National Alliance on Mental Illness
page printed from
(800) 950-NAMI;

Patient Bill Of Rights Update: Consensus Legislation Introduced, President Bush Announces Principles, Partisan Stalemate May Finally End

For Immediate Release, February 22, 2001
Contact: Chris Marshall

After nearly five years of political impasse, it appears that the stalemate that has blocked legislation establishing a managed care "Patient Bill of Rights" may finally be over. In the past two weeks, the Bush Administration and congressional leaders from both parties have signaled a willingness to reach an accord on one of the most contentious health care issues of recent years. While the final result is far from certain, it now appears likely that in the next few months legislation establishing minimum federal standards for all health plans will become law.

As has been the case since 1996, health plan liability and the ability of consumers to sue their health plans remains the most controversial provision to be worked out. 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.

President Bush Enunciates Principles

On February 7, the White House released a set of principles for Patient 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 patient 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).

A summary of McCain-Kennedy-Edwards bill can be found at:

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

Key Concerns of Children and Adults With Serious Brain Disorders Addressed in Patient Bill of Rights

Beyond the issue of liability, key congressional leaders and the Bush Administration are believed to be very close on the specific protections that will be included in any federal Patient Bill of Rights. The most important of these protections for people with severe mental illnesses relate to access to treatment. For example, both congressional leaders and President Bush have made clear that a Patient Bill of Rights must include a provision guaranteeing access to non-formulary medications. Unrestricted access to appropriate medications remains NAMI's top priority in this debate. Specifically, NAMI supports a minimum standard for all health plans allowing access to the newest and most effective medications, including atypical antipsychotic agents and selective serotonin reuptake inhibitors (SSRIs). More information on NAMI's position on access to medications is available by viewing the following publication:

Other key NAMI concerns that are included in S 283/HR 526 and addressed in the President's principles are: independent and speedy third-party review of plan denials, required coverage of routine treatment associated with clinical trials, restrictions on any financial incentives for doctors to deny treatment, unfettered access to specialists, "continuity of care" for consumers switching health plans, and access to emergency care (requiring plans to cover emergency room visits that a "prudent layperson" would view as requiring immediate medical attention).

Association Health Plan (AHP) Proposal Remains a Concern

It is expected that the Bush Administration may also attempt to put forward a proposal to expand access to coverage for the 44 million uninsured as part of the Patients' Bill of Rights debate. Last year, candidate Bush endorsed a series of measures including expanded tax deductions and tax credits for people who currently lack coverage, 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, the organization opposes AHPs as a direct threat to state mental illness parity and mental illness coverage laws. These 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 exempt their plans from state law.

In recent years, the number of states that have enacted mental illness parity laws has expanded to 32. In each of these states, state 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 of the potential impact that expansion of coverage through AHPs would certainly have on state parity laws, NAMI is opposed to their being included in any final patient-protection bill. It is 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. At the same time, the congressional Joint Economic Committee has projected that these provisions would benefit only one percent of those who are now uninsured.