Episode # 54 Pulmonary Fibrosis, An Advocate’s Story

Dr. Frederik Trinkmann is the deputy head of Thoraxklinik at Heidelberg University.  Trained as a medical specialist for intensive care medicine.  He is a distinguished researcher with >60 publications. In this episode, he elaborates on his personal journey to adopting oscillometry and how he leverages oscillometry to make clinical decisions for enhanced patient care in COPD.

Karen Frankland, Lead Nurse for Education and Support, FeNO by NIOX NIOX has been at the forefront of FeNO testing for 25 years, and this year, Vitalograph is marking 60 years in respiratory diagnostics expertise. During these 60 years, Vitalograph has become synonymous with spirometry; and as an organization, it is continually looking at how it can enable better patient outcomes, with accurate, reliable data, through a range of diagnostic solutions. On today’s conversation, we are exploring Spirometry and FeNO testing. Specifically, how these tests provide physicians with a variety of data to inform asthma care pathways for patients. Karen Frankland is a primary care respiratory nurse specialist and qualified teacher with a wide range of experience within the N.H.S., occupational health, research, the pharmaceutical industry, and education. I have been involved in education, which is my passion! for approximately 20 years. Her current role is as Lead Nurse for Education and Clinical Support for The NIOX Group where I am responsible for the design and delivery of masterclass educational events on the topic of asthma and Fractional Exhaled Nitric Oxide Testing (FeNO). She also works with several other organizations and training providers, delivering training for a range of health care professionals. Topics include asthma, COPD, spirometry and FeNO. Organizations include M&K Update, Primary Care Respiratory Training Centre plus a few pharmaceutical companies.

Kathy Przywara Vice President of Community at Asthma and Allergy Foundation of America Today we had a conversation with Kathy Przywara, Vice President of Community at Asthma and Allergy Foundation of America about Chronic Cough and her own experiences with chronic cough. Kathy Przywara is the Vice President of Community at Asthma and Allergy Foundation of America (AAFA). She has worked in community management since 2005, managing and engaging groups of constituents. Her career has focused on community/patient engagement and support. She has extensive experience in community-building, digital content marketing, and social media. Ms. Przywara served as the Assistant Community Manager of the Kids with Food Allergies Foundation (KFA) when that organization merged with AAFA in 2013. She brought her community building expertise to AAFA and helped launch AAFA’s award-winning asthma and allergy patient support community in 2016. Under her guidance, AAFA’s two online communities have grown to be the largest patient support communities available for these conditions. Asthma and Allergy Foundation of America https://aafa.org/

Toshiaki Kawakami, M.D., Ph.D. Professor, La Jolla Institute for Immunology Center for Autoimmunity and Inflammation We spoke with Professor Toshiaki Kawakami or Toshi as his colleagues and students call him. He is one of the leaders of La Jolla Institute for Immunology was established in 1988 by a coalition of leaders from academia and industry. These leaders envisioned a unique and dynamic partnership between basic science and applied research, one that would lead to breakthroughs in the understanding of the immune system and improve human health through the development of treatments and cures for immune system disorders. Dr. Toshia’s lab studies inflammatory diseases such as allergic asthma, food allergies and Crohn’s disease, which have been rising in prevalence for the last several decades. He is particularly interested in histamine-releasing factor (HRF) and its role in promoting inflammation in the lung and gut. La Jolla Institute for Immunology Center for Autoimmunity and Inflammation Website: https://www.lji.org/research/research-centers/center-for-autoimmunity-and-inflammation/  

Teresa Barnes, Chief Executive Warrior She first became involved with the PF community after losing five family members to IPF. Teresa began her career in journalism and has used those skills as she has navigated the worldwide PF community, seeking out-of-the-box solutions for treating PF. Teresa was a founder of the first IPF patient organization, the Coalition for Pulmonary Fibrosis back in 2001. She has served on multiple boards, including ATS, where she spearheaded multiple advocacy efforts. A member of PF Warriors for five years, Teresa will help us to open doors around the world. PF Warriors Website https://pfwarriors.com/

Paula Blonski, President ARDS Alliance Rick Bressler, ARDS Survivor Today we had an interesting conversation with Paula Blonski, President-ARDS Alliance and Rick Bressler a patient who had Covid double lung pneumonia, Covid induced ARDS, but he ultimately needed a double lung transplant to survive.  Acute respiratory distress syndrome (ARDS) is an acute, diffuse, inflammatory form of lung injury and life-threatening condition in seriously ill patients, characterized by poor oxygenation, pulmonary infiltration, and acute onset. ARDS Alliance Website https://ardsalliance.org/

Annaka Haynes is a nursing student who has had Cystic Fibrosis since she was 6 weeks old. Trikafta developed by Vertex Pharmaceuticals was first approved by the FDA on October 21, 2019. This treatment is a triple combination regimen for cystic fibrosis patients starting at ages 2 years and older who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene or a mutation in the CFTR gene that is responsive to Trikafta based on in vitro data.

Rory Chan (MBChB, MRCP(UK), PhD) is a senior respiratory registrar currently working in Ninewells Hospital, Dundee, United Kingdom Dr. Chan recently completed his PhD relating to precision medicine in severe asthma and has published more than 20 first-author peer reviewed papers in this area. He is a Honorary Clinical Lecturer at the University of Dundee, an Early Career Editor at CHEST, and the principal investigator of two phase IV biologic clinical trials in severe asthma.

Kevin Carney, ANP-BC- Director of Temple Lung Health Center Kevin Carney is a certified Adult Nurse Practitioner (ANP-BC) and Director of The Temple Lung Center service line. He oversees Nurse Practitioners and Physician Assistants who work for the Pulmonary, Lung Transplant, and Respiratory Intensive Care services at Temple University Hospital. Temple is home of the most active Lung Transplant and Bronchoscopic Lung Volume Reduction (BLVR) programs in the United States. He oversees Nurse Practitioners and Physician Assistants who work for the Pulmonary, Lung Transplant, and Respiratory Intensive Care services.  Involvement with professional organizations include the American Board for Transplant Certification (ABTC), where he serve on the Board of Governors, and the International Society of Heart and Lung Transplant (ISHLT) as a member of the Advanced Lung Failure and Transplantation Interdisciplinary Network Steering Committee.

We believe in the power of the patient voice to provide inspiration and hope to others in similar situations. That’s why we were thrilled to sit down with John Linnell, an individual who lives with COPD and who, since his diagnosis, has been advocating for COPD awareness, resources, and research.   John Linnell, COPD Patient John was diagnosed in 2005 and his journey led him to key roles in advocacy, in which he is active. John is a member of the Board of Directors for the US COPD Coalition and is an Advocacy Captain for the COPD Foundation. He serves on the Executive Board of Directors for EFFORTS (an international support group for the COPD community), a member of the Governing Board for the COPD PPRN (Patient Powered Research Network), and the Board of Directors of Right2Breathe, a nonprofit emphasizing early diagnosis and patient education. John also sat as a Consumer Reviewer for CDMRP (Congressional Directed Medical Research Programs) for the Department of Defense and now mentors new Consumer Reviewers.   John was a Co-investigator for a 3-year PCORI-funded study at Johns Hopkins: “Impact of a Peer Support Program Amongst COPD Patients and Their Caregivers”.   CMS/Medicare recently appointed John to a term as a patient representative on a Technical Expert Panel for the 2024 Impact Assessment of CMS Quality and Efficiency Measures. He also was asked to join the Patient Engagement Collaborative for the FDA. He also is a Patient Scholar for DIA (Drug Information Association) and spoke at their annual international conference this past year.   In addition, John is a frequent speaker and/or panel member at numerous national conferences dealing with both respiratory issues as well as advising digital health start-up enterprises as a Patient Advisor.