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Copyright 1999 Federal News Service, Inc.  
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The Pain Care Coalition is pleased to present this statement on pain management and improving end-of-life care. The Pain Care Coalition is a national coalition that advocates for responsible pain care policies at the federal level. The Coalition was formed in 1998 by concerned organizations representing the interests of pain care professionals and their patients. Constituent members of the Coalition represent a broad spectrum of physicians and other health care professionals involved in the diagnosis and treatment of patients suffering from acute and chronic pain. Members also include those professionals who conduct biomedical and related research into the causes of pain and the effectiveness of diagnostic and therapeutic approaches to freeing patients from pain or lessening the pain of those who must live with it.
The Coalition appreciates the Committee's interest in the issue of pain care. Pain is a major public health problem in this country. It effects people of all ages and at every stage of life. It is generally recognized that throughout the nation, and regardless of age, setting, or health status, severe pain is often under-treated or mistreated, if not overlooked entirely. Fifty million Americans are partially or totally disabled by pain, and 45 percent of all Americans seek care for persistent pain at some point in their lives. Pain imposes a tremendous burden on these individuals and their families. It also imposes a tremendous burden on the economy, and upon the health care system. For example, migraine alone affects over 24 million people, the majority of them women in their 30's and 40's. This one painful disorder alone leads to 157 million lost workdays each year at a cost to economic productivity estimated at over $17 Billion. Costs attributable to low back pain are even higher, and the total cost of pain to the economy is now estimated at over $100 Billion.Pain accompanies a wide range of other clinical conditions such as cancer, heart disease and arthritis. This form of pain is often referred to as "secondary" pain, because it is' secondary to a primary physical illness. For many patients, however, "primary" pain is the illness or disease. Primary pain is pain without an identifiable cause or abnormality. Migraine is a good example. Primary pain needs to be diagnosed and treated as aggressively as any other major illness. However, evidence abounds that neither primary nor secondary pain is adequately treated in this country. Recent studies of end-of-life care in hospitals, of the elderly in nursing homes, and of the general public in Michigan all reach the same conclusion: many, many people endure unnecessary suffering due to inadequate pain care.
Several bills addressing pain care issues in some manner have been introduced in this Congress. The Pain Care Coalition welcomes these initiatives as an important reflection of the growing awareness of and concern for pain as a public health priority in this country, and among policy-makers at the federal level. While the Coalition supports many of the provisions included in these bills, we are concerned that all of the proposals put forward to date are too heavily focused on end-of-life care at the expense of pain care more generally. Pain often affects patients in the prime of life when effective treatment can restore productivity and a normal life. To pain care professionals, symptom management at the end of life, while critically important, represents only one portion of the broad and complex spectrum of patients in pain which spans age groups, disease states, and diagnostic and therapeutic modalities. In terms of the sheer numbers of people who suffer from pain at various points in their lives, end-of-life care is a relatively small portion of that broader spectrum. While the needless suffering by those afflictedwith terminal illness cries out for redress, is the needless suffering of a child whose pain is not life-threatening, but keeps the child out of school, any less compelling?
Viewed in this broader context, recent proposals offered in the Congress represent relatively timid first steps. If the Federal government is to address pain as the serious public health problem which it represents, and to promote pain relief by promoting good pain care, then bolder steps are required. The Pain Care Coalition urges this Committee and other concerned Members of Congress to consider at least the following steps as part of an initial federal pain care agenda:
- Declare the first decade of the next century as the "Decade of Pain Control." More than any other single step, this would dramatize the prominence of pain as a public health problem and motivate both public and private sectors to mount a concerted effort against needless suffering.
- Authorize a focused pain care research agenda at the National Institutes of Health with increased funding for both basic and clinical research. Because pain cuts across so many diseases and disabilities, it has not been perceived as a separate disease category and has not had its own focused constituency for research funding. As a result, NIH spends pennies on pain care research in relation to the impact of pain on the health care system, the economy, and the lives of sufferers, and to the tremendous potential for continued progress in effective diagnosis and treatment.
- Require the Medicare program to recognize pain care as a medical specialty for claims processing purposes and begin tracking the public expenditure of health care dollars for different modes of treatment. Unlike the Veterans Health System, which has mounted a major pain care initiative, the Health Care Financing Administration currently has no way to measure what it is buying in terms of pain care or what its beneficiaries are getting - nor does HCFA understand the amount of money that it is wasting in misdirected or unnecessary care.
- Guarantee access to appropriate specialty care for pain, including access to centers of credentialed treatment expertise, as part of a comprehensive patient bill of rights. Adequate pain relief should be a central benefit of any health insurance plan, yet overzealous gatekeepers and restrictive provider networks prevent many patients in severe pain from reaching the practitioners and programs that could relieve their suffering. These patients are not just "locked in" to their managed care plan's network, they are virtually locked into their own pain and they often seek desperate solutions as a result. These solutions are both costly and dangerous. Relief for these individuals may be only achieved if they can obtain the services of a certified pain care specialist.
- Ensure access to emergency care for severe pain as part of any comprehensive patient bill of rights. Congress has already mandated access to emergency care for Medicare patients under the prudent layperson standard, and it should do the same for patients in other managed care plans. Seeking relief of severe and relentless pain is in and ofitself a justification for emergency care, yet managed care has a poor record of addressing the needs of patients in pain and providing prompt patient access to appropriate diagnosis and treatment by Physicians credentialed in pain medicine. If managed care plans are serious about "putting patients first," covering emergency visits for patients in severe pain is a good place to start.

In addition to these broad recommendations, the Pain Care Coalition urges the Committee to consider the following more limited suggestions in connection with certain aspects of the several bills that have already been introduced:
The Pain Relief Promotion Act of 1999 (S. 1272)
This year's version of the legislation introduced by Senators Don Nickles (R-OK) and Joseph Lieberman (D-CT) is clear in its recognition that the use of controlled substances to relieve pain - even when such use may have secondary effects that raise the risk of death - is a legitimate medical practice. However, the bill calls upon the Drug Enforcement Administration to make difficult distinctions between this legitimate medical use of controlled substances on the one hand, and physician-assisted suicide on the other, based upon the motives and intent of the treating practitioner. It is this aspect of the bill that still threatens to have a "chilling" effect on the appropriate use of controlled substances to ease pain. To address that threat, the Coalition urges the Committee to raise the standard of proof in civil proceedings brought by the DEA in cases of suspected assisted suicide. An amendment for this purpose is attached. The amendment would require the DEA to prove its case by clear and convincing evidence in any proceeding brought to suspend or revoke a DEA registration based on alleged physician assisted suicide. Theamendment would not affect registration proceedings based on other grounds. Essentially the same provision was included in the bill reported by the Senate Judiciary Committee last year.
The Pain Care Coalition also recommends that the pain care promotion initiatives in .Title II of S. 1272 be expanded to address pain care more broadly. The initiatives, while promising, are limited in scope and heavily focused on end-of-life care. A proposed substitute to achieve this purpose is also attached.
The Conquering Pain Act of 1999 (S. 941)
The Conquering Pain Act introduced by Senators Ron Wyden (D-OR) and Connie Mack (R-FL) represents a milestone in federal legislation in so far as it recognizes pain as a major public health problem in this country. However, the legislation is also heavily focused on palliative measures with a bias towards end-of-life care. The bill seems to ignore a fundamental aspect of modem pain care - that for many patients, pain is the disease, not a symptom of another illness. In these cases, the pain needs to be diagnosed and treated aggressively, and rehabilitating patients and controlling their pain is increasingly possible. The Coalition urges a broader focus on diagnosis and treatment in the bill, rather than an exclusive focus on "pain management."
The Advance Planning and Compassionate Care Act of 1999 (S. 628)
This legislation, introduced by Senators Jay Rockefeller (D-WV) and Susan Collins (RME), aims to improve end-of-life care by expanding and clarifying requirements for advancedirectives to ensure that an individual's health care decisions are complied with. The Pain Care Coalition is particularly interested in Section 8 of the bill, which would add a limited outpatient prescription drag benefit to the Medicare program targeted to patients suffering chronic pain from life-threatening disease. The Coalition urges consideration of the attached amendment, that would add intractable pain generally and acute pain at the end of life to the conditions eligible for coverage. Beneficiaries who suffer from intractable pain and pain associated with a number of end-of-life conditions now have Medicare coverage for appropriate pain medications only if they are institutionalized or if they are within the six month hospice "window." The Coalition urges Committee members to support this modest improvement to what is already a good bill.
The Pain Care Coalition applauds the Committee for holding this hearing, and for focusing badly needed attention on issues affecting pain care policy at the Federal level. The Coalition welcomes the opportunity to work with interested members of Congress to advance legislative proposals that promote appropriate pain care--care that is increasingly available to reduce needless suffering throughout the population.

LOAD-DATE: October 14, 1999

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