I’ve got so much to blog about, but right now work is very busy and so is the HPS Network. So, I’ve spent the evening working on things for work, and some freelance things, and returning a few HPS-related e-mails. I’ve run out of time to blog. But, in lieu of my personal musings, I thought I’d share this press release from IPF Awareness Week.
We share a lot of the same goals as the IPF community. While the pulmonary fibrosis of HPS is not idiopathic (idiopathic only means doctors aren’t sure what causes the problem, and we know the pulmonary fibrosis of HPS is caused by a gene error – we even know the gene) – we share the same general health concerns, and the same general policy concerns with those that have IPF. This press release mentions proposed legislation to do away with the mandatory waiting period for Medicare coverage for those with serious health problems. I intend to blog more about this later – doing a little fact checking on the subject as soon as I have a chance.
At any rate, bravo to the Coalition for Pulmonary Fibrosis for all their work pushing for research dollars that will benefit us all.
CPF Concludes Successful National IPF Awareness Week in Washington
Contingent of IPF patients, family members and healthcare professionals come to Capitol Hill to represent those fighting deadly, incurable lung disease
San Jose, Calif. (Oct. 9, 2006) – The Coalition for Pulmonary Fibrosis (CPF) today announced results from its fourth annual, National IPF Awareness Week (Sept. 25 – Oct. 1). For the fourth consecutive year a delegation of CPF representatives from across the country helped mark National IPF Awareness Week by traveling to Washington, D.C. to educate Members of Congress about idiopathic pulmonary fibrosis (IPF), to encourage support for important IPF-related legislation, and to educate Members on the need for improved research funding.
“This was our most productive awareness week to date with nearly 20 patients and patient advocates descending on Capitol Hill to meet with lawmakers and to deliver a singular message that more needs to be done to treat and cure IPF,” said Mark Shreve, chief executive officer of the CPF. “There is not a more effective way to educate Members of Congress than by having them hear directly from their constituents who are impacted by their decisions. We carried with us the voices of more than 128,000 people across this country currently fighting IPF.”
The CPF met with nearly 50 staff and leadership of key Congressional committees responsible for authorizing the National Institutes of Health (NIH), and with oversight of Medicare and Medicaid to provide perspective on legislation important to its 11,000 members across the country. Meetings with Members and staff of the U.S. House Energy and Commerce Subcommittee on Health included Rep. Gene Green (TX), Rep. Mike Rogers (MI), Rep. Mary Bono (CA), and Rep. Ralph M. Hall (TX). Meetings with the U.S. Senate Health, Labor, and Pensions Committee included Sen. Mike Enzi (WY), chairman, Sen. Richard Burr (NC), Sen. Hillary Rodham Clinton (NY), and Sen. Orrin Hatch (UT).
CPF representatives encouraged lawmakers to support specific IPF-related legislation currently before Congress that can help improve quality of life for patients, including; The Ending the Medicare Disability Waiting Period Act, which would waive the two-year waiting period for terminally ill patients to receive important benefits, and the Home Oxygen Patient Protection Act, which would protect patients’ interests with respect to oxygen use and equipment management.
The meetings were effective in continuing to establish the CPF and its members as the definitive advocacy organization and resource for IPF information, and Congress welcomed the team and its message.
"I am full of energy for this cause," said Bill Rhodes, CPF member and IPF patient from Penngrove, Calif. Rhodes reflected on the opportunity of serving as a National IPF Awareness Week delegate on Capitol Hill in Washington, D.C. in September 2006. "I feel as if I have just planted several small, young trees on Capitol Hill, and over the next many years they will grow into a nice big canopy of protection, comfort and love for the generations of IPF patients and their families to come."
The CPF group also met with leaders of the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI) to learn about their efforts in IPF-specific research and new research efforts and clinical trials underway to find treatments and a cure for the disease. The NIH plays a critical role in addressing health problems and provides primary research funding for many diseases, including IPF. The CPF will be assisting the NIH in recruiting patients to participate in these trials, which are slated to begin enrollment in January 2007, according to the Agency.
On Sept. 26 the U.S. House of Representatives passed a bill that would reauthorize the NIH for the first time in 13 years and increase the program’s total budget by five percent annually through 2009. The IPF community is further served by the NIH through this legislation, as reports language offered by the House Energy and Commerce Committee included specific references to IPF. The reports language in Section 5 of the bill states “…the Committee is interested in learning more about the research activities with respect to diseases such as…[idiopathic pulmonary fibrosis]…”
This language serves as an important reference for implementing the NIH legislation, which now awaits Senate approval. The IPF-specific reference is supported by the CPF’s advocacy efforts and could bring greater attention to the need to advance IPF-related research.
For additional information about National IPF Awareness Week 2006 activities or CPF’s Campaign ACT program, visit www.coalitionforpf.org.
We share a lot of the same goals as the IPF community. While the pulmonary fibrosis of HPS is not idiopathic (idiopathic only means doctors aren’t sure what causes the problem, and we know the pulmonary fibrosis of HPS is caused by a gene error – we even know the gene) – we share the same general health concerns, and the same general policy concerns with those that have IPF. This press release mentions proposed legislation to do away with the mandatory waiting period for Medicare coverage for those with serious health problems. I intend to blog more about this later – doing a little fact checking on the subject as soon as I have a chance.
At any rate, bravo to the Coalition for Pulmonary Fibrosis for all their work pushing for research dollars that will benefit us all.
CPF Concludes Successful National IPF Awareness Week in Washington
Contingent of IPF patients, family members and healthcare professionals come to Capitol Hill to represent those fighting deadly, incurable lung disease
San Jose, Calif. (Oct. 9, 2006) – The Coalition for Pulmonary Fibrosis (CPF) today announced results from its fourth annual, National IPF Awareness Week (Sept. 25 – Oct. 1). For the fourth consecutive year a delegation of CPF representatives from across the country helped mark National IPF Awareness Week by traveling to Washington, D.C. to educate Members of Congress about idiopathic pulmonary fibrosis (IPF), to encourage support for important IPF-related legislation, and to educate Members on the need for improved research funding.
“This was our most productive awareness week to date with nearly 20 patients and patient advocates descending on Capitol Hill to meet with lawmakers and to deliver a singular message that more needs to be done to treat and cure IPF,” said Mark Shreve, chief executive officer of the CPF. “There is not a more effective way to educate Members of Congress than by having them hear directly from their constituents who are impacted by their decisions. We carried with us the voices of more than 128,000 people across this country currently fighting IPF.”
The CPF met with nearly 50 staff and leadership of key Congressional committees responsible for authorizing the National Institutes of Health (NIH), and with oversight of Medicare and Medicaid to provide perspective on legislation important to its 11,000 members across the country. Meetings with Members and staff of the U.S. House Energy and Commerce Subcommittee on Health included Rep. Gene Green (TX), Rep. Mike Rogers (MI), Rep. Mary Bono (CA), and Rep. Ralph M. Hall (TX). Meetings with the U.S. Senate Health, Labor, and Pensions Committee included Sen. Mike Enzi (WY), chairman, Sen. Richard Burr (NC), Sen. Hillary Rodham Clinton (NY), and Sen. Orrin Hatch (UT).
CPF representatives encouraged lawmakers to support specific IPF-related legislation currently before Congress that can help improve quality of life for patients, including; The Ending the Medicare Disability Waiting Period Act, which would waive the two-year waiting period for terminally ill patients to receive important benefits, and the Home Oxygen Patient Protection Act, which would protect patients’ interests with respect to oxygen use and equipment management.
The meetings were effective in continuing to establish the CPF and its members as the definitive advocacy organization and resource for IPF information, and Congress welcomed the team and its message.
"I am full of energy for this cause," said Bill Rhodes, CPF member and IPF patient from Penngrove, Calif. Rhodes reflected on the opportunity of serving as a National IPF Awareness Week delegate on Capitol Hill in Washington, D.C. in September 2006. "I feel as if I have just planted several small, young trees on Capitol Hill, and over the next many years they will grow into a nice big canopy of protection, comfort and love for the generations of IPF patients and their families to come."
The CPF group also met with leaders of the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI) to learn about their efforts in IPF-specific research and new research efforts and clinical trials underway to find treatments and a cure for the disease. The NIH plays a critical role in addressing health problems and provides primary research funding for many diseases, including IPF. The CPF will be assisting the NIH in recruiting patients to participate in these trials, which are slated to begin enrollment in January 2007, according to the Agency.
On Sept. 26 the U.S. House of Representatives passed a bill that would reauthorize the NIH for the first time in 13 years and increase the program’s total budget by five percent annually through 2009. The IPF community is further served by the NIH through this legislation, as reports language offered by the House Energy and Commerce Committee included specific references to IPF. The reports language in Section 5 of the bill states “…the Committee is interested in learning more about the research activities with respect to diseases such as…[idiopathic pulmonary fibrosis]…”
This language serves as an important reference for implementing the NIH legislation, which now awaits Senate approval. The IPF-specific reference is supported by the CPF’s advocacy efforts and could bring greater attention to the need to advance IPF-related research.
For additional information about National IPF Awareness Week 2006 activities or CPF’s Campaign ACT program, visit www.coalitionforpf.org.
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