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Full Senate Passes Managed Care Patient Bill Of Rights Legislation, Clinton Threatens Veto, Action Now Shifts To The House

Chris Marshall
For Immediate Release
20 Jul 99

As has been widely reported in the press, the Senate on July 15 passed a GOP managed care Patient Bill of Rights bill (S 1344) by a 53-47 margin. All 45 Democrats opposed the bill, while all but 2 Republicans – Chafee (RI) and Fitzgerald (IL) – supported it. The vote on the final bill followed four days of contentious partisan debate about the impact of managed care on health care access and quality, the expected cost of rival Democratic and Republican bills and whether or not these proposals would result in more Americans losing their health insurance.

Immediately after the Senate passed the bill, President Clinton renewed his pledge to veto the bill as inadequate. The Administration’s main objections to the Senate bill are the absence of provisions: a) allowing consumers to sue health plans, b) applying standards in the bill to all health plans (not just employer sponsored self-insured ERISA plans), and c) giving doctors and patients the final say over determining "medical necessity." Both sides are continuing to point to polls showing the public firmly behind their positions.

Against this backdrop, the House is expected to take up the managed care issue, perhaps as early as this week. The House Education and Workforce Committee has already begun work on a package of bills (see the July 8 NAMI E-News Vol. 00-3 for details), but is currently deadlocked over the issues of liability and medical necessity. The House Commerce Committee may begin work on a consensus package as early as July 22 (see Action Alert below).


During last week’s managed care debate, the Senate considered a number of amendments of concern to adults and children with severe mental illnesses and their families. Without exception, the Senate rejected amendments offered by Democrats that would have either broadened consumer protections in the GOP bill, or made managed care standards legally binding (rather than voluntary) on health plans. A number of amendments offered by Republicans were approved, many of which varied in terms of the number of people they would apply to, and whether or not health plans would be required to implement specific requirements, or simply make a service available to enrollees.

Because of the complex nature of Senate rules, there were few straight "up-or-down" votes on specific issues. Instead, Senators spent most of their time offering and debating complicated and confusing "1st and 2nd degree" amendments to separate underlying Republican and Democratic bills. For example, while there was considerable discussion about the issue of restrictive drug formularies imposed by health plans on doctors and consumers, Senators were precluded from voting on an amendment to require health plans to allow access to off-formulary medications at no extra cost. Likewise, an amendment on access to clinical trials covered only trials for cancer treatment and excluded all other serious illnesses.

In the end, the votes that drew the most public attention were on: a) "scope" of the bill (i.e., whether to cover all 161 million insured Americans, or only 48 million people in ERISA self-insured plans), b) plan liability (whether or not consumers should be allowed to sue health plans for damages in state court) and c) medical necessity (whether doctors or health plans should have final say in determining if a service should be covered). In each case, the Senate’s Republican majority rejected Democratic amendments, with three or fewer Republican senators breaking ranks.

Included below are details of the final Senate-passed package:

1) access to specialists – ERISA self-insured plans would only have to guarantee that patients can visit medical specialists on a timely basis, but such plans may require that specialty care first be approved by a patient’s primary care physician. Plans may also charge an enrollee more if an individual elects to go outside their plan’s physician network to find a specialist. The Senate rejected an access to specialist amendment offered by Senator Tom Harkin (D-IA) that would have covered all health plans, not just self-insured plans, and would have allowed individuals with chronic health care needs to have a "standing referral" to a relevant specialist.

2) external grievance systems – all employer-sponsored health plans (fully insured and ERISA, but not self-employed and state and local government plans) would be required to have an external appeals system in place for enrollees who wish to challenge a decision by a plan not to pay for care that is part of its benefits package. An estimated 123 million Americans would be covered by this provision. On a near party-line vote, Senators rejected Democratic amendments to strike language allowing the health plan to select the external review body and to give vulnerable consumers access to an ombudsman advocacy program when challenging health plan denials.

3) genetic discrimination – all heath plans, regardless of type, would be barred from charging enrollees higher fees to individuals who appear likely, based on genetic testing, to develop certain diseases (including severe mental illnesses).

4) consumer information – all health plans, regardless of the type of plan (fully-insured, ERISA, self-employed, etc.), would have to disclose information about which services they cover, how much enrollees have to pay, whether enrollees can select their own primary care doctor, and how the plan decides which treatment a patient needs (medical necessity criteria).

5) emergency services – ERISA self-insured plans only would be required to cover treatment of medical emergencies and would be barred from charging patients extra if they go to a hospital outside a plan’s network. Plans subject to this requirement would have to pay for all additional care to keep a patient medically stable, so long as a doctor gets permission from the plan, but the plan could require the patient to be discharged or transferred to one of its own hospitals.

6) clinical trials – ERISA self-insured plans only would be required to cover routine medical treatment associated with clinical trials or experimental therapies for cancer, BUT NOT for other serious illnesses including schizophrenia, manic depression, major depression and other serious brain disorders.

7) gag clauses – ERISA self-insured plans only would be prohibited from forbidding doctors from discussing expensive treatments with patients, even if those treatments are not covered.

8) continuity of care – enrollees in ERISA plans only who are either pregnant or terminally ill would be allowed to keep their physician for up to 3 months, even if their doctor is no longer a part of the plan. Senators rejected an amendment that included language that would have broadened the criteria for individuals eligible for this protection to include chronic health conditions such as serious mental illness.


House Speaker J. Dennis Hastert (R-IL) has stated publicly that he intends to have the full House vote on managed care Patient Bill of Rights legislation before the summer recess begins on August 6. In order to keep to this schedule, 2 separate committees (Commerce and Education and the Workforce) are expected to act on managed care bills over the next two weeks.


NAMI advocates are urged to contact members of the House and ask them to support amendments to the Patients' Bill of Rights to ensure that it is responsive to the needs of people with severe mental illnesses and their families. As part of these efforts, personal experiences of consumers and family members are the most effective means of communicating to House members 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."

It is likely that when the House finally votes on managed care legislation, members will be voting on a number of competing large reform packages, not on discreet amendments on specific measures. Debate and votes on specific amendments is likely to be restricted to action in committee. For this reason, NAMI advocates are urged to first contact members of the Commerce and Education and the Workforce Committees in their state’s congressional delegation to urge them to vote for amendments associated with the NAMI issues detailed below.

Committee on Commerce

Majority Minority

Thomas J. Bliley, Jr., Virginia, Chairman
202-225-2815, fax: 202-225-0011

W.J. "Billy" Tauzin, Louisiana
202-225-4031, fax: 202-225-0563

Michael G. Oxley, Ohio
202-225-2676, fax: n/a

Michael Bilirakis, Florida
202-225-5755, fax: 202-225-4085

Dan Schaefer, Colorado
202-225-7882, fax: 202-225-3414

Joe Barton, Texas
202-225-2002, fax: 202-225-3052

J. Dennis Hastert, Illinois
202-225-2976, fax: 202-225-0697

Fred Upton, Michigan
202-225-3761, fax: 202-225-4986

Cliff Stearns, Florida
202-225-5744, fax:202-225-3973

Bill Paxon, New York
202-225-5265, fax: 202-225-5910

Paul E. Gillmor, Ohio
Vice Chairman
202-225-6405, fax: 202-225-1985

Scott L. Klug, Wisconsin
202-225-2906, fax: 202-225-6942

James C. Greenwood, Pennsylvania
202-225-4276, fax: 202-225-9511

Michael D. Crapo, Idaho
202-225-5531, fax: 202-225-8216

Christopher Cox, California
202-225-5611, fax: 202-225-9177

Nathan Deal, Georgia
202-225-5211, fax: 202-225-8272

Steve Largent, Oklahoma
202-225-2211, fax: 202-225-9187

Richard Burr, North Carolina
202-225-2071, fax: 202-225-2995

Brian P. Bilbray, California
202-225-2040, fax: 202-225-2948

Ed Whitfield, Kentucky
202-225-3115, fax: 202-225-3547

Greg Ganske, Iowa
202-225-4426, fax: 202-225-3193

Charlie Norwood, Georgia
202-225-4101, fax: 202-225-0279

Rick White, Washington
202-225-6311, fax: 202-225-3524

Tom Coburn, Oklahoma
202-225-2701, fax: 202-225-3038

Rick Lazio, New York
202-225-3335, fax: 202-225-4669

Barbara Cubin, Wyoming
202-225-2311, fax: 202-225-3057

James E. Rogan, California
202-225-4176, fax: 202-225-5828

John Shimkus, Illinois
202-225-5271, fax: 202-225-5880

John D. Dingell, Michigan
Ranking Democrat
202-225-4071, fax: 202-226-0371

Henry A. Waxman, California
202-225-3976, fax: 202-225-4099

Edward J. Markey, Massachusetts
202-225-2836, fax: 202-226-0340

Ralph M. Hall, Texas
202-225-6673, fax: 202-225-3332

Rick Boucher, Virginia
202-225-3861, fax: 202-225-0442

Thomas J. Manton, New York
202-225-3965, fax: 202-225-1909

Edolphus Towns, New York
202-225-5936, fax: 202-225-1018

Frank Pallone, Jr., New Jersey
202-225-4671, fax: 202-225-9665

Sherrod Brown, Ohio
202-225-3401, fax: 202-225-2266

Bart Gordon, Tennessee
202-225-4231, fax: 202-225-6887

Elizabeth Furse, Oregon
202-225-0855, fax: 202-225-9497

Peter Deutsch, Florida
202-225-7931, fax: 202-225-8456

Bobby L. Rush, Illinois
202-225-4372, fax: 202-226-0333

Anna G. Eshoo, California
202-225-8104, fax:202-225-8890

Ron Klink, Pennsylvania
202-225-2565, fax:202-225-2274

Bart Stupak, Michigan
202-225-4735, fax: 202-225-4744

Eliot L. Engel, New York
202-225-2464, fax: 202-225-5513

Thomas C. Sawyer, Ohio
202-225-5231, fax: 202-225-5278

Albert R. Wynn, Maryland
202-225-8699, fax:202-225-8714

Gene Green, Texas
202-225-1688, fax: 202-225-9903

Karen McCarthy, Missouri
202-225-4535, fax: 202-225-4403

Ted Strickland, Ohio
202-225-5705, fax: 202-225-5907

Diana DeGette, Colorado
202-225-4431, fax: 202-225-5657

Committee on Education and the Workforce


William (Bill) Goodling, Pennsylvania,

Thomas E. Petri, Wisconsin, Vice Chairman

Marge Roukema, New Jersey

Harris W. Fawell, Illinois

Cass Ballenger, North Carolina

Bill Barrett, Nebraska

Peter Hoekstra, Michigan

Howard P. "Buck" McKeon, California

Michael N. Castle, Delaware

Sam Johnson, Texas

James M. Talent, Missouri

James C. Greenwood, Pennsylvania

Joe Knollenberg, Michigan

Frank Riggs, California

Lindsey O. Graham, South Carolina

Mark E. Souder, Indiana

David M. McIntosh, Indiana

Charlie Norwood, Georgia

Ron Paul, Texas

Bob Schaffer, Colorado

John E. Peterson, Pennsylvania

Fred Upton, Michigan

Nathan Deal, Georgia

Van Hilleary, Tennessee

Joe Scarborough, Florida


William (Bill) Clay, Missouri

George Miller, California

Dale E. Kildee, Michigan

Matthew G. Martinez, California

Major R. Owens, New York

Donald M. Payne, New Jersey

Patsy T. Mink, Hawaii

Robert E. Andrews, New Jersey

Timothy J. Roemer, Indiana

Robert C. (Bobby) Scott, Virginia

Lynn C. Woolsey, California

Carlos A. Romero-Barceló, Puerto Rico

Chaka Fattah, Pennsylvania

Ruben Hinojosa, Texas

Carolyn McCarthy, New York

John Tierney, Massachusetts

Ron Kind, Wisconsin

Loretta Sanchez, California

Harold E. Ford, Jr., Tennessee

Dennis J. Kucinich, Ohio

NAMI urges members of the House Commerce and Education and Workforce Committees to include the following provisions in any managed care Patient Bill of Rights:

1) access to "off-formulary" medications

Several of the current proposals before the House include exceptions for "non-formulary" medications (i.e., drugs not on a plan’s list). Plans would be able satisfy this requirement simply by charging enrollees a higher co-payment when an off-formulary medication is selected. NAMI also supports efforts to bar health plans from charging unfair co-payments and deductibles on prescriptions for "off-formulary" medications and to prohibit health plans from denying access to FDA-approved drugs on the basis of the medication being "investigational" or "experimental." As NAMI members know first-hand, for years access to the newest and most effective medications for schizophrenia and bipolar disorder have been blocked out of concerns over cost, rather than clinical benefit.

2) internal and external grievance procedures

Most of the bills now under consideration in the House require all health plans to establish internal and external appeal processes and require that cases be reviewed by doctors with relevant expertise. Most of these bills also require that decisions of independent review panels be legally binding upon health plans. NAMI is urging that House members support a further requirement that would prevent a plan from being able to select the independent third-party review panel. NAMI urges all House members to support amendments that would make external review processes 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) protection against involuntary disenrollment

NAMI supports a proposal to bar health plans from involuntarily disenrolling individuals with severe mental illnesses for conduct or behavior related to the very symptoms of their illness. Several recent studies of the managed care industry have found instances where plans have been able to expel enrollees for disruptive behavior, missed appointments, etc. – in many cases, the very symptoms of schizophrenia, manic-depression and other brain disorders. Opponents of this proposal have argued that such a protection is already covered by the Americans with Disabilities Act (ADA) and the Health Insurance Portability and Accountability Act (HIPAA).

4) access to specialists

Most of the managed care bills in the House 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. Several proposals would also require networks to have specialists of "age-specific" expertise (i.e. pediatric specialists, including child and adolescent psychiatrists). In addition to supporting these reforms, NAMI is also urging inclusion of a "standing referral" provision (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 Opposes AHP/MEWA and "Health Mart" Proposals

In addition to managed care consumer protection legislation, the House Commerce and Education and the Workforce Committees are also weighing proposals to vastly expand the use of multi-employer purchasing cooperatives (known as MEWAs, AHPs and Health Marts) to expand coverage to uninsured workers and their families. While NAMI strongly supports the goal of expanding coverage to the 41 million Americans without health insurance, we are opposed to doing so through extension of ERISA – the federal law that allows employers to self insure and exempt their plans from state regulation.

In recent weeks, the number of states that have enacted mental illness parity bills has expanded to 27. In each of these 27 states, these 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 (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 Health Marts could have on state parity laws, NAMI is urging advocates to oppose these measures.