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Chairman Bilirakis, Congressman Brown, and Distinguished Members of the Subcommittee:
It is an honor to testify before you today. I commend the members of this subcommittee for their extensive efforts in addressing the critical issue of consumer protection in health care. While I am testifying today in my individual capacity, I was a member of the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry and chaired the Subcommittee on Consumer Rights, Protections, and Responsibilities, which drafted the Commission's Patients Bill of Rights. As Congress considers legislation in this area, I am grateful for the invitation to participate in this hearing and provide input into this process. As a user of two artificial legs since the age often, I can attest to a long history of interaction with the American health care system. I have had five surgical operations and extensive medical rehabilitation from rehabilitation hospitals and other providers over the past 25 years. I have consulted numerous medical specialists and have had ten sets of prosthetic limbs provided by seven different prosthetists in five different states. I have been given the opportunity to access the health care that meets my needs. With high quality care, I have been able to live completely independently, working in a good job and raising a family.
However, for many consumers, particularly people with disabilities and chronic illnesses, the past decade has brought pressures in the health care system to limit important benefits and restrict access to specialists and specialty providers.
These restrictions in the health care system are now commonplace and are having a profound impact on people's lives.
For instance, anecdotal evidence suggests that patients with traumatic physical injuries--such as spinal cord and brain injuries--who are covered by health plans that have restrictions of this nature are more likely to be sent to nursing homes rather than medical rehabilitation hospitals. Rehabilitation hospitals and units provide a far greater level of specialty rehabilitation care and generally produce better clinical outcomes for persons with severe physical disabilities. These specialty hospitals and physicians and other providers with training and experience in medical rehabilitation are critical to high quality and cost effective health care and should not be arbitrarily restricted.
The pressures within managed care networks to restrict access to specialty care manifest themselves in the continuing erosion of public confidence in our health care system. My intent is not to discredit managed care, for managed care that is managed well can lead to major improvements in quality. My intent is to stress the importance of making sure that managed care plans serve all users of care at comparable levels of quality, regardless of the frequency or complexity of services a particular enrollee needs. Above all, health plans, particularly managed care plans, must not sacrifice sound medical decisions to considerations of the plan's bottom line.
I would like to focus my remarks on the Patients Bill of Rights and Responsibilities that was developed by the President's Commission. As you know, Mr. Chairman, the Commission's Bill of Rights was translated into legislative language and now forms the basis of the Patients Bill of Rights Act, H.R. 358. The access to specialty care provisions in that bill closely parallel the Commission's recommendations on this issue. There are a number of other bills that also address the access to specialty care issue, some of which have been sponsored by distinguished members of this subcommittee. I commend the subcommittee for examining closely the specialty care issue, for I believe that any law that purports to protect patients must include provisions ensuring access to specialists, particularly for people with disabilities and chronic illnesses.
The Need for Federal Legislation
Other than several federal health care programs, the American health care system is largely a market-based system. The hallmark of a well- functioning marketplace is the concept of competition, and optimally, improvements in quality and consumer satisfaction that come from this competition. But the federal government often establishes certain ground rules within which the American marketplace must function. The antitrust and securities laws are good examples of federal rules that provide structure to a well-functioning competitive market. The market in health care also requires structure in order to function well. Without the establishment of basic ground rules that will prompt the health care market to compete on quality and consumer satisfaction, the health care market will compete based on the avoidance of risky patients.
I am not an advocate of micro managing the health care marketplace or stifling some of the progress the health care industry has made in improving quality while reducing the rate of health care inflation. I am an advocate for the creation of a basic set of consumer protections at the federal level that all health plans must meet, including self- funded ERISA plans. Without federal legislation, health plans that operate under the Employee Retirement Income Security Act (ERISA) will be free to deny consumers basic rights that health plans subject to state laws may be required to provide.
Unless all health plans are subject to the same set of consumer protection standards, plans that do not adhere to such standards will be at a distinct competitive advantage in the marketplace. Without federal standards to level the playing field, there is actually a disincentive to improve the quality of care, because those plans that develop a reputation for high quality and good outcomes will be adversely selected by individuals who need health services the most. Competition within a framework that protects consumers will have a significant impact on the quality of care and. the confidence that Americans have in their health care system.
The Commission's Recommendations
This is the underpinning behind the Patients Bill of Rights and Responsibilities recommended to the President by the Commission. The Patients Bill of Rights was drafted after months-long negotiations between a very diverse panel of representatives, including consumers, patients, providers, health insurers, health plans, large and small businesses, labor, state and local governments, and health quality experts. Virtually every major sector of health care was actively engaged in the Commission's efforts. The Commission operated under a rule of consensus, which had the practical effect of requiring unanimous support for any recommendation before it went forward. While the Commission was able to reach consensus as to the substance of the Patients Bill of Rights, it was not able to reach consensus as to the implementation and enforcement of these rights; whether they should be enacted into law or implemented on a voluntary basis.

This was not surprising, however, due to the diversity of the Commission's members and the rule of consensus, or more accurately, unanimity. It is unfortunate, though, that some of the same constituencies that were at the table, engaged in the Commission's process, and in agreement with the final version of the Patients Bill of Rights are now actively opposing the creation of these very standards for all consumers.
How the Process Impacted the Substance
The seven rights on which the Commission was able to reach consensus derive from common elements included in the previous work of numerous organizations representing the entire health care spectrum, from the American Association of Health Plans to the National Committee for Quality Assurance to Families USA. The Commission's Subcommittee on Consumer Rights met in open session on seven occasions over a six- month period, heard from numerous witnesses, and considered background papers on each subject. The Subcommittee reviewed two or three drafts of each chapter and conferred with the full Commission until refinements were made and consensus was achieved on the overall document.
The process of reaching virtual unanimity on a set of patient rights that the Commission members agreed should apply to all consumers was a difficult one. All of the major health care constituencies were engaged in the process and many compromises were made during the course of debating and drafting the substance of each patient right. Many wanted to go much farther, establishing a patient right to certain mandated benefits. This and other proposals either found their way into the preamble of the Bill of Rights or were taken off the table due to considerations of cost, lack of time for full debate, or claims of micro-managing the health care system.
The point is that the final Patients Bill of Rights that emerged from the Commission represents a consensus set of patient protections, a moderate approach to ensuring that all health care consumers have the tools they need to access the health care they require. Each of the seven rights are integral to truly protecting consumers and improving the health care system and each right is diminished when one of the other rights is not present. In my view, any legislation that purports to adequately protect patients must include these elements.
The Bill of Rights Should Apply to Everyone
Since the announcement of the Patients Bill of Rights in November 1997, the Clinton Administration has implemented these rights across each of the federal agencies that administer federal health programs, including Medicare, Medicaid, the FEHBP, the VA health system, the Department of Defense programs, the Indian Health Service, and the Department of Labor. In total, by the end of 1999, one third of the American people will be covered by the Patients Bill of Rights. It is now in the hands of Congress to extend these basic consumer protections to the rest of the American population.
While the creation of the Advisory Commission was largely, spurred by consumers' problems with managed care plans, as already stated, the Commission felt strongly that these protections should apply to all health care consumers in all health plans receiving care in all health care settings.
Access to Specialists
This provision in the Patients Bill of Rights derives from one of the principal complaints of consumers in managed care plans; restricted access to specialty care providers. The Commission heard testimony from a woman with epilepsy whose long term relationship with her neurologist was interrupted when she joined a network plan, even though the plan initially stated that she could continue seeing her current providers. The Commission effectively rejected the "any willing provider" approach to ensure adequate choice of provider, but established a number of provisions that assist consumers in accessing appropriate specialty care.
The Commission's choice-of-provider provisions have three aspects that are directly relevant to improving health care quality: network adequacy; standing referrals; and transitional care. The network adequacy requirement ensures that enrollees in a health plan that utilizes a network of providers will have adequate in-network access to the specialty providers and professionals necessary to provide enrollees with the full range of benefits offered by the plan. To meet this requirement, plans would have to offer in-network providers with an appropriate degree of specialization and within a reasonable proximity to enrollees. If a plan did not provide adequate in-network access to specialty care, it would be obligated to provide referrals to out-of-network specialists, but at no greater cost to the patient than in-network care.
The standing referral requirement would permit enrollees with chronic or disabling conditions to have direct access to specialists without needing repeated referrals from primary care providers. Plans would have to permit an adequate number of direct access visits but reasonable limits could be imposed before a patient would be required to revisit his or her primary care provider. For a patient with a complex or serious medical condition, direct access to specialists under an approved treatment plan can be highly cost effective, eliminating the need for unnecessary primary care visits when specialty care is required.
Some of the patient protection bills in this Congress also permit patients with "ongoing special conditions" to select a specialist as a primary care provider. While the Commission could not reach consensus on this approach, this provision makes imminent sense for people with chronic illnesses such as multiple sclerosis and similar conditions.
The transitional care provision would allow patients who are undergoing a course of treatment for a chronic or disabling condition (or who are pregnant) to continue seeing their current primary and specialty care providers for up to 90 days in the event of a disruption in care. For instance, if a health plan were to become insolvent, transfer ownership, or stop serving enrollees within a state, or if a provider were to be dropped from a plan's network for any reason other than "cause," the enrollee would be able to continue seeing his or her same providers for up to 90 days while suitable alternative providers are contacted. In addition, under the Commission's recommendations, women would have direct access to women's health services.
These policies would improve the quality of care by ensuring that managed care enrollees get all the necessary and appropriate care covered by their health plan, including specialty care. It will also be cost-effective by guaranteeing that patients with . disabilities and chronic conditions will be able to access specialty providers without first being required to make an unnecessary visit to a primary care provider. Finally, ensuring that patient care is not disrupted after involuntary changes in insurance coverage will enhance quality.
Point-of-Service Option for Managed Care Enrollees
While the Commission did not reach consensus on the point-of-service option, this provision is a critical patient protection when a closed panel HMO or network plan is the consumer's only option in obtaining health coverage. The point of service provision would require closed panel plans to permit enrollees to elect to purchase an option at the time of enrollment to access out-of-network providers, at an additional premium and/or co-payment to the enrollee. The option could be structured to create minimal costs for the health plan or employer sponsor and tremendous benefits for enrollees who develop the need or desire to obtain care from providers and/or specialists of the enrollee's choice who are not within the plan's network of providers. The point of service option is an important element of effective access to specialists and maximizes patient choice of provider.
Access to Emergency Services
To build confidence among the American people that emergency care will be covered by health plans when and where an emergency arises, the Commission included provisions on access to emergency services in the Patients Bill of Rights. The Commission agreed that health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a "prudent layperson" could reasonably expect the need for emergency care. Similar provisions were enacted as part of the Balanced Budget Act of 1997 for Medicare and Medicaid patients.

LOAD-DATE: March 25, 1999

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