Coalition for Pulmonary Fibrosis

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www.coalitionforpf.org [phone]
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Were 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

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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

www.coalitionforpf.org [phone]
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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
• AARDA/NCAPG
• 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

www.coalitionforpf.org [phone]
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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.

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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

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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 Gehrigs 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)
• 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

www.coalitionforpf.org [phone]
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My Family and IPF

• Five Siblings Died in 10 Years

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Services in High Demand

• Free Resource Kit for IPF patients and families,
  including all educational materials (Lets Talk
  About IPF, Lung Transplantation, Pulm Rehab,
  Clinical Trials)
• Comprehensive Website for patients and medical
  professionals www.coalitionforpf.org
• 40 Support Groups Nationwide
• Living With IPF Seminars
• Patient mentoring, counseling, program referrals,
  transplant education support

www.coalitionforpf.org [phone]
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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

www.coalitionforpf.org [phone]
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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 progression
• 60,000 Grant to UCLA
• 43,000 Grant to UC
• CPF/ATS Partnership Grant for Translational
  Research 100,000 grant 2007-2008

www.coalitionforpf.org [phone]
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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 Recruitment

www.coalitionforpf.org [phone]
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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

www.coalitionforpf.org [phone]
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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 Bronchitis
• 13 with an unspecified respiratory ailment
• 12 with Asthma
• 7 with COPD, 6 Emphysema

www.coalitionforpf.org [phone]
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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

www.coalitionforpf.org [phone]
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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!

www.coalitionforpf.org [phone]
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CPF on the Hill

• Volunteer to come to DC
• If you cant come, write your Members of Congress
  in support of CPFs efforts!

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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
  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

www.coalitionforpf.org [phone]
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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 legislation

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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 individuals disability has been certified. As
  a result, people with disabilities face three
  consecutive waiting periods prior to getting
  health coverage.
• IPFs 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 Gehrigs 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,
  its 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.

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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.

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Ways the CPF is Helping

• EVENTS LIKE THIS ONE!

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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 supportincluding IPF resources,
  physician referrals, free educational materials,
  patient resources and supportto 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 nations
  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.

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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 dont 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
  same!

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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!

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Contact Information
Web www.coalitionforpf.org Email info_at_coalit
ionforpf.org Phone [phone] Address 16
59 Branham Ln Suite F, 227 San Jose, CA
95118 Contacts Mark Shreve, CEO Mishka Michon,
Exec. VP, Development Teresa Geiger, VP Patient
Education Advocacy
www.coalitionforpf.org [phone]