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Testimony on the Patients' Bill of Rights by The Honorable Donna Shalala
Secretary, U.S. Department of Health and Human Services

Before the Democratic Health Care Task Force
July 21, 1998


Good morning, Leader Gephardt, Chairman Fazio, Congressman Dingell, and members of the Democratic Health Care Task Force. I am happy to be here to discuss the importance of enacting a strong, comprehensive, and enforceable Patients' Bill of Rights.

As has been said countless times, the United States has the best medical care in the world. We have much to be proud of. But our system is not without its problems, which is what I am here to talk about today.

Managed care, when it is done right, can help us to control costs, improve the quality of care, and improve coordination of care for the chronically ill. But when managed care is administered poorly, it can damage or even destroy the critical relationship between patients and their health care providers. It can put saving money above saving lives.

Last week, I joined the President and the leaders of the American Medical Association and the American Nurses Association at a round table discussion with real patients, real doctors, and real nurses -- not some actors who are hired to play them on T.V.

What we heard were real-life stories about the tragedies that occur when the rights of patients are not protected. We heard stories of delays in care that allowed diseases to progress rather than recede. We heard about seriously ill people being turned away from the emergency room because they weren't deemed to be sick enough. We heard about bureaucratic snafus that left patients to fend for themselves. And we heard about families destroyed by the unnecessary, premature death of a mother or a child because the health plan ignored the advice of health care professionals until it was too late.

I had the honor of co-chairing, along with Labor Secretary Alexis Herman, the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry. The Commission included representatives of patients, physicians, nurses, labor unions, large and small employers, and health plans. Last November, the Commission recommended a strong and comprehensive Patients' Bill of Rights for every American. When he received our report, the President called on Congress to enact legislation to guarantee these rights. And in his State of the Union address earlier this year, the President reiterated that call.

The Patients' Bill of Rights guarantees that consumers who face a medical emergency can get emergency care when and where they need it.

It assures that people living with severe and chronic medical conditions can see a specialist of their choice.

It guarantees a pregnant women the right to see her doctor all the way through her pregnancy even if her health plan decides to drop that doctor from its network.

It provides an independent and impartial appeals process that puts the final decision about care back in the hands of medical professionals where it belongs.

And it protects patients against discrimination or violations of their confidentiality.

In February, the President signed an Executive Memorandum to extend the Commission's Bill of Rights to 85 million Americans enrolled in federal health plans, including Medicare and Medicaid. But the only way to guarantee these rights for all Americans is for the Congress to enact legislation before it adjourns this fall.

For months, the Republican leadership in both the House and the Senate said there was no need for legislation. They even called on the insurance industry to "declare war" on the bill of rights and to defeat it. Now, nine months after the President first called for bipartisan legislation and with fewer than 40 legislative days left on the calendar, the House and Senate leaders have finally decided to step up to the plate. Sadly, the Republican proposals, while differing in some details, do not provide the kind of protection that the American people need and deserve. They are certainly too little; we hope they are not too late.

Let me highlight for you a few of the concerns that we have with the Republican proposals:

First, the Senate plan fails to provide any rights, any protection, to nearly 100 million American consumers -- many of them the employees of small and medium-sized companies. This is a shocking omission and one that defies explanation.

Second, both the House and Senate proposals fail to guarantee access to specialists for consumers with chronic or severe condition without getting the approval of a gatekeeper. For example, a person who has been diagnosed with cancer would not have the right to go directly to an oncologist. A person with a heart condition would not be guaranteed the right to see a cardiologist.

Third, neither proposal would limit or require the disclosure of financial incentives and arrangements that could encourage the provision of fewer services.

Fourth, the House plan does not provide continuity of care for people who are under a doctor's care when a health plan decides to summarily drop that physician from their network. In other words, a pregnant women in her second trimester would not be guaranteed the right to keep seeing her doctor through delivery.

Finally, neither of the Republican proposals would enforce the rights they claim to provide to consumers. Consumers who are injured, maimed, or even killed as a result of a decision by a health plan to overrule a doctor would not be eligible for any compensation for the injuries they incur.

Beyond what is missing from the Republican bills, I am troubled by some of what is included. The Republican leadership has purposely included several "poison pills" designed to kill any chances we have of bipartisan legislation this year. For example, despite the bipartisan Kennedy-Kassebaum Act, which established a four-year test of medical savings accounts, the Republicans want to push through an immediate expansion of these risky, untested insurance schemes. They also want to place a cap on malpractice awards despite the fact that even the A.M.A. has said that item should be taken off the table. And, finally, they want to allow small companies to drop out of the insurance market and self-insure. These provisions have no place in this legislation and should be dropped.

All Americans need the full range of enforceable rights that the President and your caucus support. We stand ready to work with members of both parties to achieve the President's goals and look forward to the opportunity to complete the process we began nine months ago.

I'd be pleased to answer any questions you might have. Thank you.


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