IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
This issue sponsored by:
VOLUME 33, NUMBER 6
DECEMBER 2019
Children Are Not Just Little Adults - Except Sometimes
The 2019 Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
Howard Panitch, MD, FCCP
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Howard Panitch, MD, FCCP, and was presented on October 21st at CHEST 2019 in New Orleans, Lousiana. This was the 19th year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation................................MORE
The 2018 Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation, "Saving Lives, One Ventilator at a Time… HMV in 2018… and beyond," by Douglas A. McKim, MD, FCCP, DABSM, is now available for viewing online. Dr. McKim is Professor of Medicine, University of Ottawa and Medical Director, CANVent Respiratory Services and The Ottawa Hospital Sleep Centre in Ottawa, Canada...........................................................................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
Industry
The business of living with a ventilator
Ventilator-Assisted Living
Vol. 33, No. 6, December 2019
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2019 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.
Children Are Not Just Little Adults -Except Sometimes
The 2019 Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation
Howard Panitch, MD, FCCP
Howard Panitch, MD, FCCP
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Howard Panitch, MD, FCCP, and was presented on October 21st at CHEST 2019 in New Orleans, Lousiana. This was the 19th year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation.
Dr. Panitch is the clinical director of the Division of Pulmonary Medicine and the medical director of the Technology Dependence Center at Children's Hospital of Philadelphia and has long had an interest in the care of children with complex respiratory problems and those requiring technology assistance.
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 mechanical ventilation (HMV) and who promotes the health professional/patient partnership.
This year's lecture, entitled "Children Are Not Just Little Adults - Except Sometimes," discusses several aspects of home mechanical ventilation where adult care has informed approaches to pediatric care and vice versa.
Video of 2018 Pfrommer Lecture by Douglas McKim, MD, FCCP Now Online
The 2018 Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation, "Saving Lives, One Ventilator at a Time… HMV in 2018… and beyond," by Douglas A. McKim, MD, FCCP, DABSM, is now available for viewing online. Dr. McKim is Professor of Medicine, University of Ottawa and Medical Director, CANVent Respiratory Services and The Ottawa Hospital Sleep Centre in Ottawa, Canada.
The video includes a brief historical perspective on HMV, Dr. McKim's personal introduction to HMV through patient stories as well as topics such as HMV in Canada, continuous NIV, LVR and MI-E research, weaning the ‘unweanable’ and suggestions about the future of HMV. Text of the lecture can be found in Ventilator-Assisted Living, Volume 33, Issues 5 and 6.
ADVOCACY
IVUN Urges Support of the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act
As we've detailed in previous issues of Ventilator-Assisted Living, the Centers for Medicare and Medicaid Services (CMS) intends to include non-invasive ventilators (NIV) in the next round of the competitive bidding program. On October 31st, Representatives Morgan Griffith (R-VA) and Peter Welch (D-VT) introduced the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019, which seeks to delay the inclusion of ventilators from the Medicare durable medical equipment competitive bidding program for five years, and establish a technical expert panel (TEP) to update the national coverage policies for home mechanical ventilator devices so that they reflect technological advancements and peer-reviewed science.
IVUN believes Congress should pass this legislation and urges our members to contact the congressional representatives to voice your support for this bill. If you don't know who your congressional representatives are or how to contact them, you can look up the information by entering your address here.
Other ways to support the SMART Act: The ALS Association has a template on their website whereby you can urge your congressional representative to cosponsor the bill. Simply go here, enter your address, and it will automatically generate a letter for to forward to your congressperson. You can even edit the letter before sending to tailor it to your personal situation or concerns.
Money Follows the Person Update
Disability Scoop reports that a bipartisan proposal in the U.S. Senate would reauthorize Money Follows the Person - the Medicaid program that provides services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.
Congress has passed a series of short-term extensions - the latest of which runs out this month - since Money Follows the Person officially expired in 2016.
Under the new plan, however, the program would have no end date and it would be funded at $450 million annually for the next 10 years. The proposal is tucked inside a larger bill known as the Prescription Drug Pricing Reduction Act of 2019.
Advocates had been pressing for a bill that would have renewed Money Follows the Person for five years, but they say that the permanent renewal that’s now on the table is even better. Though there was hope it would pass this month, early 2020 now appears more likely.
The ABLE Act at 5
December 19th marked the fifth anniversary of the passage of the Achieving a Better Life Experience Act (ABLE Act). The law allowed people with disabilities to set up so-called ABLE accounts. The accounts are intended to foster person-centered independence, build self-reliance, encourage employment and improve quality of life. Contributions to ABLE accounts can come from earnings, family, friends and other sources. Earnings on ABLE accounts are tax-deferred, and withdrawals are tax-free as long as they are used for qualified disability-related expenses.
Since the program launched in 2016, people with disabilities and their families have reportedly saved more than $300 million to help cover disability-related expenses in ABLE plans offered by 42 states and the District of Columbia.
While the program has undoubtedly helped some, it hasn't been an unmitigated success. Program participation has been lower than originally expected. A New York Times article earlier this year cited a National Disability Institute estimate that by mid-2021, the five-year anniversary of the first ABLE account, 450,000 accounts will be needed to ensure the program’s long-term viability.
An article entitled "How ABLE Accounts Fail Disabled People" published by the Center for Disability Rights examined other ways in which the act falls short of its intended goals - including age restrictions, negative impacts on eligibility for other benefit programs, and limited investment options.
NETWORKING
CCHS Research Forum Announced
The CCHS Network and Foundation will host a gathering of CCHS clinicians, researchers, device manufacturers, and Network leaders from around the world to examine the current state of CCHS research. This meeting's aim is to make connections and encouraging discourse among CCHS professionals. The meeting will take place September 24-26, 2020, at the Disney Yacht Club in Orlando Florida. More information about Forum Registration will be announced in early January.
Expanding COPD Care Through Patient Education
The American Association for Respiratory Homecare (AARC) recently published an article by Mike Hess, MPH, RRT, RPFT, a lung disease coordinator in Michigan. In the article, Hess shares his tips in looking beyond the basics when it comes to COPD patient education opportunities.
Race to End Duchenne
Registration is now open for the 2020 Bank of America Chicago Marathon Race to End Duchenne team. Next year's race is scheduled for Sunday, October 11, 2020. Be part of one of the most exciting marathons in the country while raising much-needed funds to help end Duchenne.
RECENT RELEVENT
PUBLICATIONS
Phil Porte, Executive Director, NAMDRC
NAMDRC legislative initiatives take shape
“HR 4945 bill was introduced on November 1, 2019. First, the proposed legislation would create a blanket exemption for home mechanical ventilation from competitive bidding. Second, it requires CMS to convene a technical expert panel to craft up-to-date policies for home mechanical ventilation.
“The political strategy here is slightly different. While passage of the bill is certainly our first choice, we believe that introduction of the bill is a red flag signal to CMS for the need to revise its coverage policies as those policies are the root cause of the growth of home mechanical ventilation outlays.”
CHEST Physician. 2019 Dec;14(12):32.
One-Year outcomes following tracheostomy for acute respiratory failure
Mehta AB, Walkey AJ, Curran-Everett D, Douglas IS.
“Long-term outcomes following tracheostomy are extremely poor with high mortality, morbidity, and healthcare resource utilization especially among older patients. Some subsets of younger patients may have better outcomes compared with the general tracheostomy population. Short-term acute care costs were extremely high in the first year following tracheostomy. If extended to the entire U.S. population, total short-term acute care hospital costs approach $11 billion dollars per year for tracheostomy-related to acute respiratory failure. These findings may aid families and surrogates in the decision-making process.”
Critical Care Medicine. 2019 Nov;47(11):1572-1581. doi: 10.1097/CCM.0000000000003959.
Preference of neuromuscular patients regarding equipment for daytime mouthpiece ventilation: A randomized crossover study
Toussaint M, Chatwin M, Verhulst S, Reychler G.
“Dedicated and non‐dedicated mouthpiece (MPV) equipment are deemed effective and comfortable. Individualization of arm support and mouthpiece is advised to ensure success of MPV. A ventilator free time lower than 6 hours seems to be a useful indicator to a priori set a backup rate rather than a rate at zero associated to the kiss trigger.”
The Clinical Respiratory Journal. 2019 Dec 4. doi: 10.1111/crj.13118. [Epub ahead of print]
Transitioning from an ICU ventilator to a portable home ventilator
Fierro JL, Panitch HB.
“There is a variety of portable ventilators on the market, each with its' own features. A clinician needs to understand the unique characteristics of the ventilators available in his or her region, as well as the nuances of primary and secondary settings for these portable home ventilators in order to create a comfortable breath that allows for adequate gas exchange for the patient. Understanding the interplay of the portable home ventilator and the ventilator circuit is also a key component of transitioning a patient to a portable home ventilator. This review details characteristics of some of the more commonly used machines in the United States, as well as the settings to be considered in supporting a child with chronic respiratory failure outside of the hospital. As more patients are being discharged from the hospital with mechanical home ventilation, new ventilators are being developed that expand upon features of current machines.”
Seminars in Fetal & Neonatal Medicine. 2019 Oct;24(5):101041. doi: 10.1016/j.siny.2019.101041.
EDUCATIONAL
OPPORTUNITIES
Canadian Respiratory Conference 2020
The Canadian Thoracic Society will host the 13th Annual Canadian Respiratory Conference in Niagara Falls, Ontario from April 16-18, 2020. Full details on sessions and speakers will be posted in January 2020. Online registration will open the week of January 13, 2020.
ATS 2020
The American Thoracic Society 2020 International Conference will be held May 15-20 in Philadelphia at the Pennsylvania Convention Center and Philadelphia Marriott Downtown. Get more info at https://conference.thoracic.org.
Parent Project Muscular Dystrophy 2020 Annual Conference
PPMD's annual conference will take place June 25-28, 2020 at the Phoenician Hotel in Scottsdale, Arizona. The conference brings together nearly 700 families from around the world to learn the latest progress in the fight to end Duchenne.
Focus 2020
FOCUS 2020 will take place in Memphis, Tennessee, Friday & Saturday, September 11 & 12, 2020 at The Guest House at Graceland Hotel. Watch https://foocus.com for more information as it becomes available.
CHEST 2020
CHEST is now accepting submissions for abstracts and case reports that will be presented at CHEST Annual Meeting 2020 in Chicago, Illinois, October 17-21. Accepted abstracts and case reports will appear in an online supplement to the journal CHEST. Submit by March 31, 2021.
INDUSTRY
Ventec Announces First Comprehensive Reporting Solution for Ventilator-Dependent Patients
Ventec Life Systems's VOCSN Multi-View is the first and only system to provide complete patient trending and monitoring for ventilator-dependent patients across multiple respiratory therapies including ventilation, oxygen, cough, suction, and nebulization and additional patient monitors. Building on the integrated multi-therapy delivery of VOCSN, Multi-View is designed to summarize patient data and create trend reports to facilitate actionable and informed treatment decisions and care plans, drive proactive interventions, control costs, and deliver seamless care across providers from hospital to home. The streamlined information is designed to provide decision makers a comprehensive picture of the patient’s respiratory wellbeing.
“VOCSN is the only system to deliver integrated respiratory care and Multi-View now provides relevant data for caregivers to make informed treatment decisions in a way that's never been possible,” said Chris Kiple, Chief Executive Officer of Ventec Life Systems. “Integrated Reporting opens a new chapter in respiratory care that we believe will lead to customized patient treatment plans, better health outcomes, and more cost-effective patient care.”