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 Federal Action Alert: House Set To Take Up Managed Care Patient Bill Of Rights Legislation Next Week

(Action Requested)

For Immediate Release, 30 Sep 99
Contact: Chris Marshall

After months of delay, weeks of partisan wrangling, the House is scheduled to begin debating Managed Care Patient Bill of Rights legislation the week of October 4. The House is expected to debate dozens of issues related to federal regulation of private health insurance plans, including whether or not to allow people to sue their health plan for damages related to inappropriate denial of treatment and how to best expand coverage to the 43 million Americans without health insurance. As was the case with the Senate debate this past July, much of the debate will likely center on the cost of imposing federal standards on health plans.

The House debate is expected to center on bipartisan legislation drafted by Representatives Charlie Norwood (R-GA) and John Dingell (D-MI). The Norwood-Dingell bill (HR 2723) includes the controversial right to sue health plans, as well as extensive consumer protections in the areas of prescription drug formularies, access to medical specialists, binding third-party reviews and continuity of care when individuals switch health plans. President Clinton has endorsed the Norwood-Dingell bill (HR 2723). Amendments are anticipated in each of these areas - nearly all of which will be intended to either strip protections out of the bill or soften requirements on health plans. In addition, several members of Congress are expected to be offering full scale alternative "substitute" proposals - including one authored by Representative John Boehner (R-OH) that is being supported by the health plan industry and groups representing employers.


NAMI is supporting many of the provisions in the Norwood Dingell bill as positive reforms that will help ensure that health plans adhere to standards governing access to the most advanced treatment and make decisions regarding coverage on the basis of clinical appropriateness, rather than economic concerns. NAMI is also opposing an expected amendment that would vastly expand the scope of self-insured employer health plans that are exempt from state mental illness parity and coverage laws.

NAMI advocates are urged to contact their House member and ask him/her to oppose amendments that weaken protections on key severe mental illness access issues such as drug formularies, clinical trials and binding third-party appeals. In addition, NAMI advocates should also encourage their House member to vote against "access" provisions that undermine state laws such as mental illness parity and mental illness coverage requirements. As part of these efforts, personal experiences of consumers and family members are the most effective means of communicating to House members about how health plans are failing to provide access to the newest and most effective treatments for serious brain disorders and why binding federal standards on health plans are needed.

All members of Congress can be reached through the Capital Switchboard (202-224-3121) or through the NAMI website at and click on "Write to Congress."

NAMI urges House members to oppose weakening amendments in the following areas:

1) Access to "Off-Formulary" Medications

HR 2723 requires all health plans to allow doctors and patients to access "off formulary" medications (i.e., drugs not on a plan's closed list) when medically necessary. It is possible that an amendment could be offered to restore a provision from the Senate bill (S 1344) that would allow a health plan to satisfy this requirement simply by establishing rules for access to "off formulary" medications that charge enrollees a substantially higher co-payment when an off-formulary medication is selected. Another provision in HR 2723 that NAMI strongly supports prohibits health plans from denying access to FDA-approved drugs on the basis of the medication being "investigational" or "experimental." An amendment to strip this provision from the bill is also possible. As NAMI members know first-hand, for years HMOs have been blocking access to the newest and most effective medications for schizophrenia and bipolar disorder out of concerns over cost, rather than clinical benefit.

2) Internal and External Grievance Procedures

All of the competing proposals in the House (including Norwood-Dingell and Boehner) require all health plans to establish internal and external appeal processes and require that cases be reviewed by doctors with relevant expertise. Both proposals would require that decisions are legally binding upon the health plan. However, the Boehner substitute also includes a provision allowing the plan to select the independent third-party review panel. NAMI urges all House members to support an external review process that is completely independent of health plans and accessible to enrollees, regardless of the cost of the medical service or treatment that a health plan denies.

3) Access to Specialists

Both Norwood-Dingell and Boehner would require health plans to ensure that patients have access to covered specialty care within the network, or, if necessary, through contractual arrangements with specialists outside the network. Both proposals would also require networks to have specialists of "age-specific" expertise (i.e. pediatric specialists, including child and adolescent psychiatrists). However, the Boehner proposal does not contain a provision, strongly supported by NAMI, for a "standing referral" (allowing unobstructed access to a specialist over a longer period without authorization from a plan) and to permit certain specialists to act as primary care physicians. NAMI strongly urges House members to support meaningful access to specialists, standing referral and allowing specialists to serve as primary care doctors for enrollees with special health care needs such as severe mental illness.

4) Continuity of Care

HR 2723 would require plans who terminate or non-renew providers from their networks to notify enrollees and allow continued use of the provider (at the same payment and cost-sharing rates) for up to 90 days if the enrollee is receiving institutional care, is terminally ill or has a "serious ongoing health condition" (e.g. severe and chronic mental illness). NAMI is concerned that amendments could be offered to strip the continuity of care provision from the Norwood-Dingell bill.

5) Shadegg-Talent Access Amendment

Representatives John Shadegg (R-AZ) and Jim Talent (R-MO) are expected to offer an amendment to expand the availability of health insurance to the nation's 42 million individuals who lack coverage. Included in this amendment will be tax credits, increases in the deductibility of health insurance premiums and significant expansion of multi-employer purchasing cooperatives (known as MEWAs, AHPs and HealthMarts). While NAMI strongly supports the goal of expanding coverage to the uninsured, the organization is opposing this amendment because of the direct threat it poses to state mental illness parity and mental illness coverage laws. AHPs, MEWAs and HealthMarts 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 28 (California, the newest and largest state was added earlier this week). Parity laws in each of these states 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 (parity is limited to annual and lifetime dollar limits) are far below most of the existing state laws. Because of the potential impact that expansion of coverage through AHPs, MEWAs and HealthMarts could have on state parity laws, NAMI is urging advocates to oppose these measures and the Shadegg-Talent amendment. Expansion of coverage that prolongs discrimination against people with serious brain disorders and their families is not progress.

More information on each the competing managed care Patient Bill of Rights proposals can be found at the following websites: and enter H.R.2723 into the search by bill number