Coalition for Pulmonary Fibrosis

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Transcript Coalition for Pulmonary Fibrosis
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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
CPF Goals & Objectives
•Accelerate research efforts to find new treatments,
or a cure, for IPF
•Increase public awareness of PF
•Educating, 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 community
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Nonprofit Partners Nationwide
•The American Thoracic Society
•The Anne Harroun Landgraf Foundation
•Mary D. Harris Memorial Foundation
•The Pulmonary Paper
•Caring Voice Coalition
•Second Wind Lung Transplant Association
•The Fred J. Brotherton Charitable Foundation
•Pulmonary Fibrosis Association (1996-2003)
•American Lung Association Chapters
•30+ 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
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They say IPF is Rare…
• But the Yellow-tailed Woolly Monkey is
really rare – with 250 of them in the
Peruvian Andes.
IPF More Common than Ever
The population of Columbia, SC is nearly
the same as the number affected by
• 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
What is Awareness of IPF?
•Recent 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
•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 research
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My Family and IPF
• Five Siblings Died in 10 Years
Services in High Demand
•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
•40+ Support Groups Nationwide
•“Living With IPF” Seminars
•Patient mentoring, counseling, program referrals, transplant
education & support
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Professional Education
•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
•Detection and diagnosis Monograph (2002)
•American Journal of Nursing Mon. (2002)
•Public Opinion Survey (Fall, 2005)
•“What if IPF” Medical Journal Advertorials
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Funding Emerging Research
•2006 BIG Ball – approx. $260,000 raised!
•$60,000 Grant to University of Michigan – (2/2005)
•Investigating role of circulating fibrocytes in IPF
•Investigating downregulation of TGF-b to slow disease
•$60,000 Grant to UCLA
•$43,000 Grant to UC
•CPF/ATS Partnership Grant for Translational
Research – $100,000 grant 2007-2008
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CPF Research Questionnaire
•Recently published online in Respiratory Journal; print
issue expected this summer
•Established in October 2003 by private restricted grant
•Accurately represent the experiences of our members
•Identify patient and professional education needs
•Advance research efforts to find a cure
for IPF Through NIH, Industry, Medical Center Clinical Trial
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Research Questionnaire
Diagnostic Information
•15% 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 symptoms
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Research Questionnaire
•55% of respondents initially misdiagnosed
with another respiratory condition before
being diagnosed with IPF
•Of this subset of respondents:
•17% were initially misdiagnosed with
•13% with an unspecified respiratory
•12% with Asthma
•7% with COPD, 6% Emphysema
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Research Questionnaire
Potential Causes
•14% of respondents have associated
rheumatoid arthritis (RA); 53% GERD
•67% of respondents indicated that they
had smoked cigarettes
•Median length of time 22 years, and the
median time of cessation was 19 years
before diagnosis
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•Help raise awareness for IPF among
policymakers in your state and in Washington
(letters, emails and phone calls)
•Urge members of Congress to support funding for
IPF education and research efforts
•Monitor and respond to legislation that impacts the
IPF community
•Support your local medical centers!
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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!
2007 Campaign ACT
•National IPF Awareness Week 2007
Sept. 22-29
IPF Specific Legislation – being reintroduced in
House and Senate (Rep. Nathan Deal, Sen. Norm
“Ending the Medicare 24 Month Waiting Period
Act” introduced by Rep. Gene Green in House;
expect to be reintroduced in Senate by Sen.
Pulmonary Rehabilitation Legislation (S. 329/H.R.
Patient oxygen rights
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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
“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, 2001. 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
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
Ways the CPF is Helping
CPF Accomplishments
Now in its 6th 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
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 ( with information, resources and services for
pulmonary fibrosis patients as well as medical professionals.
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/email/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
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!
Contact Information
[email protected]
(888) 222-8541
1659 Branham Ln
Suite F, #227
San Jose, CA 95118
Mark Shreve, CEO
Mishka Michon, Exec. VP, Development
Teresa Geiger, VP Patient Education
& Advocacy
(888) 222-8541