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Contact Us Fall 2000; Volume 1, Number 1
Health Highlights

Protecting Patients: The Debate over a Patients' Bill of Rights
David Sclar
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You need not follow health care policy on a regular basis to be aware of the Patients' Bill of Rights debate taking place on Capitol Hill. The debate over a Patients' Bill of Rights is receiving national attention, and both parties are speaking to the need for laws that will protect patients. Support for such legislation was featured prominently in a number of speeches at the Democratic convention, including those of former senator Bill Bradley and Vice President Al Gore. Meanwhile, Governor Bush is openly taking credit for enacting a Patients' Bill of Rights in Texas three years ago. His campaign website boasts that Texas' reforms "led the nation in patient and provider protections."1

Yet, despite the vocal support both presidential candidates are giving to patient protections, proposals for a Patients' Bill of Rights have languished in Congress for over two years. It has proven difficult for legislators to agree on what provisions constitute a desirable and effective Patients' Bill of Rights. To date, Congress has yet to agree on a course of action.

The debate over a Patients' Bill of Rights has dramatic implications for the millions of Americans enrolled in managed care plans. The shortcomings of managed care plans have been well publicized, and instances of HMOs mistreating patients have made headlines: Last fall's November 8, 1999 Newsweek dubbed the suffering of managed care enrollees "HMO Hell." Some common anecdotes tell of patients in need of emergency care who may be told to go to a far away hospital because their HMO does not contract with the nearest hospital.2 Others tell of patients who are withheld care because it is not considered "medically necessary."3

These types of restrictions on patients have compelled Congress to construct varying versions of a Patients' Bill of Rights. Legislators appear to be moving toward a shared desire to pass a Patients' Bill of Rights (as well as to take credit for it); however, the proposed bills differ widely. In particular, the Norwood-Dingell Bill, which passed the House of Representatives in October of 1999, and the Patients' Bill of Rights Plus Act, which passed the Senate in July of 1999, are quite different in form. The question is perhaps not whether a Patients' Bill of Rights should be passed, but rather what contents should an effective Patients' Bill of Rights contain? What measures are necessary to protect HMO enrollees around the country? On the other hand, could some measures, while well-intentioned, be overly restrictive or cause problematic unintended consequences? Some of the most significant provisions that have been put forth in proposed legislation include:

  • An internal and an independent external review process. Patients would appeal to these reviews when they are denied care they believe they need. Legislation would require such a review to be prompt because a patient's health may depend on the speed with which a decision is made on his appeal.
  • Access to emergency care. Patients would have the right to receive emergency care that a "prudent layperson" would deem appropriate in any hospital emergency room, not just those hospitals dictated by one's HMO.
  • Access to specialists. Patients with diseases such as cancer that require care beyond that of a general practitioner would have the right to see a doctor who specializes in treating their affliction. Women would also have the right to designate an OB/GYN as their primary care physician.
  • Access to confidentiality info. Patients would have the right to know their HMOs confidentiality policy with regard to their health records.
  • Continuity of care. Because the doctor-patient relationship is essential to quality health care, patients who are in the middle of a course of treatment when their doctor leaves their health plan would continue to be covered by the plan.
  • Access to non-formulary drugs. Patients would have a right to the medication their doctor prescribes. If a doctor believes a patient needs a particular drug or if a patient has an allergy to the drugs covered by a plan's formulary, he would have a right to a non-formulary drug, and he wouldn't pay more for the medication..
  • A guaranteed point-of-service (POS) option. Patients, like any other form of consumer, need a choice - of health plans and of doctors. Giving them the option of joining a POS would aim to preserve this choice. A POS option would be especially important for HMOs with enrollees from small businesses, which may only offer one plan.
  • Patients' right to sue. Patients would have the right to hold their health plans accountable when they are harmed by a plan's decision not to approve care. Currently, the 1974 Employee Retirement Income Security Act (ERISA) only allows patients to recover "the cost of the benefit denied." However, when HMOs refuse to approve care and patients suffer and sometimes even die as a result of those decisions, patients arguably deserve more than simply the "cost of the benefit denied." Patients would have the right to hold plans accountable for their negligence.
  • Prohibition of "gag clauses." Doctors would have the right to discuss any and all treatment options with their patients, not just those treatments covered by the patients' health plan. "Gag clauses" that prevent doctors from fully informing patients about their plan's coverage would be eliminated.
  • Scope. A Patients' Bill of Rights would apply to varying numbers of Americans. In its most comprehensive form it would apply to all privately insured Americans. The larger the scope of the bill, the more patients it would protect.
Among these many provisions, some are more controversial than others. While some patient protections may make common sense, others are more complicated. Critics believe that certain aspects of proposed legislation could have unwanted consequences that ultimately do patients a disservice.

Critics argue that a Patients' Bill of Rights, though well-intentioned, would raise the costs of health care as well as premiums, causing employers to drop coverage and uninsurance to rise. With health care spending already around 15 percent of GDP, pressure to resist further cost increases is great. Furthermore, those who followed the plight of Harvard Pilgrim, which was forced into state receivership in January of this year, might reasonably be worried about HMOs running into financial troubles. Some worry that new regulations forcing changes in the way HMOs do business could contribute to existing financial problems.

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