IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
VOLUME 37, NUMBER 6
DECEMBER 2023
The Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation, established in 1999 by Drs. Eveline Faure and Allen I. Goldberg, honors their lifelong colleague and friend, Margaret Pfrommer, a polio survivor and patient advocate. It is awarded to a clinician, ventilator-dependent professional, or advocate, who has advanced mechanical ventilation and fostered partnerships between physicians and patients.
This year's lecture was awarded to David Berlowitz, PhD. His lecture, "Sleep Disordered Breathing After Spinal Cord Injury," was delivered on October 9th, 2023, at CHEST's annual meeting in Honolulu, Hawaii...........................MORE
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Educational Opportunities
Conferences and webinars for health professionals and ventilator users
Ventilator-Assisted Living
Vol. 37, No. 6, December 2023
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2023 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.
Sleep Disordered Breathing After Spinal Cord Injury
The 2023 Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation
The Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation, established in 1999 by Drs. Eveline Faure and Allen I. Goldberg, honors their lifelong colleague and friend, Margaret Pfrommer, a polio survivor and patient advocate. It is awarded to a clinician, ventilator-dependent professional, or advocate, who has advanced mechanical ventilation and fostered partnerships between physicians and patients.
This year's lecture was awarded to David Berlowitz, PhD. His lecture, "Sleep Disordered Breathing After Spinal Cord Injury," was delivered on October 9th, 2023, at CHEST's annual meeting in Honolulu, Hawaii. Dr. Berlowitz is a clinician scientist who holds a joint appointment from The University of Melbourne and Austin Health in Melbourne, Australia. He maintains his specialist respiratory physical therapy practice within the Victorian Respiratory Support Service, the state-wide provider of domiciliary ventilator support to over 1,000 Victorians who live in their own homes thanks to breathing assistance overnight. While obtaining his PhD, Dr. Berlowitz discovered that cervical spinal cord injury causes immediate obstructive sleep apnea. This novel finding alerted the world to the previously unrecognised problem of immediate and severe sleep disordered breathing in tetraplegia.
Dr. Berlowitz collaborates internationally and leads a research team examining the causes and treatments of breathing and sleep disorders in neuromuscular disease, especially amyotrophic lateral sclerosis and after spinal cord injury. His research encompasses respiratory physiology, sleep, health systems research, and clinical trials of therapies and care models. His current research trials focus on improving access and uptake of ventilatory support, using ventilator-recorded data and artificial intelligence to optimize NIV, and multi-centre clinical trials testing therapies to augment neuroplasticity after spinal cord injury, and whether polysomnographic titration of non-invasive ventilation in people with amyotrophic lateral sclerosis modifies usage.
International Ventilator Users Network is proud to present this year's Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation: "Sleep Disordered Breathing After Spinal Cord Injury."
Past Awardees of the Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
2022 | Lisa F. Wolfe, MD, FCCP |
2021 | Debra Weese-Mayer, MD |
2020 | Peter C. Gay, MD, MS, FCCP |
2019 | Howard Panitch, MD, FCCP |
2018 | Douglas McKim, MD, FCCP |
2017 | Audrey J. King, MA |
2016 | Thomas G. Keens, MD |
2015 | John R. Bach, MD, FCCP |
2014 | Judith Fischer, MSLS, and Joan L. Headley, MS |
2013 | Roger Goldstein, MD, FCCP |
2012 | Norma Braun, MD, FCCP |
2011 | Not awarded |
2010 | Barbara Rogers |
2009 | Nicholas Hill, MD, FCCP |
2008 | Joshua Benditt, MD, FCCP |
2007 | Dudley Childress, MD |
2006 | Allen Goldberg, MD, FCCP |
2005 | Barry Make, MD, FCCP |
2004 | John Downes, MD, FCCP |
2003 | Anita Simonds, MD, FRCP |
2002 | Joseph Ramsdell, MD, FCCP |
2001 | Augusta Alba, MD |
2000 | Colin Sullivan, BScMed, MB, BS, PhD, FRA PhD, FRACP, FAA |
1999 | Dominique Robert, MD |
ADVOCACY
Transition For Young Adults With Disabilities Is Complicated, But Some Steps Can Help
In a recent article, Disability Scoop outlines some helpful steps that can be taken to ease the shift from pediatric to adult health care for adolescents with disabilities. They emphasize the significance of involving young individuals in health care decisions and empowering them to manage their own well-being. One resource, Got Transition, offers invaluable tools, including a decision-making toolkit and an online readiness quiz, aiding young people with disabilities and their families in this crucial transition. This article features compelling stories from individuals like Niketa Calame-Harris and Ashley Wilson, who found community support and learned to advocate for their health needs through condition-specific organizations. From gaining confidence in navigating insurance procedures to finding the right specialist team, these personal narratives highlight the importance of self-advocacy and tailored health care. Explore this insightful article offering practical advice and inspiring experiences for families navigating the complexities of health care transitions for young adults with disabilities.
Medicaid Home And Community-Based Services Program Gets $37 Billion Boost
The American Rescue Plan, passed in 2021, earmarked $12.7 billion for Medicaid home- and community-based services. However, the White House recently disclosed that the actual distribution surpassed expectations, allocating nearly $37 billion across all 50 states. This funding increase, a 10% rise in the federal government's contribution to the program between April 2021 and March 2022, aimed to support individuals reliant on Medicaid for community living assistance.
States received flexibility in utilizing the additional funds but were mandated to allocate them to services not available before April 2021. The bulk of the funding—almost $25 billion—is being directed toward enhancing the direct care workforce through pay hikes, bonuses, training, and initiatives to improve service quality, with the aim of reducing waiting lists for these crucial services. States have until March 31, 2025, to exhaust these allocated funds as per the Centers for Medicare and Medicaid Services.
NETWORKING
Porta-Lung on Display at Mütter Museum
A pristine, light blue example of a Porta-Lung can now be found at the Mütter Museum in Philadelphia. Philly Voice profiled the new acquisition and went into the history behind the Porta-Lung in a recently-published article, "The iron lung seems archaic, but a smaller version — like the one at the Mütter Museum — helped people, even recently."
The Porta-Lung was developed in 1975 by Sunny Weingarten, a polio survivor from age 7 ½, who sought to design a lighter, more portable tank than that used on iron lungs at the time. It was made from fiberglass, in four sizes, the extra small for children at 30” length and up to 71” for adults. Sunny traveled over 50,000 miles in his van using it in all 48 contiguous states.
New Book: The Girl in the Iron Lung
Released in November, The Girl in the Iron Lung chronicles the life of Dianne O’Dell, who was diagnosed with polio at the age of three and lived in an iron lung for 58 years until her death in 2008. She is noted as one of the longest-surviving victims of polio to have spent most of her life inside an iron lung, lying flat on her back for nearly six decades.
Her entire world was the iron lung, but she adapted. She learned to write with her toes and loved to paint pictures. She graduated from high school and took college classes. She tutored children, spoke at her local Rotary Club, and wrote a children’s book to encourage young people, especially those with physical disabilities, to never give up. The Girl in the Iron Lung tells the story of Dianne’s challenging, but rewarding life, and the efforts of her loving family to care for her daily needs.
RECENT RELEVANT PUBLICATIONS
Respiratory Management of Patients With Neuromuscular Weakness: An American College of Chest Physicians Clinical Practice Guideline and Expert Panel Report
Khan A, Frazer-Green L, Amin R, Wolfe L, Faulkner G, Casey K, Sharma G, Selim B, Zielinski D, Aboussouan LS, McKim D, Gay P.
“Evidence of best practices for respiratory management in NMD is limited and is based primarily on observational data in amyotrophic lateral sclerosis. The panel found that pulmonary function testing every 6 months may be beneficial and may be used to initiate noninvasive ventilation (NIV) when clinically indicated. An individualized approach to NIV settings may benefit patients with chronic respiratory failure and sleep-disordered breathing related to NMD. When resources allow, polysomnography or overnight oximetry can help to guide the initiation of NIV. The panel provided guidelines for mouthpiece ventilation, transition to home mechanical ventilation, salivary secretion management, and airway clearance therapies. The guideline panel emphasizes that NMD pathologic characteristics represent a diverse group of disorders with differing rates of decline in lung function. The clinician's role is to add evaluation at the bedside to shared decision-making with patients and families, including respect for patient preferences and treatment goals, considerations of quality of life, and appropriate use of available resources in decision-making.”
Chest. 2023 Aug;164(2):394-413. doi: 10.1016/j.chest.2023.03.011.
Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation
Ozcan G, Zirek F, Tekin MN, Bayav S, Bakirarar B, Duman B, Cobanoglu N.
“Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential determinants on the quality of life of parents who have children with HMV.”
Pediatr Pulmonol. 2023 Dec 13. doi: 10.1002/ppul.26799.
Long-term non-invasive ventilation in children: Transition from hospital to home
MacLean JE, Fauroux B.
“Long-term non-invasive ventilation (NIV) is an accepted therapy for sleep-related respiratory disorders and respiratory insufficiency or failure. Increase in the use of long-term NIV may, in part, be driven by an increase in the number of children surviving critical illness with comorbidities. As a result, some children start on long-term NIV as part of transitioning from hospital to home. NIV may be used in acute illness to avoid intubation, facilitate extubation or support tracheostomy decannulation, and to avoid the need for a tracheostomy for long-term invasive ventilation. The decision about whether long-term NIV is appropriate for an individual child and their family needs to be made with care. Preparing for transition from the hospital to home involves understanding how NIV equipment is obtained and set-up, education and training for parents/caregivers, and arranging a plan for clinical follow-up. While planning for these transitions is challenging, the goals of a shorter time in hospital and a child living well at home with their family are important.”
Paediatr Respir Rev. 2023 Sep;47:3-10. doi: 10.1016/j.prrv.2023.01.002.
EDUCATIONAL
OPPORTUNITIES
2024 CCHS FAMILY CONFERENCE
Next year's CCHS Family Conference will take place in Newport Beach, California, June 26-28, 2024, at the Newport Beach Renaissance Hotel. Registration and room blocks are expected to open in early January.
ATS 2024
The ATS 2024 International Conference will be held in San Diego, California, May 17-22, 2024. More information can be found on the conference website. Registration is not yet available.
CHEST 2024
CHEST 2024 will be held in Boston, Massachusetts, October 6-9, 2024. Registration is not yet open, but hotels may be booked through a link on their site. The meeting promises to deliver the most up-to-date education in clinical pulmonary, critical care, and sleep medicine with world-class speakers, hands-on simulation opportunities, interactive educational games, and much more.