INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VOLUME 35, NUMBER 4
Adolf Ratzka, PhD
Forty years ago, in October 1981, Gazette International Networking Institute, or GINI (which later became Post-Polio Health International), along with the Rehabilitation Institute of Chicago, brought over 200 polio survivors – including over 30 ventilator users – and health care professionals together in a ballroom at the Americana-Congress Hotel in Chicago to explore the question, “What Ever Happened to the Polio Patient?”........................................................MORE
Last issue, we reported on a major recall involving certain BiPAP, CPAP and mechanical ventilator devices made by Philips Respironics due to the breakdown of sound abatement foam used in these devices. Since that time, very little communication has been forthcoming from Philips. See below for what we did find out...............................................................................MORE
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Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
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Vol. 35, No. 4, August 2021
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
Adolf Ratzka, PhD
Looking Back on GINI's 1st International Conference, 40 Years Later
Forty years ago, in October 1981, Gazette International Networking Institute, or GINI (which later became Post-Polio Health International), along with the Rehabilitation Institute of Chicago, brought over 200 polio survivors – including over 30 ventilator users – and health care professionals together in a ballroom at the Americana-Congress Hotel in Chicago to explore the question, “What Ever Happened to the Polio Patient?”
The 1981 GINI conference was to impact my life in many decisive respects. Looking back on the meeting, I see several developments in my life as a result that might not have taken place without my participation in this most memorable event.
Gini Laurie had managed to spread the word about the conference, its themes and aims among her newsletter subscribers in all parts of the world, many of whom she knew personally, like myself. Never before had I seen so many persons with extensive disabilities in one place as in that Chicago hotel - hundreds of people, many of whom needed different types of mechanical ventilation. I saw people wheeling and even walking with chest shells (cuirass), on rocking beds, in an Iron Lung and holding a vacuum cleaner hose in their mouth that filled their lungs with air. We assembled in a huge meeting hall and milled around in the hallways during breaks. I still remember the excitement and euphoria I felt over being together with all these people.
Adolf Ratzka, PhD. Photo credit: Finn Ståle Felberg.
The majority were from North America, many had also come from Australia, Japan and Europe. These were not "moaners and groaners" (Audrey King's words) but individuals who had accomplished something in their lives, worked in professions, had raised families, traveled, had wide interests. With them I could identify - it was not only the disability we shared, it was the attitude. As a teenager I had been forced to spend five years in an institution. This experience had made me avoid other disabled people for a long time. It had taken me years to accept my disability. In Chicago, I felt completely at ease, proud to belong to this group of people who had come to learn and share how to make the best of their situation.
The powerful experience of being one of many with similar struggles, achievements and needs helped renew my interest in independent living and disability rights advocacy and become wholeheartedly involved in this work as soon as I returned to Sweden. It was the perfect time – after Chicago, I’d fly to California to see my friends in Berkeley and Los Angeles and defend my dissertation at UCLA. That done, I would have more time and energy to work for independent living and help bring the movement to Europe.
The conference was perfect for networking. I reconnected with dear old friends from my years at UCLA, such as Doug Martin and Bob Gorski, and I made new friends - Judy Heumann, Audrey King, Max and Colleen Starkloff, Marca Bristo, and others - people I would stay in contact with long afterward. Judy invited me to stay at her house while in Berkeley. I had not met her before. For us, Chicago was to become the beginning of a life-long close friendship and work relationship.
Adolf Ratzka (left) with Otto Bong and Susan Armbrecht
I first heard about the late effects of polio at the Chicago conference. In the twenty years after I contracted polio, I had only experienced improvements, such as gaining more in terms of muscular strength and learning a few tricks for doing things more by myself. Yet, I had the first bout of pneumonia in my life in 1979, friends of mine with the same compromised diaphragm had died, and my chest shell did not ventilate me sufficiently anymore. I first made the connection in Chicago, learned what signs to look out for, and became one of those who try to find solutions for themselves and others to stave off underventilation.
Attendees at GINI's 1981 conference, Americana-Congress Hotel, Chicago, Illinois
A couple of years earlier, I had started experimenting with masks for nose, mouth and face to replace my cuirass that had compressed my chest over the years and affected my ventilation. The Chicago conference showed me that I was far from being the only one who’d benefit from a comfortable nose mask. At the following conference that Gini organized in St. Louis, in 1983, I came with one of my first working prototypes.
Front, L-R: Gill Whitworth, England; Dr. Alba; Adolf Ratzka, Sweden; Stewart Anderson, Scotland; Susan Armbrecht, Ohio; Marion Greene. Back, L-R: Dr. D. Armin Fischer, California; Judy Raymond, Ohio; and Mickie Martin, Missouri, in the Gazette’s Suite 700.
One of the messages I took home from Chicago was that people with underventilation and their organizations do wise to make sure their medical contacts are updated about underventilation management and to collaborate with them. We need to listen to their expertise, they need to respect us as experts on our lives. The more we ourselves or our relatives and friends know about our condition, its treatment, and the assistive technology involved, the better we can make the best of our lives. This attitude includes the willingness to experiment with new technology as soon as products come on the market, to improvise and adapt existing devices by simple means, or to join forces with an inventor who listens and understands. An example of that partnership are the prototypes of my nose mask (which my friend Ernst Hörmann, a physicist and inventor in Germany, and I developed) that I presented at the GINI conference in St. Louis in 1983.
We need to be at least one step ahead of the development of our late effects of polio on our body. That was another powerful lesson of the Chicago conference for me. Getting older with a disability, we need to be proactive. I know, my breathing will not get better, so I try to maintain my vital capacity as much as I can by practicing with the CoughAssist and by frog breathing. I have been gradually losing strength in my fingers. Soon, the time will come when I can’t type anymore. What can I do? Learn to use the voice control features of my phone and computer.
What I had seen and heard in Chicago about underventilation impressed me and upon returning to Sweden I joined the Swedish organization RTP (Riksförbund för polio och trafikskadade or national organization for persons impaired by polio or traffic accidents) to spread the important facts. The organization had too much of a medical and diagnostic perspective on disability in my view but, more importantly, its membership would benefit from the new information. In 1984, we organized the first Scandinavian conference on underventilation and the late effects of polio in Stockholm with international presenters - people I’d met in Chicago - Audrey King, Toronto, Dr. Geoffrey Spencer, St. Thomas Hospital, London and one doctor, whose name I unfortunately have forgotten, from Dr. Augusta Alba’s team at Goldwater Memorial Hospital, New York. The organization also translated, reprinted and distributed the “Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors” that the Gazette International Network Institute had published a few months earlier.
In 1988, I moderated the First International Congress on Chronic Underventilation in Munich. This event was a direct outcome of GINI’s Chicago conference and its subsequent bi-annual conferences in St. Louis which Europeans increasingly attended. Over 300 people from Germany and other European countries who lived with the late effects of polio or similar disabilities or who were medical staff flocked to Munich. Again, some of the presenters at the Chicago conference – Audrey King, Dr. Spencer and others – were invited. A sequel to the 1988 conference was held again in Munich in 1992. Continuing the tradition, every year since 2008 an annual three-day congress on all aspects of home mechanical ventilation has been taken place in Munich.
Gini Laurie’s work has truly made an impact.
Click above to view the Proceedings
Update on Philips Recall
Last issue, we reported on a major recall involving certain BiPAP, CPAP and mechanical ventilator devices made by Philips Respironics due to the breakdown of sound abatement foam used in these devices. Since that time, very little communication has been forthcoming from Philips. They did report in July that they had filed multiple packages of CFR 806 applications for corrections and removals with the FDA in June. They need approval from the FDA before they can move forward sending out repair kits. There is typically an eight-week turnaround on these applications, they claim, but so far that eight-week period has come and gone with no word from the FDA or Philips.
Philips says it is producing roughly 55,000 repair kits per week currently. It would like to increase that to 80,000 per week in the 4th quarter of 2021 but has been hampered by supply constraints. Philips estimates there are 3-4 million devices affected globally, with about half that number in the US.
The FDA, for its part, has given the recall a Class I designation, the most serious type, and has claimed that it is a high priority for them. Last month, they posted a Frequently Asked Questions page for users of the affected devices.
Philips has been widely criticized by ventilator users over their communication regarding the recall. Patients have reported belatedly discovering news of the recall through second-hand sources, rather than from Philips. Those who have registered their device report receiving very little in the way of guidance or updates from Philips since. One user on Twitter reported finding an email in her spam folder informing her that the timeline for repairing her device could be as long as 12 months.
"I just feel like we're in the dark a bit," said Ray Denton, a ventilator user from Kirkland, Washington. "I don't feel safe using my vent, but I have no other option right now."
ABLE Age Adjustment Act
U.S. Sen. Bob Casey, D-Pa., along with a bipartisan group of 12 other senators, is sponsoring the ABLE Age Adjustment Act. The proposed piece of legislation aims to raise the age to 46 for Americans with disabilities to open ABLE accounts, allowing access to estimated six million people not previously eligible. The current age under the original ABLE Act is 26.
ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families. ABLE Accounts provide individuals with a disability the right to save money above the $2,000 asset limit for SSI and Medicaid.
Congress is expected to debate the proposal later this year. Casey wants to include the new ABLE bill as part of a bipartisan retirement package being considered in the Senate Finance Committee.
Rural Personal Assistant Services Project Wants to Hear from You
The Rural Personal Assistant Services project is expanding its interviews nationwide to collect more information about PAS service delivery and experiences across the country. The project, which studies how personal assistant services are associated with community participation in urban and rural places, is now conducting interviews with rural people who use personal assistance services anywhere in the United States.
Approximately 10 million people with disabilities receive paid personal assistance services (PAS). For many, these services are critical for social and community participation. In many regions, there are not enough PCA workers to meet the needs of people with self-care disabilities.
Are you a rural person with a disability who receives personal assistance services in your home?
Rural PAS is looking for people to be interviewed over the phone or via video chat.
They are interested in:
the types of personal assistance services you receive
what your workers are like
how you train them
about your general community and health experiences
The interview will last for approximately one hour, and you will be compensated $30 for your time.
IVUN's Resource Directory for Ventilator Assisted Living
IVUN's Resource Directory for Ventilator-Assisted Living has been newly updated. The directory contains listings of health professionals, home care companies, in-home care agencies, ventilator care facilities and more. Any updates and corrections may be sent to email@example.com.
Back to School Resources from PPMD
Parent Project Muscular Dystrophy (PPMD) has a collection of classroom resources on their website and in-print materials available upon request to make your transition as smooth as possible. Resources include classroom activities for understanding Duchenne, emergency information cards, "Education Matters" resources for parents and teachers, and webinars regarding both in-person and virtual learning.
Medical associations create united front to reduce barriers to noninvasive ventilation
On July 30, 2021, the journal CHEST published the outcomes and recommendations of a technical expert panel (TEP) on optimal noninvasive ventilation (NIV), conducted by the American College of Chest Physicians (CHEST), the American Academy of Sleep Medicine (AASM), the American Association for Respiratory Care (AARC) and the American Thoracic Society (ATS). The published reports will support a formal request for review of the CMS coverage determinations for the delivery of NIV therapy to Medicare beneficiaries. Read the summary.
A narrative review of the experience and decision-making for children on home mechanical ventilation
Rahman M, Jeffreys J, Massie J.
“Technological advances in mechanical ventilation have made home care possible for children requiring long-term ventilation. However, there are ethical and logistical challenges to transitioning home. The aim of this narrative review is to identify the experiences of the children and their families and the decision-making process to embark on home mechanical ventilation. A systematic review of the literature using Medline and OVID databases was conducted. Children <18 years requiring non-invasive ventilation or tracheostomy with ventilation or continuous positive pressure ventilation were included. The initial search yielded 1351 results, 1017 after duplications were removed and 111 after abstracts were reviewed. After applying inclusion and exclusion criteria to full text analysis, 48 references were analysed. The children and families described home ventilation as facilitating better health and functional status. However, they concurrently described social isolation, stigma, financial stress and loss of independence. The decision-making process to embark on home ventilation needs more research.”
Journal of Paediatrics and Child Health. 2021 Jun;57(6):791-796. doi: 10.1111/jpc.15506
Jiang W, Wang L, Song Y.
Titration and follow-up for home noninvasive positive pressure ventilation in chronic obstructive pulmonary disease: The potential role of tele-monitoring and the Internet of things
“Internet of Things-based management of home NIPPV, such as home titration and follow-up with the use of tele-monitoring, are emerging and yielding positive findings. However, clear conclusions based on RCT of tele-monitoring in COPD patients with NIPPV at home are only a few and large-scale multicenter studies are required for replication and further validation.”
Clinical Respiratory Journal. 2021 Jul;15(7):705-715. doi: 10.1111/crj.13352
Ribeiro C, Vieira AL, Pamplona P, et al.
Current Practices in Home Mechanical Ventilation for Chronic Obstructive Pulmonary Disease: A Real-Life Cross-Sectional Multicentric Study
“The study included 569 COPD patients on HMV from 15 centers. The majority were male, with a median age of 72 years and a high prevalence of obesity (43.2%) and sleep apnea (45.8%). A high treatment compliance was observed (median 8h/day), 48.7% with inspiratory positive airway pressure ≥ 20 cmH2O and oronasal masks were the preferred interface (91.7%). There was an equal distribution of patients starting HMV during chronic stable condition and following an exacerbation. Patients in stable condition were initiated in the outpatient setting in 92.3%. Despite the differences in criteria and setting of adaptation and a slightly lower BMI in patients starting HMV following an exacerbation, we found no significant differences regarding age, gender, ventilation pressures, time on HMV, usage, severity of airflow obstruction or current arterial blood gas analysis (ABGs) in relation to patients adapted in stable condition.”
Int J Chron Obstruct Pulmon Dis. 2021 Jul;16:2217-2226. doi: 10.2147/COPD.S314826
European Respiratory Congress 2021
The European Respiratory Society will hold their 2021 International Congress from September 5-8, 2021. This year's congress will fully virtual. Additional details are available online.
It was recently announced that CHEST 2021 will be a fully online event this year. It will take place October 17-20, 2021. For more information, go to https://chestmeeting.chestnet.org/.
JIVD/ERCA Conference in 2022
The 4th International Joint Meeting of the JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association) will be held March 3-5, 2022, at Cité Centre de Congrès, Lyon, France. For more information, go to www.jivd-erca2022.com.
CCHS Network Family Conference 2022
Next year's CCHS Network Family Conference will take place July 19-22, 2022, in Newport Beach, California. Family conferences foster a supportive and collaborative CCHS union between professionals and families, all with the intent of improving outcomes for CCHS patients. Registration for the conference and hotel reservations with our discounted group rate should be set up by the end of April 2021.