1685 Branham Lane, Suite 227, San Jose, CA 95118

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1685 Branham Lane, Suite 227, San Jose, CA
95118 888.222.8541 info_at_coalitionforpf.org
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Unifying Nonprofit Efforts

• Mary D. Harris Memorial Foundation
• The Pulmonary Paper
• Caring Voice Coalition
• AARDA/NCAPG
• Second Wind Lung Transplant Association
• The Anne Harroun Landgraf Foundation
• The Fred J. Brotherton Charitable Foundation
• Pulmonary Fibrosis Association (1996-2003)
• American Lung Association(s)
• 30 medical and research institutions nationwide
• The need for IPF education and awareness
  initiatives for patients and healthcare
  professionals has never been greater. Marvin
  Schwarz, MD, CPF Chair

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CPF Objectives

• Unify nonprofit education and advocacy efforts to
  help those patients and families fighting PF
• Improve detection, diagnosis and treatment of PF
  in clinical community
• Encourage, support and fund emerging research to
  ultimately lead to a cure

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Services Remain in High Demand

• Free Resource Kit for IPF patients and families,
  including all ed. materials
• Comprehensive Website for patients and medical
  professionals www.coalitionforpf.org
• 34 Support Groups Nationwide
• Living With IPF Seminars
• Mentoring, counseling, program referrals,
  transplant education support
• Toll-free number - 888-222-8541

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Research and Professional Education

• Detection and diagnosis Mon. (2002)
• American Journal of Nursing Mon. (2002)
• Basic Research Questionnaire (2003-2005) -Submitt
  ing for publication 6/05
• IPF Treatment Guidelines Monograph
  (2004) -Submitted for publication 4/05
• 60,000 Research Grant to University of Michigan
  2/05
• Role of Circulating fibrocytes TGF-b
  downregulation
• Financial support to UMinn, Duke, UCLA
• Public Opinion Survey (Fall, 2005)

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CPF Basic Research Questionnaire

• Established in October 2003 by private restricted
  grant
• Advance awareness of IPF issues
• Strengthen CPF programs and advocacy efforts
• Identify patient and professional education needs
• Advance research efforts to find a cure for IPF

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Interim Results (First 1,000 Responses)

• DIAGNOSTIC INFORMATION
• 15 of patients with IPF had not had their
  diagnosis confirmed by HRCT or surgical lung
  biopsy. ATS C.S. on IPF states either test, or
  both, are recommended to make a conclusive
  diagnosis
• 44 of patients diagnosed with IPF within one
  year of having symptoms of IPF, however 18 were
  accurately diagnosed with IPF more than one year
  after the onset of symptoms, 16 after more than
  two years, and 12 after more than 5 years

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Interim Results (Cont.)

• 55 of respondents indicated that they were
  initially misdiagnosed with another respiratory
  or pulmonary condition before being accurately
  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, and 6 with Emphysema

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Interim Results (Cont.)

• POTENTIAL CAUSES OF IPF
• 14 of respondents indicated also being diagnosed
  with rheumatoid arthritis 53 GERD
• 67 of respondents indicated that they had smoked
  cigarettes the median length of time smoking was
  22 years, and the median time of smoking
  cessation was 19 years before their IPF diagnosis

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Interim Results (Cont.)

• 22 of respondents indicated exposure to
  asbestos, 21 to molds 13 heavy use of
  pesticides
• 11 at least one other family member with IPF
• Among current patients, 30 of responded that
  their physician has not discussed or even
  mentioned the topic of lung transplantation of
  those under the age of 60, only 24 have been
  advised to register for a transplant

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You Can Help Advance IPF Issues

• Help raise awareness for IPF among
  policymakers in your state and in Washington,
  D.C.
• 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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What Do We Accomplish?

• Targets
• -U.S. Congress (Senate House)
• -Federal Agencies (DHHS, NIH, NHLBI, CMS)
• -State Government (Governors Office, State
  Health Commissioner, State senate House)
• -State Health Agencies (Insurance Comm.,
  Medicare Administrator)

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2005 Activities

• National IPF Awareness Week 9/25-10/1
• Ending the Medicare 24 Month Waiting Period Act
  of 2005
• Function 550 Increases Finances public health
  services, including NIH, DHHS, CDC CPF and more
  than 250 groups advocating
• Stem Cell Research Enhancement Act of 2005 HR
  810 Expands the number of stem cells available
  for research support of 200 in Congress

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CPF Contact Information

• Web www.coalitionforpf.org
• Email info_at_coalitionforpf.org
• Phone [phone]
• Address

1685 Branham LaneSuite 227San Jose, CA 95118