Campaign to End Chronic Pain in Women

From 2010 to 2012, the Chronic Pain Research Alliance (formerly named the Overlapping Conditions Alliance) received funding to conduct the Campaign to End Chronic Pain in Women. The Campaign was jointly led by organizational leaders of the CFIDS Association of America (now named the Solve ME/CFS Initiative), Endometriosis Association, National Vulvodynia Association and The TMJ Association.

The Campaign’s major aim was to improve the health and well-being of women living with one or more chronic pain disorders that solely or disproportionately affect women, including myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, temporomandibular disorders, vulvodynia, endometriosis and interstitial cystitis/painful bladder syndrome. As many as 50 million American women live with one or more of these conditions, and for the majority, our health care system offers frustratingly little help. Because the U.S. government and private sector have shortchanged research on these disorders, they are all poorly understood. Health care providers receive inadequate training on their diagnosis and treatment, and effective, evidence-based treatments are lacking. Additionally, evidence suggests a discriminatory pattern in the medical care provided to women with chronic pain.   

During the Campaign, we were able to significantly increase awareness of these issues among key stakeholder groups, including policy makers, representatives of federal health research agencies and industry, clinicians, scientists, media professionals and the public. This work continues through the efforts of the Chronic Pain Research Alliance.

We welcome you to:

Major Milestones During Campaign (2010-2012)

  • 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, DC – 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.”

  • Womens Health Advocates Praise Scheduling of Historic Senate Hearing

    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.”

  • 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

    WASHINGTON, DC – June 29, 2011 – A broad group of consumers, health professionals and advocates today – including members of the Campaign
    to End Chronic Pain in Women – joined to release a statement praising the Institute of Medicine’s Relieving Pain in America: Blueprint for Transforming Prevention, Treatment and Research, tackling a major health problem that impacts 116 million Americans and costs over $500 billion a
    year.
     
    “As organizations representing millions of Americans who suffer from chronic pain, of health professionals who care for these Americans,
    and of researchers and educators working to improve the care and treatment options available to these Americans, we are united in our
    enthusiasm for the IOM’s attention to this issue and by the release of this landmark report that identifies pain as major public health problem,” the group said.
     
    “We hope that this landmark report sounds the siren call for greater attention to pain issues by both public and private sector policymakers and by the nation as a whole. We hope the recommendations of the report lay a clear path toward much needed improvements in pain
    research, care, education and treatment. “
     
    The Congressionally-mandated IOM report, Relieving Pain in America: Blueprint for Transforming Prevention, Treatment and Research, is the most authoritative review to date of how America deals with pain, and how it can improve pain care, research and education.  The report and
    its recommendations have the potential benefit of substantially raising the profile of chronic pain issues, particularly those that affect women, among the public, health professionals and policymakers.
     
    “This report is extremely significant to the nearly 50 million American women who live with one or more neglected chronic pain disorders,” said Christin Veasley, Executive Director, National
    Vulvodynia Association, one of the four organizations leading the Campaign to End Chronic Pain in Women. “Women bear the brunt of
    inadequate care and suffering experienced by chronic pain sufferers, and we are pleased the Department of Health and Human Services has enlisted the Institute of Medicine in examining pain as a public health problem.”
     
    The Campaign to End Chronic Pain in Women recently released its 2011 health care policy recommendations, which include research studies that expand upon the IOM’s work.
     
    The Institute of Medicine’s report can be found on its Website.
     
    About The Campaign to End Chronic Pain in Women: 
    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.
     
     
    Paula Alford speaks about her battle with endometriosis, osteoporosis and fibromyalgia.
     
     
    Christin Veasley, Executive Director, National Vulvodynia Association.
     

    Speakers (L to R): Dr. Perry Fine, Professor of Anethesiology, Pain Research Center, University of Utah School of Medicine; Paula Alford, chronic pain sufferer; Christin Veasley, Executive Director, National Vulvodynia Association; Judy Foreman, nationally syndicated health columnist; Christine Zambricki, Deputy Executive Director, American Association of Nurse Anethesists; and Malene Davis, President and CEO, Capital Caring.

  • Women’s Advocates Confront Silent and Costly Epidemic Of Chronic Pain

    Updated Report Identifies Cost Saving Solutions

    WASHINGTON, DC – 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.

“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. 

About The Campaign to End Chronic Pain in Women:
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.

  • Public Testimony

    Chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia are just six comorbid conditions of a cluster of poorly understood and neglected pain conditions. These six affect as many as 50 million women and cost as much as 80 billion dollars annually in direct and indirect costs – much wasted because of the lack of diagnostics, safe and effective treatments
    and scientific understanding of these conditions.

    Agencies within the Department of Health and Human Services should see to it that research on these conditions be significantly expanded
    and made more efficient and effective through collaborative interdisciplinary research across these pain conditions.

    They should also launch an aggressive multi-year awareness campaign which includes the most current scientific information on the diagnosis,
    treatment and prevention of these disorders to educate health care professionals, patients and the American public.

    Without scientific discovery there will be no change in the hit and miss treatment patterns that exist today. Without professional
    education, women in pain will continue to be discriminated against.Without awareness, the stigma will go on.

    Tens of millions of Americans are looking to you to lay out a bold set of recommendations that will ultimately lead to better care and we need a concerted and coordinated effort to address their needs. Equity demands no less.

    You have a historic opportunity to send a strong message that this country takes chronic pain conditions that solely or disproportionately
    impact women seriously and recognizes the tremendous toll that they take on women, their families and our nation. You can redefine how our
    nation confronts what is an epidemic of chronic pain.

  • Campaign to End Chronic Pain in Women Applauds the Historic Effort to Improve Pain Research, Care and Education

    Press Release: The Campaign to End Chronic Pain in Women

    WASHINGTON D.C. (November 22, 2010) –  The organizational leaders of the Campaign to End Chronic Pain in Women applaud the National
    Institutes of Health (NIH) and Institute of Medicine (IOM) for beginning a historic review of the state of pain research, care and education in America.  In May the Campaign released a landmark study which found that up to 50 million American women suffer from one or more neglected
    chronic pain conditions which solely or disproportionately impact women (chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial
    cystitis, temporomandibular disorders and vulvodynia).  The report found that much of the up to $80 billion annual cost of these co-morbid
    conditions could be saved through better research and care.

    The IOM study was mandated as part of the recently passed health care reform law and is being funded by the NIH.  In addition to reviewing
    the adequacy of U.S. efforts, the IOM is to develop recommendations on how to significantly improve the state of pain research, assessment,
    diagnosis and treatment.  The IOM panel’s final report is expected to be presented to Congress by June 2011 and its recommendations are expected
    to have a major impact on future U.S. policy towards pain research and care.

    Terrie Cowley, President of the TMJ Association, will be presenting to the IOM panel on behalf of the Campaign and will urge that the IOM effort give appropriate attention to co-morbid chronic pain conditions that exclusively or disproportionately impact women.  “Tens of millions of American women are looking to you to lay out a bold set of recommendations that will ultimately lead to better care,” stated Cowley.  “You have an historic opportunity to send a strong message that this country takes chronic pain conditions that solely or disproportionately impact women seriously and recognizes the tremendous toll that they take on women, their families and our nation.”  

    In addition to presenting the Campaign’s key report findings, Ms. Cowley put forth the following essential components of an effective plan
    to address these often co-morbid or overlapping pain conditions:

    • HHS-funded research on these conditions needs to be significantly increased, and taxpayer investments should be made more efficient and effective by placing greater priority on collaborative interdisciplinary
      research across the conditions, as well as across HHS agencies and NIH Institutes and Offices.

    • HHS agencies need to aggressively expand, in a multidisciplinary fashion, the scientific field dedicated to studying chronic pain
      conditions.

    • HHS should launch an aggressive multi-year awareness campaign, which includes the most current scientific information on the diagnosis, treatment and prevention of these disorders, to educate health care
      professionals, patients and the American public. 

    “You can redefine how our nation confronts what is an epidemic of chronic pain conditions,” stated Cowley.  “We need a concerted and coordinated effort to address the needs of millions of American women,” stated Cowley.  “Equity demands no less.”

    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 volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia
    Association, and The TMJ Association.

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

    Press Release: The Campaign to End Chronic Pain in Women

    WASHINGTON D.C. (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 19th, 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.

    “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.

    Campaign Centers on Women’s Pain

  • South Bend Tribune, June 8, 2010 The Campaign to End Chronic Pain in Women kicked off May 19 with an event on Capitol Hill, a new report about women’s pain and the launch of a website and a video called “Through the Maze”, the Washington Post reports.
  • Campaign to End Chronic Pain in Women Launched: Endometriosis Association Part of Fight to End Discrimination Against Women in US Healthcare

    Endometriosis Association’s Newsletter, September 2010

    The Endometriosis Association joined the three other member organizations of the Overlapping Conditions Alliance at the Capitol in Washington, D.C. on May 19th to launch the Campaign to End Chronic Pain in Women. Thirty-five representatives from more than thirty congressional offices attended the standing-room only briefing. A senior
    healthcare staffer from the office of Tammy Baldwin (D-WI), a leader of the Congressional Caucus for Women’s Issues, delivered Rep. Baldwin’s opening remarks. 

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.”

About the Chronic Pain Research Alliance and Campaign to End Chronic Pain in Women:
The Chronic Pain Research Alliance (CPRA), a collaborative effort led by the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association and The TMJ Association, is dedicated to
alleviating the significant human suffering caused by prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women, by advocating for, and
supporting innovative collaborative scientific research on these disorders. These conditions, which affect at least 50 million American women at an annual cost of $80 billion, include vulvodynia, temporomandibular joint and muscle disorders, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, chronic headache and chronic fatigue syndrome. The CPRA also leads the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end discrimination and improve care for women suffering from these chronic pain conditions. For additional information, please visit
www.chronicpainresearch.org.