all the providers and specialists who are signed up with their plan. Your research time is always well spent.

The managed care revolution is changing the face of health care in America. Particularly in urban areas, physician group practices are consolidating and joining managed care, hospitals are downsizing and closing, and patients are working harder and waiting longer to get quality health care. Because new types of health care institutions are rapidly replacing old ones, there are currently few consumer protection regulations. However, H.R. 2400 (the “Family Health Care Fairness Act of 1995”) was brought to Congress on September 27, 1995 by Reps. Charles Norwood (R-GA) and Bill Brewster (D-OK.) It is supported by the Coalition for Health Care Choice and Accountability and many other advocacy groups. At first review, this bill looks supportable. Its bipartisan introduction will be important as it goes through the Congressional process.

The current anti-regulatory atmosphere in American politics will likely mean consumer protection in managed care faces a long, difficult battle. Meanwhile, people living with HIV/AIDS and other life-threatening illnesses will need to fight to ensure quality health care is accessible. Large HMOs should have patient advocacy groups, which can be started by people who share an HMO and similar concerns (don’t expect the HMO to do it for you). Even as an individual, you can affect the quality of your managed care. Do careful research before choosing a plan, know how the grievance procedure works, ask questions and question decisions that do not seem right to you. Stay current on your treatment options by utilizing Project Inform and other treatment information services. Don’t be afraid to advocate for yourself. Remember that your doctor can be a partner in this process; if he or she refuses consider changing physicians. If you are uncomfortable advocating in a medical setting ask a friend or family member to go to doctor visits with you. Be aware of any agency that regulates your plan, and inform them of your problems or concerns.

When real concern for quality of care governs the policies of a managed care plan, managed care can work well for people living with HIV/AIDS or other chronic conditions. When profits are the bottom line and policy is set by administrators and not doctors, patients will have to struggle for quality care. Informed and empowered patients will be essential partners in the delivery of health care services.

If you are interested in ensuring increased patient protection and access to care in the managed care environment, please contact the Project Inform Policy Department at 415-558-8669 and/or the Coalition for Health Care Choice and Accountability at 202-347-4350.

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