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Presentation on theme: "Www.coalitionforpf.org www.coalitionforpf.org (888) 222-8541."— Presentation transcript:

1 (888)

2 We’re here for You! 11,000 patient members and growing Creating More than 40 Patient Support Groups Providing resources, referrals, information for more than 30,000 patients and families Giving Free brochures to doctors and patients Funding research Raising Money for patient support and research Advocating in Washington

3 CPF Goals & Objectives (888) Accelerate research efforts to find new treatments, or a cure, for IPFAccelerate research efforts to find new treatments, or a cure, for IPF Increase public awareness of PFIncrease public awareness of PF Educating, supporting, and advocating for the community of patients and families fighting IPF and medical professionalsEducating, supporting, and advocating for the community of patients and families fighting IPF and medical professionals Improve detection, diagnosis and treatment of PF in the medical communityImprove detection, diagnosis and treatment of PF in the medical community

4 Nonprofit Partners Nationwide (888) The American Thoracic SocietyThe American Thoracic Society The Anne Harroun Landgraf FoundationThe Anne Harroun Landgraf Foundation Mary D. Harris Memorial FoundationMary D. Harris Memorial Foundation The Pulmonary PaperThe Pulmonary Paper Caring Voice CoalitionCaring Voice Coalition AARDA/NCAPGAARDA/NCAPG Second Wind Lung Transplant AssociationSecond Wind Lung Transplant Association The Fred J. Brotherton Charitable FoundationThe Fred J. Brotherton Charitable Foundation Pulmonary Fibrosis Association ( )Pulmonary Fibrosis Association ( ) American Lung Association ChaptersAmerican Lung Association Chapters 30+ medical and research institutions nationwide30+ medical and research institutions nationwide “Everything we do is only possible through the generous support of the community we serve.” Marvin Schwarz, MD - CPF Chairman

5 They say IPF is Rare… But the Yellow-tailed Woolly Monkey is really rare – with 250 of them in the Peruvian Andes.

6 IPF More Common than Ever The population of Columbia, SC is nearly the same as the number affected by IPF… Still considered a rare disease (disease that affects less an 200,000 people) 128,000 cases 48,000 new cases each year Prevalence and incidence on the rise

7 What is Awareness of IPF? (888) Recent CPF-funded survey of 2,000 American adultsRecent CPF-funded survey of 2,000 American adults While 96% of public has heard of Asthma, 88% CF and 85% Lou Gehrig’s disease, only 29% had heard of IPF & roughly 20% recognized it by name- only, and had no knowledge of the diseaseWhile 96% of public has heard of Asthma, 88% CF and 85% Lou Gehrig’s disease, only 29% had heard of IPF & roughly 20% recognized it by name- only, and had no knowledge of the disease 6% of respondents knew someone with IPF (family, friend)6% of respondents knew someone with IPF (family, friend) Given basic information about incidence and prevalence of IPF when compared to other rare diseases (CF, ALS), 85% agreed that IPF should receive more federal funding for researchGiven basic information about incidence and prevalence of IPF when compared to other rare diseases (CF, ALS), 85% agreed that IPF should receive more federal funding for research

8 My Family and IPF Five Siblings Died in 10 Years

9 Services in High Demand (888) Free Resource Kit for IPF patients and families, including all educational materials (Let’s Talk About IPF, Lung Transplantation, Pulm Rehab, Clinical Trials…) Comprehensive Website for patients and medical professionals Support Groups Nationwide “Living With IPF” Seminars Patient mentoring, counseling, program referrals, transplant education & support

10 Professional Education (888) Basic Research Questionnaire (2003-Present)Basic Research Questionnaire (2003-Present) -accepted for publication in Respiratory Medicine 10/06 “Critical Assessment of Treatment Options for IPF” -Published 10/05 in J. Vasculitis, Sarcoid. and DLD“Critical Assessment of Treatment Options for IPF” -Published 10/05 in J. Vasculitis, Sarcoid. and DLD Detection and diagnosis Monograph (2002)Detection and diagnosis Monograph (2002) American Journal of Nursing Mon. (2002)American Journal of Nursing Mon. (2002) Public Opinion Survey (Fall, 2005)Public Opinion Survey (Fall, 2005) “What if IPF” Medical Journal Advertorials“What if IPF” Medical Journal Advertorials

11 Funding Emerging Research (888) BIG Ball – approx. $260,000 raised!2006 BIG Ball – approx. $260,000 raised! $60,000 Grant to University of Michigan – (2/2005)$60,000 Grant to University of Michigan – (2/2005) Investigating role of circulating fibrocytes in IPFInvestigating role of circulating fibrocytes in IPF Investigating downregulation of TGF-b to slow disease progressionInvestigating downregulation of TGF-b to slow disease progression $60,000 Grant to UCLA$60,000 Grant to UCLA $43,000 Grant to UC$43,000 Grant to UC CPF/ATS Partnership Grant for Translational Research – $100,000 grant CPF/ATS Partnership Grant for Translational Research – $100,000 grant

12 CPF Research Questionnaire (888) Recently published online in Respiratory Journal; print issue expected this summerRecently published online in Respiratory Journal; print issue expected this summer Established in October 2003 by private restricted grantEstablished in October 2003 by private restricted grant Accurately represent the experiences of our membersAccurately represent the experiences of our members Identify patient and professional education needsIdentify patient and professional education needs Advance research efforts to find a cure for IPF Through NIH, Industry, Medical Center Clinical Trial RecruitmentAdvance research efforts to find a cure for IPF Through NIH, Industry, Medical Center Clinical Trial Recruitment

13 Research Questionnaire (888) Diagnostic Information 15% of patients with IPF had not had their diagnosis confirmed by HRCT or surgical lung biopsy15% of patients with IPF had not had their diagnosis confirmed by HRCT or surgical lung biopsy 44% of patients diagnosed with IPF within one year of having symptoms44% of patients diagnosed with IPF within one year of having symptoms

14 Research Questionnaire (888) % of respondents initially misdiagnosed with another respiratory condition before being diagnosed with IPF55% of respondents initially misdiagnosed with another respiratory condition before being diagnosed with IPF Of this subset of respondents:Of this subset of respondents: 17% were initially misdiagnosed with Bronchitis17% were initially misdiagnosed with Bronchitis 13% with an unspecified respiratory ailment13% with an unspecified respiratory ailment 12% with Asthma12% with Asthma 7% with COPD, 6% Emphysema7% with COPD, 6% Emphysema

15 Research Questionnaire (888) Potential Causes 14% of respondents have associated rheumatoid arthritis (RA); 53% GERD14% of respondents have associated rheumatoid arthritis (RA); 53% GERD 67% of respondents indicated that they had smoked cigarettes67% of respondents indicated that they had smoked cigarettes Median length of time 22 years, and the median time of cessation was 19 years before diagnosisMedian length of time 22 years, and the median time of cessation was 19 years before diagnosis

16 (888) Help raise awareness for IPF among policymakers in your state and in Washington (letters, s and phone calls)Help raise awareness for IPF among policymakers in your state and in Washington (letters, s and phone calls) Urge members of Congress to support funding for IPF education and research effortsUrge members of Congress to support funding for IPF education and research efforts Monitor and respond to legislation that impacts the IPF communityMonitor and respond to legislation that impacts the IPF community Support your local medical centers!Support your local medical centers!

17 CPF on the Hill Volunteer to come to DC If you can’t come, write your Members of Congress in support of CPF’s efforts!

18 2007 Campaign ACT (888) National IPF Awareness Week 2007National IPF Awareness Week 2007 Sept IPF Specific Legislation – being reintroduced in House and Senate (Rep. Nathan Deal, Sen. Norm Coleman) “Ending the Medicare 24 Month Waiting Period Act” introduced by Rep. Gene Green in House; expect to be reintroduced in Senate by Sen. Bingaman Pulmonary Rehabilitation Legislation (S. 329/H.R. 552) Patient oxygen rights

19 IPF Specific Legislation HR 178 passed House in 2005 with help from late Congressman Charlie Norwood S. 236 passed Senate in spring of 2006 with help from Senator Coleman BUT the bills will be reintroduced because of difference in language PLEASE call or mail a letter to your Members of Congress in support of this legislation

20 “Ending the Medicare Wait Period” When Medicare was expanded in 1972 to include people who have significant disabilities, lawmakers created a “Medicare waiting period.” Before they can get Medicare coverage, people with disabilities must first receive Social Security Disability Insurance (SSDI) for 24 months. Generally, SSDI begins five months after an individual’s disability has been certified. As a result, people with disabilities face three consecutive waiting periods prior to getting health coverage. IPF’s rapid progression yields a median survival rate of fewer than three years, yet IPF patients must wait two years – in some cases all of their remaining life – before they can qualify for Medicare coverage. Congress can help ease the burden of this terrible disease by passing H.R. 2869/S.1217 and giving IPF patients and others with life-threatening diseases immediate access to Medicare. There is already one important exception to the 24-month waiting period and that is for individuals with Lou Gehrig’s disease (ALS), a neuromuscular disease affecting approximately 30,000 people. The ALS exception passed Congress in December 2000 and went into effect July 1, While the ALS exception is appropriate, it’s important to note that more new cases of IPF are diagnosed in this country each year (48,000) than there are total cases of ALS, yet the end result for both diseases remain inextricably the same.

21 Pulmonary Rehab Legislation Problem: Having no national coverage policy for pulmonary rehabilitation means that beneficiaries in some regions have no access to this important therapeutic benefit. Legislation: This bipartisan legislation would, establish pulmonary rehabilitation in its own unique benefit category and lead CMS to promulgate a national coverage policy that ensures access to this scientifically proven medical therapy for Medicare beneficiaries suffering from COPD and other respiratory disorders.

22 Ways the CPF is Helping EVENTS LIKE THIS ONE!

23 CPF Accomplishments Now in its 6 th year, the CPF remains committed to providing our members, and all those fighting IPF, with the tools and resources they need to combat this devastating disease, while advocating on their behalf for expanded research efforts to find a cure. An abbreviated list of our achievements includes: Awarding research grants to leading medical centers to advance new approaches to understanding and treating IPF, examples include a $100,000 partnership grant with the American Thoracic Society, a $ 59,000 grant to the David Geffen School of Medicine, a $60,000 grant to the University of Michigan Health System, and $110,000 in grants to the University of Chicago (visit our Web page for complete list) Providing support—including IPF resources, physician referrals, free educational materials, patient resources and support—to tens of thousands of patients and families nationwide Advancing our national advocacy program, campaign ACT, through National IPF Awareness Weeks, advocating for patients through more than 200 meetings with Members of Congress in Washington, D.C., successfully advocating for the passage of H.R. 178 recognizing IPF and the need for increased education, awareness and research Partnered with more than 30 of the nation’s leading IPF treatment and research centers to improve disease education and awareness, and assist with patient recruitment for clinical trials Providing free IPF education seminars for thousands of patients and their families in partnership with medical centers around the country, Establishing 40 IPF support groups nationwide Distributing CPF Resource Kits free of charge to thousands of newly diagnosed patients and their families Providing a comprehensive Web site (www.coalitionforpf.org) with information, resources and services for pulmonary fibrosis patients as well as medical professionals.www.coalitionforpf.org

24 What you can do! Hold a local fundraiser – ask for a free fundraising kit from the CPF to get started! Organize a support group (if you don’t have one) with your local medical center or rehabilitation department Contact members of your local media (ask the CPF for a free media kit); Tell your story! Do a mail/ /phone campaign to your friends and family to contact their members of Congress Let the CPF know what you are doing – we can include it in our newsletter and website The CPF depends on patient and family support. Contribute to the CPF and ask others to do the same!

25 Thank you! Thanks to Dr. Steven Sahn and MUSC for hosting the event today! Thank you to the INCREDIBLE Ruth Oser!! Thank you Patients! Thank you Family Members and Caregivers!

26 Contact Information (888) Web:www.coalitionforpf.org Phone:(888) Address:1659 Branham Ln Suite F, #227 San Jose, CA Contacts: Mark Shreve, CEO Mishka Michon, Exec. VP, Development Teresa Geiger, VP Patient Education & Advocacy


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