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Full Senate Set To Take Up Managed Care Patient Bill Of Rights Legislation Next Week

Chris Marshall
For Immediate Release
8 Jul 99

After two years of delay and weeks of partisan wrangling, Senate leaders reached agreement on June 29 to take up managed care legislation the week of July 12. Under a "unanimous consent" agreement reached by Senate leaders, there will be four days of debate, ending on July 15. The breakthrough in partisan negotiations came after more than a week gridlock in the Senate in which Republicans were unable to stop Democrats from offering popular managed care reform amendments to unrelated pending annual spending bills. As part of the agreement, Republican leaders agreed to a full and fair debate on managed care, and Democrats agreed that they would stop holding up routine appropriations bills.

It is expected that on July 12, the Senate will start with the managed care reform bill passed by the Senate Health, Education, Labor and Pensions (HELP) Committee this past spring (S 326). The base bill that will come before the Senate next week is also expected to include separate provisions to expand coverage for uninsured workers and their families through medical savings accounts (MSAs), and possibly, multi-employer purchasing cooperatives, known as AHPs (see below).

NAMI has important concerns regarding S 326 that 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, there are also concerns that the bill, as currently written applies only to health plans offered by employers that self-insure under the federal ERISA law. This means that the managed care standards in the bill would not apply to commercial plans that are fully insured and regulated by the states (48 million of the 161 million insured Americans are enrolled in ERISA plans). Under current law, self-insured ERISA plans are exempt from state regulation.


Most of the four days of debate on the Senate floor next week are expected to be consumed with consideration of amendments to add binding federal standards on managed care plans to the legislation. NAMI is supporting many of these changes as positive additions to 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 advocates are urged to contact their senators and ask them to support amendments to improve S 326 to make it more responsive to the needs of people with severe mental illnesses and their families. While it unclear at this point which amendments will be brought up at which point during the four days of debate on the Senate floor, it is critically important that senators be informed about how each of these proposals affect 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 senators 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

NAMI Urges senators to act on and pass the following amendments:

1) access to "off-formulary" medications

The current version of S 326 requires self-insured health plans to provide 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. An amendment is expected to be offered to expand S 326 by barring health plans from imposing higher co-payments for recommended medications that are off a plan's formulary.

A second formulary amendment is also expected to prohibit health plans from denying access to FDA-approved drugs on the basis of the medication being "investigational" or "experimental." NAMI is strongly supporting both amendments and urges that advocates contact all senators in support of the strongest possible formulary provisions. 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

Both S 326, and the Democratic alternative (S 6), 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, S 326 also includes a provision allowing the plan to select the independent third-party review panel. NAMI urges all senators 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

During HELP Committee debate on S 326, 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. 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). While the amendment was defeated on a party-line vote by the HELP Committee, Senator Wellstone is considering offering his amendment on the Senate floor next week. NAMI strongly supports the Wellstone Amendment and urges all senators to bar health plans from disenrolling participants for the very symptoms of their illness.

4) access to specialists

Both S 326 and S 6 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 bills would also require networks to have specialists of "age-specific" expertise (i.e. pediatric specialists, including child and adolescent psychiatrists). However, S 326 does not contain proposals, 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. Both of these amendments were rejected by the HELP Committee. NAMI strongly urges senators 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.

5) medical necessity

One of the key issues expected to be debated next week in the Senate is where to rest authority for defining medical necessity - a key consideration in insurance coverage decisions. S 326 would grant health plans wide discretion to establish and enforce their own criteria for defining medical necessity. By contrast, S 6 would give doctors and clinicians authority to determine whether treatment is medically necessary - according to "generally accepted medical practice." NAMI is supporting an amendment, expected to be offered by Senator Dianne Feinstein (D-CA) that would give doctors the ability to determine medical necessity within the parameters of "generally accepted medical practice." NAMI is also supporting a further refinement to the criteria for medical necessity, insisting that medical necessity reflect the importance of maintaining and restoring function, not just improving function.

6) continuity of care

Both S 326 and S 6 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. However, S 326 does not specifically spell out the circumstances upon which continuous care and treatment could occur. NAMI is supporting an amendment that would expand the ability of enrollees to require their health plans to extend coverage with a specific provider by adding "serious ongoing health conditions" (e.g. severe and chronic mental illness) to the list of criteria for which continuity of care would be required.

House Action

In the House, action on managed care patient bill of rights legislation is moving at a slower pace. House Democratic leaders are continuing efforts to bring their bill (HR 358) to the full House through a procedure known as a discharge petition. A discharge petition requires 218 signatures for a bill to bypass the normal committee process (170 members have signed thus far). A separate consensus package that includes both patient protections and coverage expansion (put forward by Rep. Charles Norwood (R-GA) and key leaders of the Commerce Committee) appears to be stalled.

At the same time, the leadership of the House Education and the Workforce Committee, which has jurisdiction over ERISA self-insured health plans, has been working on a package of 8 separate bills (HR 2041 through 2047, 2089). These bills contain a range of managed care reforms including requirements for plans to establish external appeals, disclose what benefits are available, and cover emergency room services based on a "prudent layperson" standard. However, this package limits provisions governing access to specialists (pediatricians and ob-gyns) and removes all other decisions regarding binding managed care standards to a proposed federal commission.

NAMI Opposes AHP/MEWA Proposal

The Education and the Workforce Committee package also contains a proposal to vastly expand the use of multi-employer purchasing cooperatives (known as MEWAs and AHPs) 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 law.

In recent weeks, the number of states that have enacted mental illness parity bills has expanded to 25. In each of these 25 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 and MEWAs could have on state parity laws, NAMI is urging advocates to oppose these measures. In particular, NAMI is urging House members to oppose HR 2047 and an expected amendment on the Senate floor next week to include AHPs in the Senate managed care bill (S 326).