INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VOLUME 37, NUMBER 1
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Lisa F. Wolfe, MD, FCCP, professor of medicine and neurology at Northwestern University Feinberg School of Medicine. The lecture, Breathing Is a Human Right: Equity for Ventilatory Disability, was presented on October 19th at CHEST 2022. This was the 23nd year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation (HMV)............................................................................MORE
As part of Post-Polio Health International's 2023 Educational Program, Dr. Norma MT Braun, MD, FACP, FCCP, delivered a lecture on noninvasive ventilation. Dr. Braun is Ombudswoman, Clinical Professor of Medicine, Icahn School of Medicine, Mt. Sinai Health System and Senior Attending, Department of Medicine, Pulmonary/Critical Care/Sleep Division, Mt. Sinai Morningside (St. Luke's) & Mt. Sinai West (Roosevelt). She is semiretired but sees patients weekly, and runs and participates in clinical trials for new construction of non-invasive negative pressure ventilation. She has lectured and written extensively on noninvasive ventilation....................................................................................................MORE
Educate, discuss, take action
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Conferences and webinars for health professionals and ventilator users
Vol. 37, No. 1, February 2023
Editor: Brian Tiburzi
Designer: Brian Tiburzi
© 2023 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to email@example.com.
Breathing Is a Human Right:
Equity for Ventilatory Disability
Lisa F. Wolfe, MD, FCCP
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Lisa F. Wolfe, MD, FCCP, professor of medicine and neurology at Northwestern University Feinberg School of Medicine. The lecture, Breathing Is a Human Right: Equity for Ventilatory Disability, was presented on October 19th at CHEST 2022. This was the 23nd year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation (HMV).
Established in 1999 by Dr. Allen Goldberg and Dr. Eveline Faure, the lecture honors polio survivor and advocate Margaret Pfrommer from Chicago, Illinois. Pfrommer, a quadriplegic from polio, spent part of her life in a nursing home after her mother’s death. This experience compelled her to become an advocate for herself and for all those with significant disabilities. The purpose of the endowment is to honor an individual who possesses superior knowledge of home-based mechanical ventilation and who promotes the health professional/patient partnership.
Past Awardees of the Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
Dominique Robert, MD
Colin Sullivan, BScMed, MB, BS, PhD, FRA PhD, FRACP, FAA
Augusta Alba, MD
Joseph Ramsdell, MD, FCCP
Anita Simonds, MD, FRCP
John Downes, MD, FCCP
Barry Make, MD, FCCP
Allen Goldberg, MD, FCCP
Dudley Childress, MD
Joshua Benditt, MD, FCCP
Nicholas Hill, MD, FCCP
Norma Braun, MD, FCCP
Roger Goldstein, MD, FCCP
Judith Fischer, MSLS, and Joan L. Headley, MS
John R. Bach, MD, FCCP
Thomas G. Keens, MD
Audrey J. King, MA
Douglas McKim, MD, FCCP
Howard Panitch, MD, FCCP
Peter C. Gay, MD, MS, FCCP
Debra Weese-Mayer, MD
PHI Lecture Series: Noninvasive Ventilation with Dr. Norma MT Braun, MD FACP, FCCP
As part of Post-Polio Health International's 2023 Educational Program, Dr. Norma MT Braun, MD, FACP, FCCP, delivered a lecture on noninvasive ventilation. Dr. Braun is Ombudswoman, Clinical Professor of Medicine, Icahn School of Medicine, Mt. Sinai Health System and Senior Attending, Department of Medicine, Pulmonary/Critical Care/Sleep Division, Mt. Sinai Morningside (St. Luke's) & Mt. Sinai West (Roosevelt). She is semiretired but sees patients weekly, and runs and participates in clinical trials for new construction of non-invasive negative pressure ventilation. She has lectured and written extensively on noninvasive ventilation.
In her lecture, Dr. Braun covers the history and development of both negative and positive pressure mechanical ventilation. She discusses the advantages and disadvantages of each, who might benefit from each and what an ideal respiratory care team should look like. Even if you feel you are well-versed on these issues, you may benefit from watching the Q & A portion the video at the conclusion of Dr. Braun formal lecture.
The series has been made possible by a generous grant from the Christopher and Dana Reeve Foundation.
Changes Coming To Medicaid, Disability Services As Public Health Emergency Ends
With the Biden administration planning to soon end the emergency status prompted by the pandemic, advocates are warning that the shift will have major implications for people with disabilities that go far beyond COVID-19, reports Disability Scoop.
Under the public health emergency, which has been in place since 2020, states have been eligible for extra federal funding for Medicaid in exchange for agreeing not to drop most beneficiaries from the program. The federal government has also given home and community-based services providers added flexibilities as they work to maintain staffing.
But now the White House says that it intends to extend the public health emergency to May 11, at which point it will end.
The change will trigger a massive effort by Medicaid programs nationwide to re-evaluate each beneficiary to determine whether or not they remain eligible. “It’s vital that people with disabilities and their families make sure they respond to any mail or email from their Medicaid office, that their address is up to date with the state, and that they are in compliance with the financial eligibility rules under Medicaid,” said David Goldfarb, director of policy at The Arc.
Changes Proposed for Determining SSI Benefits
The Social Security Administration (SSA) is looking to make a change to the way that it determines monthly payments for people with disabilities receiving Supplemental Security Income (SSI) benefits.
Under current rules, SSI beneficiaries can see their payments docked if someone else regularly provides them with meals or groceries. A new proposal would change that.
The proposed rule, published this month in the Federal Register, would update Social Security Administration regulations to exclude food from the way it calculates what’s known as “in-kind support and maintenance.” In addition, the agency intends to tweak its definition of income to allow for this exception.
The proposed rule will be up for public comment through April 17 before it can be finalized.
2023 Camps for Ventilator-Assisted Children
Several organizations will once again be offering summer camps for ventilator-assisted children. IVUN has gathered the latest details below. This information is subject to change, so be sure to check their website or Facebook pages for the latest updates.
Camp Inspiration is a family program in Lake Luzerne, New York, for children (ages 5-21 years old) who are BIPAP or ventilator dependent. This year's camp will take place June 14-18. Additional details are available on their website.
Camp Pelican is a week-long overnight resident camp for children with pulmonary disorders-such as but not limited to severe asthma, cystic fibrosis, tracheotomy and ventilator assisted children. The 2023 session is scheduled for May 28 - June 3. Applications are available online.
CHAMP Camp provides a summer camp experience in Martinsville, Indiana, for children and adolescents age 6-18 with tracheostomies and those who require technological respiratory assistance. Activities include zip lining, swimming, canoeing and climbing that encourage independence, confidence and self-esteem to create memories that last a lifetime. This year's camp will take place June 11-15. For more information visit champcamp.org or contact Jamie Mitchell, 317-679-1860, firstname.lastname@example.org.
FRESH AIR CAMP
Fresh Air Camp is a 6-day, overnight camp for children with tracheostomies or respiratory technology needs held every June on the grounds of Camp Cheerful in Strongsville, Ohio. This year's camp is scheduled for June 11-16. More details at www.freshaircamp.org.
PA VENT CAMP
PA Vent Camp is a week-long summer camp held in June each year and is open to children ages 5 to 18 who use any sort of mechanical ventilation (ventilators, BiPAP, or CPAP). Hosted on the fully-accessible grounds of Camp Victory in Millville, PA, campers have access to a zip-line, rock wall, pond, pontoon boat, tree house, wildlife center, board games, and arts and crafts. This year's camp is scheduled for June 25-29. Find out more on their website or contact 717-531-5338 or email@example.com.
Take Part in a Healthcare Access Study
The Southwest ADA Center at TIRR Memorial Hermann is conducting a study on the experiences of people with disabilities with the accessibility of their health care. This study is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
They are looking for US residents (18+) who have experiences with the health care system? They are interested in learning about your experiences through the following survey link:
RECENT RELEVANT PUBLICATIONS
Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation
Jeffreys J, Rahman M, Vears D, Massie J.
“Despite a recent increase in the use of ventilators in the home setting for children with chronic respiratory failure, there is currently no unified approach for clinical decision-making for children requiring long-term mechanical ventilation. The purpose of this study is to understand the clinician's perspective on decision-making around home ventilation for children, and how home-based care contributes to successful outcomes in this population.”
J Paediatr Child Health. 2023 Jan 21. doi: 10.1111/jpc.16333. Epub ahead of print.
Quality of Life and Stress Levels in Patients under Home Mechanical Ventilation: What Can We Do to Improve Functioning Patients at Home? A Survey Study
Kwiatosz-Muc M, Kopacz B, Fijałkowska-Nestorowicz A.
“26% of patients assessed their quality of life as bad or very bad and 34% as good or very good. Stress levels measured with PSS-10 Scale were high level. For the group of patients with neurological disorders, stress levels were significantly higher than for the group of patients with pulmonological disorders.
“Conclusions: The higher the stress levels of patients, the lower the quality of life in particular domains. Improving the living conditions of HMV patients can influence improving their quality of life.”
Int J Environ Res Public Health. 2023 Jan 3;20(1):874. doi: 10.3390/ijerph20010874.
Home Use of Mechanical Insufflation/Exsufflation in Adult Patients in Western Switzerland
Mitropoulou G, Heinzer R, Janssens JP, von Garnier C, Prella M.
“Regular home MI-E use was associated with greater symptom burden and overall satisfaction with the device and was not influenced by baseline CPF. Patients without substantial bronchorrhea might not use the MI-E regularly but might still need to use the device at home during acute events. Therefore, familiarity with the MI-E via appropriate and repeated practical training is crucial.”
Respiration. 2023 Feb 1:1-10. doi: 10.1159/000529166. Epub ahead of print.
Pulmonary care for ALS: Progress, gaps, and paths forward
“Lack of formal training and poor financial incentives have led to a paucity of both clinicians and active clinical research engaging in the home respiratory care of ALS. Criteria for noninvasive ventilation (NIV) initiation are controversial, and few guidelines exist on the ideal subsequent adjustments of NIV with evolving disease. Consequently, many patients with ALS tolerate NIV poorly and must face the harrowing decision of hospice vs tracheostomy. Advancement of respiratory care in ALS has been hindered by critical gaps in pulmonologist availability, training in chronic respiratory failure, financial support, clinical research, and clarity on ventilation management beyond initiation.”
Muscle Nerve. 2023 Jan 19. doi: 10.1002/mus.27779. Epub ahead of print.
ATS 2023 International Conference
The American Thoracic Society 2023 International Conference will be held May 19-24, 2023, in Washington, DC. ATS 2023 showcases the latest advances and discoveries in respiratory science, patient care and global respiratory health. Get more info and register at https://conference.thoracic.org.
ERS International Congress 2023
The European Respiratory Society (ERS) International Congress will take place in Milan, Italy, September 9-13, 2023. Find out more at www.ersnet.org/congress-and-events/congress/. Registration will open in Spring.
October 8-11, 2023, Honolulu, Hawaii. The CHEST 2023 Annual Meeting will take place in person and will offer more than 300 educational sessions, including simulation and interactive learning opportunities. Sign up at the link above to receive the latest updates via email.