Chronic Pain Research Alliance

U.S. Senate to Address Chronic Pain in Landmark Hearing

HELP Committee Hearing to Examine Obstacles to Relief,

Feature Testimony from Chronic Pain Research Alliance Leaders

(Washington, D.C. February 14, 2012)  The U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) will today convene the first ever hearing on chronic pain, a growing public health epidemic that affects 116 million Americans at an annual cost of $635 billion in lost productivity and health care expenditures.  The hearing, Pain in America: Exploring Challenges to Relief, will examine solutions to disparities in pain research, treatment, education and patient care, and include testimony from leaders of the Chronic Pain Research Alliance (CPRA).

“This is an important step in addressing this staggering problem that imposes enormous and potentially avoidable costs on our nation.  Pain is a major driver of rising health care costs and there are some basic steps that can be taken to reduce costs and improve care,” said CPRA leaders. “We represent millions who are debilitated by chronic pain, and appreciate that the Senate HELP Committee will hear our concerns and examine methods of implementing long-overdue changes in pain research, treatment, education and patient care. We extend our gratitude to HELP Committee Chairman Tom Harkin (D-IA) and Ranking Member Mike Enzi (R-WY) for calling this important hearing.”

The hearing, which is scheduled for 2:30 p.m. EST and will be simulcast at www.help.senate.gov, is expected to review the findings and recommendations of, as well as actions taken by the federal government in response to, the landmark 2011 Institute of Medicine (IOM) report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research. This report, undertaken as a direct result of a bipartisan amendment approved by the HELP Committee, concluded that “there is a crisis in the impact of and response to pain in America… [and that] we have a moral imperative to address this crisis.” It includes a blueprint for implementing the committee’s recommendations, assigning tasks to federal agencies, private and public institutions, as well as patient advocacy and medical professional organizations.

The hearing will feature testimony on behalf of the CPRA from Christin Veasley, a chronic pain sufferer and Executive Director of the National Vulvodynia Association, one of four organizations that lead the CPRA. William Maixner, D.D.S. Ph.D., Director of the University of North Carolina at Chapel Hill’s Center for Neurosensory Disorders and a member of the CPRA’s Scientific Advisory Council, will also testify, along with Lawrence Tabak, D.D.S. Ph.D., Principal Deputy Director of the National Institutes of Health; Phillip Pizzo, M.D., Dean of the Stanford University School of Medicine; and John Sarno, M.D., Professor of Clinical Rehabilitation Medicine at the New York University School of Medicine.

“The IOM report and today’s hearing give us renewed hope – hope that our country is listening to us, cares about our plight, and is ready to enact long-overdue change to help us regain some semblance of quality of life and return to contributing to society,” said Veasley.

In 2010, the Campaign to End Chronic Pain in Women, led by the CPRA, released a groundbreaking white paper that documented, for the first time, the human and financial toll, as well as the neglect, dismissal and discrimination that women with chronic pain experience. “The IOM highlighted this disparity in its report and we are hopeful that the HELP Committee will do the same in today’s hearing,” says CPRA leaders. “Equity demands no less.”

For more information, please visit www.endwomenspain.org. To read the Campaign’s white paper, visit: www.endwomenspain.org/sites/default/files/WIP%202011%20Report%20FINAL.pdf

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Chronic Pain Research Alliance Praises Scheduling of Historic Senate Hearing

HELP Committee to Examine Ways to Tackle Epidemic of Chronic Pain, Builds on Landmark 2011 Institute of Medicine Study

WASHINGTON, DC – February 2, 2012 – The Chronic Pain Research Alliance (CPRA) today hailed the U.S. Senate’s announcement that on February 14, 2012, it will hold a hearing to examine the issue of chronic pain, a growing public health epidemic that affects 116 million Americans at an annual cost of $635 billion in lost productivity and health care expenditures. Much of this cost is born by taxpayers, accounting for 14 percent of all Medicare spending and $99 billion in federal and state government costs.  

“This is an important step in addressing this staggering problem that imposes enormous and potentially avoidable costs on our nation.  Pain is a major driver of rising health care costs and there are some basic steps that can be taken to reduce costs and improve care,” said CPRA leaders. “We represent millions who are debilitated by chronic pain, and appreciate that the Senate Committee on Education, Health, Labor and Pensions (HELP) will hear our concerns and examine methods of implementing long-overdue changes in pain research, treatment, education and patient care. We extend our gratitude to HELP Committee Chairman Tom Harkin (D-IA) and Ranking Member Mike Enzi (R-WY) for calling this important hearing.”
 
The hearing, which is scheduled for 2:30 p.m. EST and will be simulcast at www.help.senate.gov, is expected to review the findings and recommendations of, as well as actions taken by the federal government in response to, the landmark 2011 Institute of Medicine (IOM) report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research. This report, undertaken as a direct result of a bipartisan amendment approved by the HELP Committee, concluded that “there is a crisis in the impact of and response to pain in America… [and that] we have a moral imperative to address this crisis.” It includes a blueprint for implementing the committee’s recommendations, assigning tasks to federal agencies, private and public institutions, as well as patient advocacy and medical professional organizations.
 
In 2010, the Campaign to End Chronic Pain in Women, led by the CPRA, released a groundbreaking white paper that documented, for the first time, the human and financial toll, as well as the neglect, dismissal and discrimination that women with chronic pain experience. “The IOM highlighted this disparity in its report and we are hopeful that the HELP Committee will do the same in the upcoming hearing,” says CPRA leaders. “Equity demands no less.”
 
For more information, please visit www.endwomenspain.org. To read the Campaign’s white paper, visit: www.endwomenspain.org/sites/default/files/WIP%202011%20Report%20FINAL.pdf.    

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Consumers, Health Professionals and Advocates Hail Release of Landmark Institute of Medicine Report on Relieving Pain in America

Report Provides Roadmap for Tackling Problem for 116 Million Americans

The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is led by organizational leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. For more information, visit www.endwomenspain.org.

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 Women's Advocates Confront
“Silent and Costly Epidemic” Of Chronic Pain

Washington, D.C. (June 24, 2011) – The Campaign to End Chronic Pain in Women (“the Campaign”) today released its 2011 health care policy recommendations, which could save the government billions of dollars in wasted healthcare costs each year. This update to the Campaign’s groundbreaking 2010 report – Chronic Pain in Women: Neglect, Dismissal and Discrimination – offers recommendations in advance of a major, new, Congressionally-mandated study and recommendations on pain to be released by the Institute of Medicine (IOM) on June 29, 2011.

“Up to 50 million American women suffer from one or more chronic pain conditions. Our country’s failure to support research and train medical professionals in the appropriate diagnosis and treatment of these conditions adds as much as $80 billion a year in direct and indirect costs to American taxpayer’s health care bill,” said Terrie Cowley, President of the TMJ Association, one of the four organizations leading the Campaign.   

 “Chronic pain is a silent and very costly epidemic. The good news is that solutions would not only improve the lives of millions who suffer, but they would also cut health costs and improve economic productivity,” added Kim McCleary, President and CEO of the CFIDS Association of America, one of the four organizations leading the Campaign. 
 
After a successful inaugural year of the Campaign, the 2011 recommendations include:

• The National Institutes of Health should expand, better coordinate and focus federally supported research on chronic pain conditions which solely or disproportionately impact women, including chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia. 
• Using the latest scientific information on the diagnoses, treatment and prevention of these disorders, the Centers for Disease Control and Prevention, with support from and in collaboration with other federal agencies, should launch an aggressive multi-year campaign to appropriately educate health care professionals, as well as patients and the lay public.
• Federal health agencies involved in pain care, education and research should improve coordination and resource-sharing to ensure information sharing, replication of best practices, and elimination of overlap and duplication.

To read the full text of the report and all of the recommendations, visit http://www.endwomenspain.org.

“As a Campaign, we are proud to have participated in the national conversation about pain throughout the past year, and will continue to offer recommendations that  we hope will continue to be  implemented at the highest levels of government,” said Christin Veasley, Executive Director, National Vulvodynia Association, one of the four organizations leading the Campaign. “We are pleased that the IOM completed its pain study in such a timely manner and look forward to working with all levels of government to implement vital recommendations that will improve the lives of millions of pain sufferers.”

The IOM’s report on our nation’s status of pain care, education and research will be released on June 29, 2011.

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Women’s Advocates Call on the Institute of Medicine (IOM) to "Seize this Historic Opportunity"to Help Millions of Women Suffering from Neglected Chronic Pain Disorders

  Congressionally Mandated IOM Report to be Released in June, 2011  

WASHINGTON D.C. (May 10, 2010) – Today, leading women's health advocates called on the Institute of Medicine (IOM), through the release of the first Congressionally-mandated report on the state of our nation’s effort to eradicate chronic pain, to "seize this historic opportunity” to help the millions of afflicted American women suffering from prevalent, longtime neglected pain disorders.   

In a letter sent today to Dr. Phillip Pizzo, Chair of the IOM Committee on Advancing Pain Research, Care and Education, organizational leaders of the Campaign to End Chronic Pain in Women thanked the IOM for their important work and called on the special Committee to be bold in its recommendations, which are expected by the end of June.  The letter notes that up to 50 million women in America suffer from one or more of the following prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women: chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, TMJ disorders and vulvodynia, at an annual cost of up to $80 billion a year. 

They called on the IOM to recommend a concerted and coordinated effort to confront this costly problem: “The report should call on our nation’s leaders to enact a long overdue, concerted, coordinated, and serious effort to tackle this costly problem through an expanded collaborative research effort and improved clinical care.  Doing so has the potential to not only lead to an improved quality of life for millions of Americans, but will start the process of reducing wasteful and inefficient health care spending.”  

Last year Congress directed the IOM to develop recommendations on how to significantly improve the state of our nation’s pain research, medical management and educational efforts.  This report is expected to be delivered to Congress by June 30, 2011.  Since the IOM study began in November 2010, the Campaign has, on every available opportunity, submitted oral and written testimony; today’s letter outlined essential elements of the solution to this complex problem.

“Through the release of this report, the IOM has a historic opportunity to redefine how our nation confronts our chronic pain epidemic,” state the Campaign leaders.  “These recommendations hold the promise of stimulating long-overdue improvements in the quality of medical care provided to millions of chronic pain sufferers.”

For more information, please go to www.endwomenspain.org or examine the comprehensive report at http://www.endwomenspain.org/sites/default/files/CECPW_Policy%20Recommendations.pdf.

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 Campaign to End Chronic Pain in Women Commends Secretary Sebelius for Her Efforts to Advance Research on Chronic Pain Disorders Affecting Women

Secretary Sebelius Establishes NIH Committee to Study Chronic Pain

WASHINGTON D.C. (August 30, 2010) – In a recent letter, organizational leaders of the Campaign to End Chronic Pain in Women thanked Kathleen Sebelius, Secretary of the Department of Health and Human Services, for her instrumental efforts to advance scientific research on chronic pain and improve medical care for millions of Americans living with pain disorders.

The letter stressed how important it is for these efforts to address prevalent and long-time neglected pain conditions: “Since a large percentage of Americans living with chronic pain are women, it is essential that these efforts address pain conditions that solely or disproportionately affect women such as chronic fatigue syndrome, vulvodynia, endometriosis, fibromyalgia, temporomandibular disorders (TMJ) and interstitial cystitis. Equity demands no less.”

As a result of language included in our nation’s new health care reform bill, on July 15, 2010, the Inter-Agency Pain Research Coordinating Committee was established. The Secretary has since designated the National Institutes of Health (NIH) to oversee the committee. It aims to identify critical research gaps on the symptoms and causes of pain, as well as make recommendations on how to best disseminate pain care information to the American public and encourage public-private partnerships to expand collaborative cross-cutting research. The committee will also identify ways NIH and other Federal agencies can avoid unnecessary duplication of effort.

Section 4305 of the new law also directs the NIH to convene an Institute of Medicine Conference on Pain. The purpose of the conference is to develop recommendations on how to significantly improve the state of pain research, assessment, diagnosis and treatment. The report will be published by June 2011.

“We believe that these efforts hold the promise of stimulating long-overdue improvements in the care and treatment of millions who live with chronic pain,” state the Campaign leaders.

The Campaign to End Chronic Pain in Women released its groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, during the May 19th Capitol Hill launch event, held in cooperation with the Congressional Caucus on Women’s Issues. The report offers policy recommendations that could greatly improve the lives of millions of American women, while saving the government billions of dollars in wasted health care costs each year. The report can be viewed and downloaded at http://www.endwomenspain.org/sites/default/files/CECPW_Policy%20Recommendations.pdf.

 

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 The Campaign to End Chronic Pain in Women Applauds Senate Committee Action to Help Millions of Women

Appropriations Plan Calls on Key Federal Health Agencies to Improve Research and Education on Neglected Women's Chronic Pain Conditions

                          WASHINGTON, DC (August 3, 2010) – The Campaign to End Chronic Pain in Women applauds the Senate Appropriations Committee for including language in its Fiscal Year 2011 Labor, Health and Human Services, Education Appropriations Bill that directs federal agencies to advance research and promote awareness of neglected chronic pain conditions that predominantly affect women.  This action was taken in response to a groundbreaking report released by the Campaign in May, documenting that the National Institutes of Health invested only $1.33 in research for every woman affected by vulvodynia, temporomandibular disorders (TMJ), endometriosis, fibromyalgia, interstitial cystitis, and chronic fatigue syndrome.   

“This is another significant victory for our Campaign,” said Terrie Cowley, President, The TMJ Association.  “For the first time in history, Congress has moved to enact significant policy changes that will improve the quality of health care provided to millions of American women suffering from prevalent, yet neglected and poorly understood pain conditions.” 

The Senate Committee directed four federal agencies as follows: 

•  The National Institutes of Health should promptly develop and coordinate a NIH-wide research initiative to support studies aimed at identifying the causes of these disorders, with the goal of identifying potential treatments.
• The Centers for Disease Control and Prevention should undertake a study to determine the prevalence of, and risk factors shared by, these pain disorders.  Further, CDC is to develop an awareness campaign that will educate the public about the seriousness and societal costs of these conditions, as well as promote sources of reliable information on their symptoms, diagnosis, treatment, and overlapping nature.
• The Agency for Healthcare Research and Quality should investigate the direct and indirect costs associated with the failure to promptly and adequately diagnosis and treat these conditions, as well as those incurred by employers due to lost productivity, increased number of sick days and increased disability claims.
• The Health Resources and Services Administration is to develop educational programs to improve health care provider’s ability to adequately recognize, diagnose and treat these conditions, as well as reduce gender-based barriers to effective care.

“This is the most comprehensive set of actions Congress has ever taken to end the neglect and discrimination faced by the millions of American women with these chronic pain conditions,” said Kim McCleary, President & CEO, CFIDS Association of America. 

On May 19^th, the Campaign to End Chronic Pain in Women was officially launched at a Capitol Hill briefing, held in coordination with the Congressional Caucus on Women’s Issues.  The Campaign’s groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was released at the event, offers policy recommendations that could greatly improve the lives of millions of American women, while saving the government billions of dollars in wasted healthcare costs each year.  The hour-long launch event also featured the premiere of the short film, Through the Maze: Women and Pain, and the unveiling of the Campaign website www.EndWomensPain.org. 

“Education of health care professionals and the general public is essential during this time of reform, to ensure that women in this country no longer have to suffer in silence,” said Mary Lou Ballweg, President & Executive Director, Endometriosis Association. 

“With this first step, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole, by appropriately investing in research, as well as educating medical professionals and the public at large,” said Christin Veasley, Associate Director, National Vulvodynia Association.   

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Campaign Action Alert

Last month, the Overlapping Conditions Alliance successfully launched the Campaign to End Chronic Pain in Women. There is already growing Congressional interest in this effort, but we need your help today! If your U.S. Representative hears from a number of his/her constituents about this issue, he/she is likely to support this important request. Your input makes all the difference!

U.S. Representative Tammy Baldwin (D-WI) has written a letter to Rep. Frank Pallone, Jr. (D-NJ), Chairman of the Energy and Commerce Health Subcommittee, requesting that the Subcommittee convene a Congressional hearing specifically focused on chronic pain conditions that disproportionately or solely impact women including vulvodynia, temporomandibular disorders (TMJ), chronic fatigue syndrome, endometriosis, interstitial cystitis and fibromyalgia.  This is the key House panel with authority over the National Institutes of Health, U.S. Food and Drug Administration and other federal agencies that are central to improving the diagnosis, treatment and prevention of vulvodynia and other women's pain disorders.  This hearing would be a major step forward in raising awareness of the need to expand federal research on these conditions among leaders in Congress and several federal agencies.     

U.S. Representatives Lois Capps (D-CA) and Betty Sutton (D-OH) have already signed on to the letter.  The other Reps. listed below sit on this key panel, but have not yet committed to joining this important request.  If you live in one of these states, and your U.S. Representative is listed, please take just 5 minutes to email your Rep. urging him/her to sign on to this important letter.  (If you're not sure who your Rep. is, please enter your zip code in the search field on this website.)   

Thank you!  

Arizona: John Shadegg (Republican - District 03)

Arkansas: Mike Ross (Democrat - District 03)

California: Anna G. Eshoo (D-14), Jane Harman (D-36), Henry Waxman (D-30)

Colorado: Diana DeGette (D-01)

Connecticut: Christopher S. Murphy (D-05)

Florida: Kathy Castor (D-11)

Georgia:Phil Gingrey (R-11), John Barrow (D-12)

Illinois: John Shimkus (R-19), Jan Schakowsky (D-09)

Indiana: Steve Buyer (R-04)

Iowa: Bruce L. Braley (D-01)

Kentucky: Ed Whitfield (R-01)

Maryland: John P. Sarbanes (D-03)

Michigan: John D. Dingell (D-15), Mike Rogers (R-08)

Missouri: Roy Blunt (R-07)

New York: Eliot L. Engel (D-17), Anthony D. Weiner (D-09)

Ohio: Zachary T. Space (D-18)

North Carolina: Sue Wilkins Myrick (R-09)

Oklahoma: John Sullivan (R-01)

Pennsylvania: Joseph R. Pitts (R-16), Tim Murphy (R-18)

Tennessee: Bart Gordon (D-06), Marsha Blackburn (R-07)

Texas: Gene Green (D-29), Joe Barton (R-06), Ralph M. Hall (R-04), Charles A. Gonzalez (D-20), Michael C. Burgess (R-26)

Utah: Jim Matheson (D-02)

Virgin Islands: Donna M. Christensen (D-01)

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 Campaign to End Chronic Pain in Women

On Wednesday, May 19, The National Vulvodynia Association, Endometriosis Association, The TMJ Association, and CFIDS Association of America, and in cooperation with the US Congressional Caucus for Women's Issues, launched the Campaign to End Chronic Pain in Women on Capitol Hill. At the event, we:

There was standing room only, with representatives from more than 30 House and Senate offices. That afternoon,we met with staff of House and Senate leaders and key Committees. The response to the Campaign’s goals and recommendations was enthusiastically positive.

As the Campaign’s report documents, up to 50 million American women suffer from one or more chronic pain conditions, such as chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia. 

Many face neglect, dismissal and discrimination as they are shuffled from doctor to doctor, inappropriately treated, left without answers, and suffer needlessly.  It typically takes months to years and multiple consultations to obtain an accurate diagnosis.  The failure to effectively diagnose and treat these conditions adds as much as $80 billion a year in direct and indirect costs to America’s annual health care bill. 

Despite the staggering personal and financial toll, our federal research investment is severely shortchanged – averaging just $1.33 for every affected woman in 2009.  An aggressive set of reforms is called for to address this major health care problem.  In addition to saving billions in wasteful health care costs, these reforms would greatly improve the lives of, and quality of health care provided to, millions of American women. Equity demands no less. 

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Chronic Pain Conditions & the Overlapping Conditions Alliance Webinar

Recorded May 5, 2010

In this Chronic Pain Conditions Webinar, organization leaders described four of the conditions that have sidelined as many as 50 million lives and cost up to $80 billion each year. In the spotlight: chronic fatigue syndrome (CFS), endometriosis, temporomandibular (TMJ) disorders and vulvodynia, which either solely affect women, or target women at least four times more than men.

Speakers:

• CFS: Kim McCleary, President/CEO, CFIDS Association of America
• Endometriosis: Mary Lou Ballweg, President & Executive Director of the Endometriosis Association
• TMJ Disorders: Terrie Cowley, President of The TMJ Association
• Vulvodynia: Christin Veasley, Associate Director of the National Vulvodynia Association