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| Pulmonary Fibrosis Research Enhancement Act of 2008 Introduced in U.S. Congress |
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| Landmark Bill Would Create National Patient Registry, Increase Public Awareness of Deadly Lung Disease
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CPF Member Action Needed to Ensure Passage! Click Here to Learn How You Can Help
Two members of the House of Representatives who have been personally impacted by PF, Congressmen Brian Baird (WA-03) and Mike Castle (DE-at large) introduced the Pulmonary Fibrosis Research Enhancement of 2008 (H.R. 6567) on July 22, 2008. The historic bill will provide $15 million in new federal funding to create a national PF patient registry, and call on the National Institutes of Health (NIH) to expand and intensify its PF research efforts.
“Every 13 minutes, someone’s family member loses a battle with PF, yet most hear about it for the first time when they’re diagnosed; that’s simply unacceptable,” said Congressman Baird. “Together we can find the cause of, and cure for, this dreaded disease. It only takes 3 things: creativity, courage, and cash.”
Reps. Baird and Castle have been working closely with the CPF since early 2007 to author legislation that is the first of its kind to improve research and awareness of this deadly disease.
"The PF Research Enhancement Act is an important first step for the fight against PF and it is compelling to see these strong leaders come together to fight for a disease that knows no boundaries and can attack anyone," said Mishka Michon, Chief Executive Officer for the CPF. "We are inspired by their leadership in this effort. Our membership will be mobilized to contact their Congressional representatives to urgently request their support in the effort to find answers to Pulmonary Fibrosis. We look forward to the successful passage of this legislation."
"I am pleased to have worked with my colleague and the CPF to bring about this important legislation,” said Rep. Castle. “PF is an ultimately debilitating and fatal disease, and one that has taken people close to me. I remain dedicated to supporting research efforts to eradicate this disease."
While the $15 million amount is substantially less than the original legislative draft, it reflects the result of negotiations with key co-sponsors in the House of Representatives to ensure bipartisan support, and to ensure a higher probability of passage.
When passed, the Pulmonary Fibrosis Research Enhancement Act would also:
- Mandate the creation of a National PF Action Plan, in conjunction with the NIH and CDC, which would focus on strategies to improve public awareness of PF, and accelerate patient and medical education strategies. The Action Plan would be provided to the Director of the NIH within one year of the Act’s passage.
- Establish a National PF Advisory Board, which would make recommendations to the NIH and CDC concerning the structure and management of a PF patient registry. The goal of the registry would be to improve understanding of the cause and progression of PF, standards of care can be improved, research can be accelerated, and new therapies can be developed sooner
- Establish a National Summit on PF, to foster collaboration between Federal Agencies, researchers, patients and advocates to identify new approaches to research and treat PF. The Summit would be held every three years.
While not specifically appropriating PF research funds to NIH, it does lay the groundwork for such an appropriation to be authorized in the future. In the interim, the establishment of a national PF registry represents a landmark victory for the research community in their ongoing efforts to better understand and treat PF.
Baird praised the work of the CPF and its members for sending letters to Members of Congress asking them to support the PF Act, saying the letters were instrumental in obtaining the necessary co-sponsors needed to introduce the bill. For those of you who took the time to voice your opinion, THANK YOU!
Since 2002, the CPF has been leading a national advocacy effort toward the NIH & CDC to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder. This has included a close collaboration with the late Congressman Charlie Norwood, who lost his battle with IPF in 2007. The CPF worked closely with Rep. Norwood to secure passage of H.R. 182 in 2007, which was the first-ever Congressional recognition of the need for increased research funding and improved public awareness of PF in the United States. This resolution laid the groundwork for the PF Research Enhancement Act to become a reality.
In addition to Rep. Baird’s lead sponsorship and Rep. Castle’s co-sponsorship, Cosponsors of the Pulmonary Fibrosis Research Enhancement Act include Reps. Nathan Deal (GA-9), Jim Gerlach (PA-6), Steve LaTourette (OH-14), and Mark Kirk (IL--10), Bill Young (FL-10), Jane Harman (CA-36) and Jackie Speier (CA-12).
CPF Member Action Needed to Ensure Passage! Click Here to Learn How You Can Help
The CPF is extremely excited about the introduction of the Pulmonary Fibrosis Research Enhancement Act, announced on the cover of this newsletter. Congressman Baird’s office specifically thanked the CPF for the letters that were written to Members in support of this legislation which raised awareness of the Act and led to new cosponsors.
The efforts of every CPF member are critical to the success of this Bill! Help us make history by continuing to advocate for all PF patients by:
- Contact your representative and urge him or her to support this critical piece of legislation by becoming a co-sponsor today!
- Click here to sign up as an advocate! – it will then take one easy click to send a letter to your representatives in Washington!
- Schedule a meeting with your Congressperson during at their local district office to discuss the bill – a face-to-face meeting with a constituent has the most impact – to share your story and request their co-sponsorship
- Ask all of your friends to please take action – every contact moves us closer to success – use the CPF’s new online advocacy program to contact everyone you know
To learn more about the work of the CPF in Washington, please click here or call us at (888) 222-8541!
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