Launch event and Capitol Hill meetings reinforce human and financial toll of chronic pain
Capitol Visitor Center
The following press release about the launch of the Campaign to End Chronic Pain in Women was sent to more than 1,000 media outlets across the nation yesterday after an event on Capitol Hill that attracted congressional staff from 35 offices, leaders of women's organizations and health organizations and reporters. The event was held in cooperation with the Congressional Caucus on Women's Issues at the Capitol Visitor Center.
After the event, leaders of the CFIDS Association of America (Kim McCleary), the Endometriosis Association (Mary Lou Ballweg and Carol Drury), the TMJ Association (Terrie Cowley and Deanne Cleare) and the National Vulvodynia Association (Christin Veasley) met with staff in the offices of the Senate Majority Leader (Senator Harry Reid), the Speaker of the House (Rep. Nancy Pelosi), chairman of the Senate Health, Education, Labor and Pensions and Appropriations Committees (Sen. Tom Harkin), chairman of the Senate Aging Committee (Sen. Herb Kohl), chairman of the House Energy and Commerce Committee (Rep. Henry Waxman) and chairman of the Health subcommittee of the House Energy and Commerce Committee (Rep. Frank Pallone) as well as other House authorizers and appropriators. They discussed the policy recommendations in the report and gained important feedback about ways in which the campaign goals can be incorporated into new programs being implemented under the Patient Protection and Affordable Health Care Act.
Watch for more news about the Campaign to End Chronic Pain in Women in CFIDSLink, on our website www.cfids.org and our Facebook page www.facebook.com/CFIDSAssn.
For Immediate Release
May 19, 2010
The Overlapping Conditions Alliance Launches the "Campaign to End Chronic Pain in Women" on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare
Campaign Releases Comprehensive Report & Groundbreaking Campaign Film on Chronic Pain in Women
WASHINGTON D.C. (May 19, 2010) - The Overlapping Conditions Alliance today launched the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign aims to improve the quality of women's lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women living with chronic pain under the current U.S. healthcare system.
Standing room only!
A representative from the office of Rep. Tammy Baldwin (D-WI), a leader of the Congressional Caucus for Women's Issues, provided opening remarks. Congressional staffers, patients, and other Washington D.C. area advocates for women's health issues were also in attendance.
"While healthcare reform legislation took an important first step to address chronic pain issues, we have a lot of work ahead of us," said a representative for Caucus Co-Chair Rep. Tammy Baldwin (D-WI). "I look forward to working closely with the Campaign to End Chronic Pain in Women to teach our healthcare system how to confront chronic pain and ensure that no woman suffers needlessly."
At today's press conference the Campaign released a groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which offers policy recommendations that could save 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. Following the event, Campaign leaders are scheduled to meet with targeted congressional offices to discuss key report findings and policy recommendations.
"This campaign is about the pattern of neglect, dismissal and discrimination of women's chronic pain conditions, which serves as the latest example of one of the many gaps in the U.S. healthcare system that deepen human suffering," said Kim McCleary, President & CEO, CFIDS Association of America.
Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was commissioned by the Campaign, examines the current lack of effective treatments and research funding for chronic pain conditions that predominantly affect women, and how improvements in research, education and access to effective treatments could contribute to improved quality of care and cost control.
"The costs to patients go beyond dollars," said Terrie Cowley, President, TMJ Association. "Patients can lose their dreams and hopes of careers, of a family, of a quality life and even life itself. This is why it is so important that cost effective investments in research be made, and that a campaign is created to educate healthcare professionals and promote public awareness of these conditions."
According to the Campaign report, in 2009 the National Institutes of Health invested only $65 million in research into the six chronic pain conditions highlighted in the report - chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia - just two-tenths of one percent of its total budget. That is an average of just $1.33 for every affected woman and represents less than one-tenth of one percent of the annual estimated cost of these conditions.
"Women in our society are oftentimes raised with the notion that it's normal to suffer," said Mary Lou Ballweg, President & Executive Director, Endometriosis Association. "Education of healthcare 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."
The Campaign includes volunteer leaders from four non-profit patient advocacy organizations, including The CFIDS Association of America, The Endometriosis Association, The National Vulvodynia Association, and The TMJ Association.
"Chronic pain doesn't just affect the sufferer - it affects each and every one of us and every part of our society," said Christin Veasley, Associate Director, National Vulvodynia Association. "By appropriately investing in research, educating medical professionals and the public at large, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole."
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 made up of volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. Pfizer helped offset the costs of campaign materials. For more information, visit www.endwomenspain.org.