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Consumer's "Bill of Rights" from Clinton Administration

Late in March, 1997 the President announced his appointments to the 32-member Advisory Commission on Consumer Protection and Quality in the Health Care Industry. Members of the commission range from representatives of the American Medical Association (AMA), the American Federation of State, County and Municipal Employees (AFSCME), the Service Employees International Union (SEIU), the American Nurses Association (ANA) to the CEOs of larger, for-profit firms. There is significant representation from health plans. Executive Director Ron Pollack of Families USA, a grassroots health care advocacy group out of Washington DC, was also appointed to the commission.

The group is co-chaired by the secretaries of Labor (Alexis M. Herman) and Health and Human Services (Donna E. Shalala). The commission was charged with creating a "Consumer Bill of Rights" by March 1988.

At the first meeting of the committee on May 13, members heard sharply conflicting opinions on whether more government regulation was needed in health care. Proposing strong legally enforceable rights, Cathy Hurwit of Citizen Action argued, "We don't believe you can have a voluntary Bill of Rights. We don't believe you can rely on the market to enforce those rights. Just as restaurants are not allowed to operate if they are not up to code, you should be setting a code, and all health care plans should have to meet those standards."

While several panelists echoed these sentiments, others argued against regulation. "Wise purchasing decisions by employers, not regulatory micromanagement, will produce the greatest benefits," Helen Draling, manager of health programs for Xerox Corp. testified.

Now the document requested by President Clinton has been finished. According to a press release from the Department of Health and Human Services dated November 20, 1997, there are three goals for this "Bill of Rights": "to strengthen consumer confidence that the health care system is fair and responsive to consumer needs; to affirm the importance of a strong relationship between patients and their health care providers; and to reaffirm the critical role consumers play in safeguarding their own health." The substance of the document consists of the following points, with the explanations of all points taken directly from the HHS press release:

  • The right to information. Consumers have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities, and professionals.

  • The right to choose. Consumers have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care.

  • The right of access to emergency services. Consumers have a right to access emergency health care services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity.

  • The right to be a partner in health care decisions. Consumers have a right to fully participate in all decisions related to their medical care. Consumers who are unable to fully participate in treatment decisions have a right to be represented by parents, guardians, family members or other conservators.

  • The right to care without discrimination. Consumers have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. Consumers must not be discriminated against in provision of health care services based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment.

  • The right to privacy. Consumers have the right to communicate with health care providers in confidence and to have the confidentiality of their individually-identifiable medical information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

  • The right to speedy complaint resolution. All consumers have a right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them including a rigorous system of internal review and an independent system of external review.

  • Taking on new responsibilities. In a health care system that affords consumers rights and protections, consumers must also take greater responsibility for maintaining good health.

The main question of course is - what does it mean? The rights enumerated here have some effect in the federal Medicare and Medicaid programs, where the executive can declare the rules according to which the programs must operate. For private health insurance plans, these "rights" without the force of law are just wishes or talking points, not actual enforceable rights. And that last point, which is no kind of consumer's right at all, simply should not be a part of this list - yet there it is. .

Commission member Philip Nudelman, chairman and president of Kaiser/Group Health, Inc. Said, "I think we've successfully avoided stating what the true rights should be." In a letter to the co-chairs of the commission (HHS Secretary Shalala and Labor Secretary Herman), Nudelman said that the commission should declare "fundamental rights...even if we cannot fully implement them today." He then went onto say that the most important would be the right of access to quality health care regardless of ability to pay. In the event, the commission did not mention this right.

In the Medicare and Medicaid programs, the Clinton administration has determined that "gag clauses" prohibiting doctors from telling their patients about treatments not approved by the insuring agency are against federal law. Medicare and Medicaid beneficiaries are entitled to their doctors' unfettered medical opinions. However, the first listed right for all health care consumers has been carefully worded so as not to spell this out, and in fact the commission does not try to prohibit "gag clauses."

Medicare and Medicaid rules prevent the income of a physician from being at "substantial risk" through financial incentives to the physician to limit the number and type of medical procedures he makes available to his patients. In terms of patient's rights, this would be the right to coverage for any medically necessary or useful procedure. While the commission's list includes a right to some kind of information, a right to "be a partner", and a right to "speedy complaint resolution", somehow the right to actually get quality health care, even if that is what you and your employer have paid for, has been left out.

In short, according to this list, you should have a right to the sizzle, but not to the steak. This Bill of Rights has gone so far down the road of compromise with insurance companies and managed-care plans that the "health care consumers" who are supposed to be reassured will find it to be weak and disappointing.

Commissioner Ronald Pollack of Families USA, a consumer advocacy group, said that, aside from a right to appeal a health care decision to some authority outside the insuring agency, this bill of rights as now written would do little to lower the barriers that private health insurance plans erect between patients and treatment. He added: "What if the [original] Bill of Rights didn't include the freedoms of speech and religion? You'd say something was missing. That's the analogy here."

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Layout revised September 30

Article updated November 23.

Last revised January 31, 1998