Support a Strong Patient Bill of Rights

How can we protect the rights of people who receive their health care through managed care organizations (MCOs)? This became an issue for public policy advocates in 1997 when a key health care committee (The Advisory Committee on Consumer Protection and Quality in the Health Care Industry) issued their report, the "Consumer Bill of Rights and Responsibilities." The high degree of consensus within the committee surprised many observers and led to the Patient Bill of Rights (PBR) bill, introduced in 1998 into the 105th Congress.

Support for the PBR has grown over the 105th and 106th Congresses. It passed the House of Representatives last year when more than 30 Republicans abandoned their leadership, but it fell one vote short in the Senate. Republican leaders in both houses resisted its passage by offering a much weaker version (also called the Patient Bill of Rights), and by adding amendments, such as medical savings accounts, that were unpalatable to the Democrats.

Prospect for passing a strong bill this session look bright. Supporters count majorities in both houses -- based on the November 2000 election.

But it is not clear that President Bush would sign a strong PBR. He did sign a relatively strong bill in Texas, which included the right of patients to sue MCOs (when they were injured by the wrongful denial of care). Though there have been very few lawsuits under the Texas law, the potential for a lawsuit is a strong incentive to reach appropriate settlements during the appeals process. Key legislators are negotiating, and it seems likely that a strong version of the PBR will move in the 107th Congress.

Key Elements

Bipartisan agreement has coalesced on the most important points, but some conflicts exist over the right of patients to sue MCOs, and the right to sue employers (in those rare cases when employers deny medically necessary care). Key elements include:

• Patients should have the right to timely internal and external appeals when they feel they are being denied access to medically necessary care. The external appeal must be heard by an independent and unbiased appeal organization. If the appeal organization decides to grant care but the care is still denied, then the patient can turn to the courts for help. The court must be able to invoke fines for denying care, and must be able to allow for compensation when the denial of care leads to injury or death.
• There must be a strong definition of "medical necessity" in the legislation, rather than merely referring to whatever MCOs choose to say about medical necessity in the contracts signed with patients. The definition should include the importance of maintaining the current level of health functions and not just be defined as "improvement."
• Patients should have access to emergency care in any situation which a "prudent layperson" would define as an emergency. Severe pain should be considered an adequate reason for seeking emergency care.
• An MCO should provide access to appropriate medial specialists even when that MCO has not employed such a specialist.
• Patients who are severely ill, or who have chronic conditions, should have their primary doctor as their gatekeeper.
• Patients should have direct access to obstetric and gynecological services.
• Children should have access to pediatric specialists, and pediatricians should be allowed to serve as gatekeepers to appropriate benefits.
• An MCO should pay the routine patient costs for patients who participate in clinical trials.
• A patient should be allowed to receive any drug prescribed by their physician.
• An MCO must make information available to patients about the health plan's policies, procedures, benefits and requirements.
• Patients have the right to know about all relevant treatment options.
• An MCO must not discriminate against, or retaliate against, any doctor who is acting in the best interests of a patient. Furthermore, MCOs should not provide financial bonuses or other inducements to doctors who deny care to patients.
• The right to appeal and the conditional right to sue for damages are not enough to improve the quality of health care offered by MCOs. Bipartisan support has developed for a voluntary quality enhancement program called QISMC, to be administered by the Health Care Financing Administration (HCFA). While quality enhancement programs may help, they provide no excuse to avoid obeying the law. HCFA and other federal agencies, as well as state insurance commissions and other state agencies, have regulatory responsibilities and must step up to them. Unfortunately, advocates have found evidence of lax enforcement of existing protections. Adding the PBR to the list of laws will have little impact unless sufficient funds are provided to enforce the laws, and the public strongly encourages the authorities to monitor compliance.

Action Needed

Advocates are urged to write or call their Members of Congress, as well as President Bush, to urge the early passage of a strong Patient Bill of Rights which includes a strong internal and external appeals process and the right to sue when an MCO, or in rare cases an employer, denies medically necessary care for a disease or injury condition covered by the MCO contract. Furthermore, the Health Care Financing Administration must be given the resources and encouragement to enforce the law.

General Assembly Guidelines

The 211th General Assembly (1999) approved the "Monitoring Report on the Presbyterian Church (USA)'s Health Care Policies and Activities and the Current Sociopolitical Context for Health Care with Recommendations." The recommendations are for congregations, middle governing bodies and General Assembly entities. The report directs the Washington Office to continue public policy advocacy for the development of a rational, just health care system that is available to the entire population residing in the United States (See Minutes, 1991, Part I, Resolution on "Christian Responsibility and a National Medical Plan," p. 817). Until such a plan is adopted for the United States, the Washington Office is directed to advocate on behalf of the uninsured, underinsured and other vulnerable populations.

The report also recommends that all governing bodies and all entities related to the General Assembly reaffirm the need for a health care system that provides physical and mental health care which is adequate, affordable and accountable. Public and private sectors and voluntary organizations individually and corporately should work to that end.

Stewardship of Public Life - Health Care
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This article was written by Patrick Conover of the United Church of Christ. Series editor: Rich Houston. Issue date: April 2001. For information about regular or email subscriptions or reprint permission, please contact Rich Houston.