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Legislative Update: Senate Committee Passes Managed Cared Patients' Bill Of Rights Legislation

Chris Marshall
For Immediate Release
29 Mar 99
Despite deep partisan divisions, the Senate Health, Education, Labor and Pensions (HELP) Committee on March 18 reported out its version of the Patients’ Bill of Rights (S 326). The legislation was approved on a party line vote of 10-8. Throughout two days of deliberations, nearly every amendment offered by Committee Democrats was rejected. In response, Senate Democrats and the White House went on record in opposition to the Committee bill.

The chief concern expressed by the bill’s opponents relate to both the lack of specificity in the consumer protections that would apply to health plans and the absence of legally enforceable remedies against plans. In addition, Democrats also objected to the fact that S 326 applies only to health plans offered by employers that self-insure under the federal ERISA law – the standards in the bill would not apply to commercial plans that are fully insured and regulated by the states. Under current law, self-insured ERISA plans are exempt from state regulation. During the Committee’s mark-up members rejected an amendment offered by Senator Edward M. Kennedy (D-MA) that would have extended the consumer protections in the bill to all health plans. It failed on a party-line vote.

The next step for the Patients’ Bill of Rights is in the Senate Finance Committee. After that, the bill is expected to reach the full Senate later this spring. In the House, a similar partisan struggle over both the scope of protections in Patients’ Bill of Rights and the ability of enrollees to sue health plans for denial of medically necessary treatment is looming. As in the Senate, the House GOP bill maintains a bar on lawsuits in state court against self-insured ERISA plans. Separate Republican and Democratic leadership bills are likely to be acted on after the Easter recess (which begins today and runs through April 12).


Another major issue of contention between the two parties is where to rest authority for defining medical necessity – a key consideration in insurance coverage decisions. The Republican leadership bills (HR 448 and S 326) would give health plans wide discretion to establish their own criteria for defining medical necessity, while the Democratic leadership bills (HR 358 and S 6) would give doctors and clinicians authority to whether treatment is medically necessary – according to "generally accepted medical practice."

Despite the current partisan disputes over Patients’ Bill of Rights legislation, there is still optimism in Congress that disputes over liability and medical necessity can be worked out and legislation can be enacted this year. Throughout this debate, NAMI will continue to push for meaningful protections that help people with severe mental illnesses and their families access the most advanced treatments for serious brain disorders such as schizophrenia, manic-depression, major depression and severe anxiety disorders. Among NAMI’s top priorities in this debate are curbs on the use of restrictive prescription drug formularies that block access to the newest, most effective medications, access to the most appropriate specialists and the availability of an independent, binding, third-party clinical appeals process. A copy of NAMI’s "Where We Stand" policy paper is available on the web at:


NAMI advocates are urged to continue their efforts to push for a strong managed care consumer protection bill that ensures access to treatment for severe mental illnesses. Personal experiences of consumers and family members are the most effective means of communicating to members of Congress how health plans are failing to provide access to the newest and most effective treatment 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


During the Committee’s "mark-up" of S. 326, a number of amendments of concern to NAMI were taken up.

1) access to "off-formulary" medications

By a unanimous vote, the Committee passed an amendment authored by Senator Susan Collins (R-ME) that would require self-insured health plans to provide exceptions for "non-formulary" medications (i.e., drugs not on the 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. The Committee also rejected an amendment offered by Senator Christopher Dodd (D-CT) that would have expanded the Collins Amendment by barring plans from imposing higher co-payments for medications off the formulary. After significant debate, Senator Collins dropped language that would have required disclosure of higher cost sharing requirements associated with non-formulary drugs. A second Dodd amendment, also defeated, would have barred plans from denying access to FDA-approved drugs on the basis of the medication being "investigational" or "experimental."

2) external grievance procedures

On the issue of internal and external grievance procedures, both the Democratic and Republican plans would require all health plans to establish such appeal processes and cases be reviewed by doctors with relevant expertise. Both proposals would require that decisions are legally binding upon the health plan. However, S326 also includes a provision allowing the plan to select the independent third-party review panel. A Democratic Amendment to strike that provision failed on a party-line vote.

3) protection against involuntary disenrollment

Senator Paul Wellstone (D-MN) offered an amendment to bar 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. During debate on the Wellstone Amendment, several senators argued that such protection is already covered by the Americans with Disabilities Act (ADA) and the Health Insurance Portability and Accountability Act (HIPAA). The amendment was defeated on a party-line vote.

4) protection against retaliation for enrollees who self-pay

Senator Wellstone also offered an amendment to prohibit plans from excluding providers and/or enrollees who elect to self-pay for "behavioral health" treatment, once a plan denies coverage. Senator Wellstone argued that plans have been denying future coverage if a party self-pays and 12 states have enacted laws prohibiting such a practice. After agreeing on language allowing plans to expel providers for fraud, poor quality and self-referral, the amendment was approved.

5) access to specialists

Under both bills, health plans would be required 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 bills would also require networks to have specialists of "age-specific" expertise (i.e. pediatric specialists). An amendment by Senator Tom Harkin (D-IA) to expand these protections to allow for a "standing referral" (allowing access to a specialist over a longer period without authorization from a plan) and to permit certain specialists to act as primary care physicians was defeated.

6) continuity of care

Both bills 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, or is terminally ill. A Democratic amendment to expand the conditions upon which continuity of care could occur was defeated.

7) ombudsman program

An amendment offered by Senator Paul Wellstone (D-MN) to authorize a program to provide for advocacy assistance in dealing with plan benefits and appeal procedures for vulnerable plan enrollees – including individuals with severe mental illnesses – was defeated on a party-line vote.

Included below is separate summary of S 326 as reported by the HELP Committee. 1) SUMMARY OF S.326 -- "THE PATIENTS' BILL OF RIGHTS ACT" (as adopted by the Committee)

The Patients' Bill of Rights Act," has six major components that will provide consumer protections, enhance health care quality and increase access. These are:

A. Consumer protection standards for self-funded plans:
Since States already regulate insured health plans, the bill provides that the following standards would apply to the 48 million Americans covered by self-funded group health plans governed exclusively by the Employee Retirement and Income Security Act (ERISA).

Emergency Care: Plans would be required to use the "prudent layperson" standard for providing in network and out of network emergency screening exams and stabilization.

Choice of Plans: Plans that offer network-only plans would be required to offer enrollees the option to purchase point-of-service coverage. Small employers with 50 or fewer workers would be exempt. Also exempt would be group health plans that offer two or more options with significantly different providers. Plans could charge higher premiums and cost sharing for the POS option.

OB-GYN/Pediatricians: Health plans would be required to allow direct access to obstetricians/gynecologists and pediatricians for routine care without referrals.

Continuity of Care: Plans who terminate or non renew providers from their networks would be required 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, or is terminally ill; and, in the case of a pregnancy through post-partum care.

Access to Medication: Health plans that provide prescription drugs through a formulary would be required to ensure the participation of physicians and pharmacists in developing and reviewing that formulary. Plans would also be required to provide for exceptions from the formulary limitation when a non-formulary alternative is medically necessary and appropriate.

Access to Specialists: Health plans would be required to ensure that patients have access to covered specialty care within the network, or, if necessary, through contractual arrangements with specialists outside the network. If the plan requires authorization by a primary care provider, it must provide for an adequate number of referrals to the specialist.

Gag Rules: Plans would be prohibited from including "gag rules" in providers' contracts or restricting providers from communicating with patients about treatment options.

B. Comparative Information:
All group health plans would be required to provide a wide range of comparative information about health insurance coverage, such as descriptions of the networks and cost-sharing information to the 124 million Americans covered by both self insured and fully insured group health plans.

C. Grievance and Appeals:
All group health plans would be required to have written grievance procedures and have both an internal and external appeals procedure for the 124 million Americans covered by both self insured and fully insured group health plans.

Time frames: Routine requests would need to be completed within 30 days, and expedited requests for care that could jeopardize enrollee's health would have to be handled within 72 hours.

Qualification of reviewers for Internal/External Appeals: Appeals for coverage determinations based on lack of medical necessity or experimental treatment must be by a provider with appropriate expertise in field of medicine involved.

External Appeals: Enrollees and their authorized providers could appeal to independent external medical reviewers for amounts above a significant financial threshold or where the enrollees' health is in jeopardy for issues based on medical necessity. They may also appeal for services that involve an experimental treatment where the enrollees' health is in jeopardy. External reviewers would include those certified as meeting specific criteria established by the State or Federal government for this purpose. The determination of an independent external review is binding on plans and issuers.

The external reviewer would be required to have relevant expertise and must consider appropriate and available information, including evidence offered by the patient and the patient's physician, expert consensus, peer-reviewed literature, and the plan's evidence-based criteria and clinical practice guidelines.

D. Genetic Information:

All group health plans and health insurance issuers would be prohibited from denying coverage, or adjusting premiums or rates based on "predictive genetic information" for the 140 million Americans covered by both self-insured and fully insured group health plans and individual health insurance plans. The term "predictive genetic information" includes individual's genetic tests, genetic tests of family members, or information about family medical history.

E. Refocusing AHCPR on Quality Improvement:

The bill would refocus AHCPR (and rename it the Agency for Healthcare Research and Quality) to encourage overall improvement of quality in the nation's health care systems. The new agency will facilitate state-of-the-art information systems, support primary care research, conduct technology assessments, and coordinate the Federal Government's own quality improvement efforts.

F. A sense of the Committee supporting improved access to health insurance:

The bill expresses the Committee's support for expanding coverage by allowing full deduction of health insurance for the self-employed, the full availability of medical savings accounts and the carryover of unused benefits from flexible spending accounts. The Finance Committee has jurisdiction regarding the enactment of these provisions.