National Alliance on Mental Illness
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Where We Stand

National Managed Care Patient Bill of Rights

NAMIís Position (Summarized from the NAMI Policy Platform)

NAMI supports health care for all persons with brain disorders that is affordable, nondiscriminatory, and includes coverage for effective and appropriate treatment. NAMI supports federally mandated, minimum standards for health insurance coverage. NAMI supports efforts of states to gain waivers of ERISA (the federal Employee Retirement Income Security Act) so self-insured employer health plans would comply with state-mandated minimum benefit laws. Managed care organizations must be held accountable for delivering a comprehensive array of community support services, and appeal and grievance procedures must be in place that are user-friendly and time-sensitive.

The Need to Stand and Deliver

A 1997 NAMI study, Stand and Deliver: Action Call to a Failing Industry, reported that managed care plans failed to deliver on the following expectations: publicly available and current practice guidelines, easy hospital admission and flexible hospital lengths-of-stay, PACT programs, immediate access to all effective medications, suicide attempts viewed as medical emergencies, consumer and family participation in treatment planning and care, measurement of clinical outcomes, access to psychiatric rehabilitation, and access to secure and supportive housing.

In an October 1998 NAMI survey of consumer and family experiences with managed care, 25 percent of respondents reported positive experiences with managed care in four areas: improved access to treatment, emphasis on preventing crisis, focus on consumer satisfaction, and decreased unnecessary hospitalization.

The five most negative experiences with managed care reported were: don't know how to file an appeal (55 percent); inability to see a doctor (41 percent); problems getting medications (34 percent); problems getting crisis services (33 percent); and problems getting admitted to a hospital (28 percent). Of the 25 percent of respondents who had filed an appeal with their health plan, families were successful 54 percent of the time and consumers were successful 42 percent of the time.

NAMI's Advocacy Strategies and Goals

NAMI is supportive of many of the provisions in the separate House and Senate managed care Patientsí Bill of Rights proposals.

NAMI supports enactment of mandatory third-party, independent, clinical review with prompt timelines for binding decisions. Such clinical review entities must be composed of specialists who understand and deliver clinical care to persons with severe mental illnesses, and the clinical review must be independent of the health plan, completed promptly, and binding on the health plan. While the appeal of a denial is in progress, the patient must continue to receive necessary services. Access to immediate, necessary, and appropriate care is the highest patient-rights priority of NAMI.

NAMI supports enactment of mandatory access to medications. Health plans must offer access to all effective and medically appropriate medications. If a health plan uses a formulary, exceptions must be allowed when a non-formulary alternative is medically indicated. Health plans must establish procedures for members to appeal a decision to prescribe a medication. Medication appeals must comply with the third-party, independent, clinical review advocated above; and until the appeals process is finalized, the enrollee shall remain on his or her previously prescribed medication. Plans must not require enrolled individuals to switch medications that have been effective for them. (See separate Where We Stand paper on access to medications.)

In addition, NAMI supports many other consumer-protection provisions, such as complete public sharing of health plan procedures, restrictions, and coverage information and the creation of ombudsmen programs to help enrollees understand and take advantage of their rights. Finally, NAMI believes that all health plans, not just managed plans, must comply with a national patient bill of rights. Such compliance must apply to all treating providers within health plans, not just the health-plan administrators.

The Bush Administration and Congressional Action

Enactment of a federal "Patients Bill of Rights" remains one of the most contentious issues facing the 107th Congress and the new Bush Administration. The most divisive issue in this debate is, as it has been over the past several years, the right of consumers to sue their health plans in state courts over decisions to deny coverage for recommended treatment. In addition, major struggles are expected over legal authority to define medical necessity (a key to determining whether treatment and services are covered by a health plan) and over whether to extend protections to all health-plan enrollees or to only those in self-insured plans, which are exempt from state regulation.

However, this year it appears that the two sides are no longer debating whether or not lawsuits will be allowed, and are instead focusing on whether suits will be allowed in state or federal court, whether employers will be subject to suits, and whether there will be limits on monetary damages. While an agreement on these issues is not expected to be easy, both sides have signaled a clear willingness to get legislation passed as early as this spring and put years of partisan bickering to rest.

On February 7, the White House released a set of principles for Patientsí Bill of Rights legislation that included the right of consumers to sue health plans (but not employers) in federal court. More importantly, the White House statement contained a conciliatory tone and willingness to compromise.

The release of the President's principles came one day after the introduction of a new bill developed by Senators John McCain (R-AZ), Edward M. Kennedy (D-MA) and John Edwards (D-NC). This bill (S 283) is considered a major breakthrough, not only because of Senator McCain's involvement, but also because of how far it goes in bridging the gap over health plan liability. Specifically, the bill would allow consumers to take disputes over contractual matters (e.g., do the terms of the health plan violate state law) to federal court and matters over medical judgment to state court (e.g. was a denied treatment in fact medically necessary). S 283 would not set limits on damage awards in state court, but would cap civil assessments for punitive damages at $5 million. Representatives Greg Ganske (R-IA) and John Dingell (D-MI) have already introduced a House version of the McCain-Kennedy-Edwards bill, HR 526.

Over the past few years, advocates of strong patientsí protections have insisted on state court jurisdiction over all cases and no statutory limit on damages. By contrast, opponents (including the business community) have either opposed any right to sue health plans, or at least insisted that suits be limited to federal court. Thus, the compromise contained in S 283/HR 526 - with shared federal and state court jurisdiction and a cap on damages - marks a major breakthrough in resolving the issue of plan liability. It is expected that President Bush will push for a lower cap on damages and a stronger assurance that employers cannot be held liable for the decisions of the health plans they purchase for workers and their families (two of the key concerns included in his principles).

President Bush's principles for Patient Bill of Rights legislation can be viewed


The Bush Administration may also attempt to put forward a proposal to expand access to coverage for the nationís 44 million uninsured citizens as part of a patientsí-bill-of -rights debate. During the election campaign, candidate Bush endorsed a series of measures including expanded tax deductions and tax credits for people who currently lack healthcare coverage, including medical savings accounts (MSAs),and multi-employer purchasing schemes known as association health plans (AHPs). While NAMI strongly supports the goal of expanding access to coverage for the uninsured, NAMI perceives AHPs as a direct threat to state mental illness parity and mental illness coverage laws. The Bush-proposed measures would allow vast numbers of small employers to band together to offer self-insured health plans under ERISA, the federal law that allows employers to self insure and, therefore, exempt their plans from state laws.

In recent years, the number of states that have enacted mental illness parity laws has expanded to 32. In each of these states, the parity laws do not cover individuals and families enrolled in ERISA self-insured policies. While the federal Mental Health Parity Act (MHPA) does apply to ERISA plans, its requirements are far below most of the existing state laws. (Parity is limited to annual and lifetime dollar limits.) Because the expansion of healthcare coverage through AHPs would certainly have a negative effect on state mental-health parity laws, NAMI remains opposed to AHPs being included in any final patient protection bill. It also important to note that, collectively, these proposals to increase coverage for the uninsured are estimated to cost as much as $48 billion over 10 years while they are projected by the congressional Joint Economic Committee to benefit only one percent of those who are now uninsured.

For more information about NAMIís activities on this issue, please call Andrew Sperling at 703/516-7222. All media representatives, please call NAMIís communications staff at 703/516-7963.