Like you and your family, we believe that not enough research dollars are being used to find treatments and a cure for Pulmonary Fibrosis (PF). As death rates continue to climb, we still have no therapies to save lives. We need your help to change this! Send a letter to your member of Congress and Senator NOW asking them to sign onto a letter encouraging NIH to pay more attention to PF: click here. If you'd rather make a phone call, call the Capitol switchboard at 202-224-3121.
As you may know, much of the research funding spent on PF and other diseases comes from tax dollars through the National Institutes of Health (NIH), which is part of the United States government. The decision-makers at NIH can be influenced by patients, patient groups and members of Congress to put more funding into a particular disease. This has been done successfully in the past, as examples, by breast cancer and AIDS advocates.
Less than .08% of the NIH budget is going towards PF research, an extremely low number considering how many Americans suffer from PF and that there is no effective therapy.
One way to help find answers and treatments faster in PF is to ask NIH to use more of its existing budget, some of which is discretionary and the NIH Director decides how to spend it. We know there are limited dollars and many diseases - we are only asking that PF not remain underfunded given its prevalence.
Our friends in Congress, Sen. Christopher Coons (D-DE) and Rep. Erik Paulsen (R-MN) have spearheaded an effort to get the NIH Director, Dr. Francis Collins' attention and to ask him to spend more money on PF.
These members of Congress have circulated a "dear colleague" letter asking other members of Congress to sign onto a letter they have written and will be sending to Dr. Collins asking him to do more to fight PF (Further down in this letter, please see their very strong letter).
What we need YOU to do NOW:
Please contact your member of Congress and your Senator(s) today asking them to co-sign this important letter. We have made it easy for you - just click here to send your letter. It is quick and simple!
If you decide to call, make sure your members' offices have this information to sign onto Sen. Coons' and Sen. Paulsen's letter: For more information or to cosign, please contact Rachel Bird Niebling in Senator Coons’ office at rachel_bird@coons.senate.govor Matt Gallivan in Representative Paulsen’s office at matt.gallivan@mail.house.gov.
Thank you!
The Coalition for Pulmonary Fibrosis
Draft of Letter to be Sent to NIH Director, Dr. Francis Collins:
Dear Director Collins:
We are writing to you today to express our support for Pulmonary Fibrosis (PF) research at the National Institutes of Health (NIH) and to learn more about what investments you are making to better understand this devastating disease. We are keenly aware that during this time of limited federal resources, there is a critical need to use taxpayer dollars in the most efficient manner possible, including in the allocation of resources within the NIH. We also believe that funding for PF-related activities at the NIH is a worthwhile investment that will significantly help speed the discovery of effective treatments, reduce costs, and improve the lives of PF patients in the future.
PF afflicts as many as 200,000 Americans, with 50,000 new cases diagnosed each year. The median survival rate for someone diagnosed with PF is just 2.3 years, and – similar to breast cancer – PF causes at least 40,000 deaths in our country each year. This means that PF takes one American life every 13 minutes. The estimated treatment costs for individuals with PF run between $4.3 to $6.7 billion annually, and unfortunately, the only real treatment for PF is a lung transplant, which is tremendously expensive and carries with it substantial risks. In 2009 there were only 557 lung transplants conducted for PF patients nationwide, meaning a PF sufferer has a quarter of one percent chance of even getting a transplant.
Even though individuals with PF face an astonishingly high morbidity and mortality rate and there are no effective treatments, only a small fraction of the NIH budget is allocated to PF research. On average, over the period from FY2006-2011, it is our understanding that only about .08% of the NIH budget has gone to PF research. We and our constituents are concerned by the disparity between the funding dedicated to PF research and the impact of this devastating disease.
We would welcome your insights into why this disparity exists, and we respectfully ask you to share a detailed update on what current and future research and possible funding enhancements you are undertaking on PF. Thank you for your attention to this matter, and we will look forward to your reply.
Sincerely,
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343 Culver City, CA 90232 (888) 222-8541 info@coalitionforpf.org |
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