Latest Chronic Pain Research Alliance News
US National Institutes of Health Releases First Federal Plan to Advance Research on Overlapping Pain Conditions - March 2013
Since 2009, the National Vulvodynia Association, Chronic Fatigue and Immune Deficiency Syndrome (CFIDS) Association of America, Endometriosis Association, and The TMJ Association, has led the Chronic Pain Research Alliance (CPRA)—the first and only collaborative advocacy effort in the US dedicated to advancing both disorder-specific and collective federal research efforts on eight prevalent but longtime neglected pain disorders that frequently co-occur and disproportionately affect women. They include: vulvodynia, temporomandibular disorders (aka TMJ), fibromyalgia, endometriosis, chronic fatigue syndrome, chronic headache, interstitial cystitis/painful bladder syndrome, and irritable bowel syndrome.
Recently, the Alliance worked to encourage the National Institutes of Health (NIH) to convene the first federal scientific meeting focused solely on overlapping pain conditions. A diverse group of clinical and basic science researchers came together with the goal of developing a strategic research plan to identify both unique and shared underlying disease mechanisms, as well as effective evidence-based treatment strategies. In a letter sent to NIH Director Dr. Francis Collins prior to the workshop, US Senators Bernie Sanders (I-VT), Tom Harkin (D-IA), and Sheldon Whitehouse (D-RI) expressed their concern about the number of women affected by these disorders, as well as their impact on rising healthcare costs and women’s health and quality of life. They urged the NIH to lay out clear and concrete recommendations for an aggressive, NIH-wide research agenda to accelerate scientific progress in this understudied area, and for the Trans-NIH Working Group on Chronic Overlapping Pain Conditions to swiftly implement them.
A Workshop on Chronic Overlapping Pain Conditions convened in August 2012 and was sponsored by the National Institute of Neurological Disorders and Stroke and the National Institute of Dental and Craniofacial Research, together with the NIH Pain Consortium. Meeting co-chairs were Daniel Clauw, MD, professor of medicine in the division of rheumatology at the University of Michigan, and Elizabeth Unger, MD, PhD, chief of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention. CPRA organizational leaders Terrie Cowley (TMJ Association), Kim McCleary (CFIDS Association), and NVA’s Christin Veasley participated as panelists, as did NVA and CPRA medical-scientific advisory board member Ursula Wesselmann, MD, PhD, professor of anesthesiology at the University of Alabama. Several other CPRA scientific advisory council members served as panelists, including Allen Cowley, Jr., PhD, chairman of physiology at the Medical College of Wisconsin; Karen Berkley, PhD, professor of neuroscience at Florida State University; Jon Levine, MD, PhD, director of the NIH Pain Center at the University of California, San Francisco; Richard Lipton, MD, chair of the department of neurology at Albert Einstein College of Medicine; William Maixner, PhD, DDS, director of the Center for Neurosensory Disorders at the University of North Carolina, Chapel Hill; and Suzanne Vernon, PhD, scientific director of the CFIDS Association.
The objective of the two-day meeting was to develop a forward-thinking and coordinated strategy to guide future research efforts in: developing diagnostic criteria for overlapping pain conditions; understanding risk factors associated with their development and persistence; discovering common trajectories of their onset, progression, and reversal; delineating disease mechanisms; and developing outcome measures for clinical research. It incorporated short presentations by panelists, along with extensive discussion periods. Breakout groups met separately to discuss knowledge needed, research opportunities, and training needs in several topic areas, and the meeting concluded with attendees reconvening to discuss recommendations from the breakout groups.
The panel identified six critical needs areas upon conclusion of the workshop. First, the group deemed it essential that the NIH quickly develop a case definition for chronic overlapping pain conditions, as well as standardize terminology and classification, to ensure that scientists and clinicians from different institutions share a common language and that study findings across the board are comparable and can be generalized to the wide spectrum of sufferers. Likewise, the panel recommended that basic (preclinical) and clinical research be coordinated right from the start so that what’s being studied in the laboratory setting is applicable to the clinical population (and vice versa). The group agreed that longitudinal studies, i.e., studies that follow the same group of people, sometimes up to a decade or longer, and collect information and/or biological samples several times over the course of the study, are needed to understand how overlapping pain conditions develop and persist, and to study what is different between those with one condition versus multiple pain disorders. Since sensitivity of the central nervous system (i.e., brain and spinal cord) is a consistent finding across various pain diagnoses, the panel felt that studying this phenomenon could lead to the discovery of common mechanisms that underlie these disorders. Additionally, simple and easy-to-use measures of central sensitivity could be developed and used as diagnostic markers in the clinic, and healthcare providers may be able to treat multiple conditions simultaneously with the same therapeutic intervention by targeting the mechanisms of central sensitivity.
Further, there are several large, ongoing studies that already include patients with some of these disorders, such as the NIH’s Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network and the University of North Carolina’s program project, Complex Persistent Pain Conditions: Unique and Shared Pathways of Vulnerability. The panel felt that it was very important to coordinate efforts between these studies, and for investigators to maximize the utility of resultant data and information, as well as to develop a central repository for storage and analysis of biological specimens and biomarkers. Since this area of research is relatively new, and the number and quality of scientists interested in researching these conditions is beginning to expand, the panel recommended that the NIH develop multidisciplinary training programs for both scientists who conduct their research at the NIH itself and for those from universities and institutions across the country who receive NIH grants to support their research. Finally, since medical research is conducted with the main goal of translating its findings into improved health and quality of life of those afflicted, the panel recommended that the NIH swiftly develop medical professional training programs and materials to facilitate the quick and accurate translation of findings into medical care. (Specific sub-recommendations in each of these areas can be reviewed here.)
We are hopeful that the meeting’s recommendations will be included in a 2013 federal research funding announcement, providing members of the medical-scientific community with the opportunity to apply for and receive grant support to advance the study of overlapping pain conditions.
U.S. Senate FY2013 LHHS Appropriations Report
Approved by Senate Appropriations Committee 6/14/12
NIH Office of the Director
Overlapping Chronic Pain Conditions.—The Committee recognizes
that NIH has taken seriously its repeated calls for an improved
and expanded research effort to better understand overlapping
chronic pain conditions including chronic fatigue syndrome,
endometriosis, fibromyalgia, interstitial cystitis, irritable bowel
syndrome, chronic headache, temporomandibular disorders, and
vulvodynia. The Committee is aware that initial progress is being
made toward the development and implementation of a trans-NIH
research initiative to support studies aimed at identifying etiological
and mechanistic pathways of these overlapping conditions,
with a state of the science meeting scheduled for summer 2012.
The Committee hopes that the meeting will lay out a clear and concrete
set of recommendations for an aggressive trans-NIH research
agenda. The Committee notes that the chronic pain conditions listed
above are also ideal candidates for inclusion in the Patient-Reported
Outcomes Measurement Information System, as many
chronic pain patients use multiple individualized approaches to
manage pain symptoms.
Pain.—The Committee commends NIH for its efforts so far to respond
to the IOM report ‘‘Relieving Pain in America: A Blueprint
for Transforming Prevention, Care, Education and Research.’’ For
example, NIH has designated NINDS as the lead Institute for coordinating
pain research efforts across the organization; selected a
cadre of 11 Centers of Excellence for Pain Education; begun to develop
new informational material for the public and medical professionals
on pain conditions; and instituted more frequent meetings
of the NIH Pain Consortium. The Committee strongly urges NIH
to expand on such efforts while giving appropriate attention to
overlapping chronic pain conditions that solely or disproportionately
impact women. The Committee believes that pain research would be
an appropriate subject for inclusion in the Common Fund,
as advances in this area would benefit all Institutes. Finally, the
Committee agrees with the IOM report recommendation that NIH
increase financial resources and staffing support for the Pain Consortium.
HHS Office of the Secretary
Pain Management.—A recent IOM report concluded that pain
represents a public health crisis that impacts more than 1 out of
every 3 adults, costs the American economy over $560,000,000,000
in added healthcare costs and lost productivity, and results in unnecessary
human suffering. The Committee requests that HHS develop
a comprehensive plan with specific goals, actions, and timeframes
regarding reducing barriers to pain management, educating
the public, improving professional education, and refocusing pain
research efforts at NIH. The Committee requests that this plan be
submitted to the House and Senate Committees on Appropriations
by March 2013
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
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.
Consumers, Health Professionals and Advocates Join to Hail Release of Landmark Institute of Medicine Report on Advancing Pain Research, Care and Education
View the Open Letter Here
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.
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.
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.
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.
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
“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 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.
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)
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)
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),
Utah: Jim Matheson (D-02)
Virgin Islands: Donna M. Christensen (D-01)
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:
- Released the Campaign's groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination,
- Viewed a short film entitled, Through the Maze: Women and Pain, and
- Introduced our new website, www.endwomenspain.org.
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.
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