Thursday, May 20, 2010

Overlapping Conditions Alliance to fight discrimination

May 20, 2010

Launch event and Capitol Hill meetings reinforce human and financial toll of chronic pain

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 and our Facebook page

PRESS RELEASE                               
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.

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

"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 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 to offset the costs of campaign materials. For more
information, visit


Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.

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