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Advocacy
Over the past 10 years, the NFA has been involved in various efforts designed to promote grassroots advocacy efforts. Through our annual International Fibromyalgia Awareness Day Campaign and our proclamation program, we have mobilized groups around the world to advocate for recognition of FM at local and national levels. The NFA has participated in rallies in Sacramento, California, and in Washington DC, geared towards increasing awareness among policy-makers. Additionally, the NFA continues to collaborate with other national organizations, like the National Pain Foundation and the CFIDS Association of America, to get the word out about advocacy efforts and legislative issues impacting the FM community. We also encourage participation in letter-writing campaigns designed to influence the policy-making process at all levels of government.
California Efforts:
2008 California Legislation Day Update and Call to Action for California FM Community
On Monday, March 10, 2008, the National Fibromyalgia Association held its first statewide fibromyalgia (FM) legislation day at the capital in Sacramento. We had a great turnout for a first-time event and were extremely pleased with the results.
The day started with a press conference in the Governor’s Press Room where four legislators commented on the development of two resolutions. Theses resolutions benefit Californians with fibromyalgia and support the NFA’s efforts to increase research funding at a federal level. Additionally, the legislators took part in the “Fibromyalgia Pledge to Care,” along with the NFA and FM Legislation Day volunteers.
The volunteers then broke into 15 teams of 2-4 individuals and visited the offices of the other legislators to create awareness and seek their support for the resolutions, which are currently in the review process.
About the Resolutions
- Senator Gloria Negrete McLeod, chair of the California Legislative Women’s Caucus, and Assembly Member Sharon Runner co-sponsored a resolution advocating for improved treatments, expanded research at the National Institutes of Health, comprehensive health insurance coverage and increased awareness of fibromyalgia, especially in the U.S. Congress, and specifically, in the Congressional Caucus on Women’s Issues.
- Assembly Member Mervyn Dymally authored ACR 112 (introduced by Assembly Member Nell Soto), which establishes the Legislative Task Force on Fibromyalgia. The resolution calls on members of the State Assembly, Senate and the National Fibromyalgia Association to appoint a 15-member task force.
In addition to seeking support for the two concurrent resolutions, the teams presented the legislators with a packet of information and a copy of the NFA’s Pledge to Care. During the visits, the volunteers were able to secure verbal support for one or both of the resolutions from 24 legislators and several took and signed the Pledge to Care.
For more information on recent activity and to participate in the process (click here).
For additional questions, please contact NFA Senior Director of Government and Community Relations Rae Marie Gleason by email: rgleason@fmaware.org.
 Since December 2006, the NFA has been involved in the creation and development of the California Chronic Care Coalition (CCCC), an alliance of non-profit and health-care provider organizations united to improve the health of Californians. Our mission is to improve the health care system so that all Californians with chronic conditions can access appropriate quality health care. CCCC encourages prevention, including effective diagnosis and management of chronic disease, within California healthcare policies, and is playing a major role in the California government’s current health care reform process. Click here to find out more.
Primary Focus Areas:
- Prevention care coverage for chronic conditions
- Primary (immunizations, well care, etc.)
- Secondary Diagnostic Testing & Screening
- Tertiary: Medication/ Imaging Testing Chronic Pain Management
- Cost-Effectiveness of Prevention
- Importance of addressing co-morbidities
- Need for all Californians to have access to health care insurance
How Californians Can Get Involved:
- Be willing to share your experience with health care system in CA (if asked).
- Be prepared to discuss your:
- Lack of insurance coverage
- Inability to get medication
- Out-of-pocket expenses
- Inadequate health care
- Doctors refusing treatment
- Be willing to Contact your State Representative (as necessary)
NFA Advocates for the Following Priorities:
- Increased funding for research aimed at:
- Determining the mechanisms causing FM
- Prevalence studies to determine the magnitude of people suffering with FM
- Discovering new treatment options
- Access to comprehensive health care and treatment options
- Recognition of fibromyalgia as a legitimate chronic pain condition deserving of the similar preventive measures and treatment protocol developed for other chronic conditions, such as diabetes
- Increased education of health-care professionals in medical school and required continuing medical education for licensed providers
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