INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 33, NUMBER 4
Michelle Cao, DO
The respiratory evaluation and management of neuromuscular disease is challenging. From early recognition of respiratory impairment, to implementation of respiratory support, to managing complications of neuromuscular respiratory weakness including sialorrhea, vocal cord impairment, ineffective airway clearance – all must be addressed with appropriate timing and individualized to each patient...............................................................................................MORE
International Ventilator Users Network is pleased to announce that we have entered into an agreement with the University of Massachusetts Amherst whereby UMass Amherst has agreed to add the archives of Post-Polio Health International, of which IVUN is a part, to its special collections. The agreement will ensure that material in our archives—collected over several decades dating back to the 1950s—will be preserved and made available for future use................................MORE
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Vol. 33, No. 4, August 2019
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
The Changing Landscape of Respiratory Management of Neuromuscular Disease
by Michelle Cao, DO
The respiratory evaluation and management of neuromuscular disease is challenging. From early recognition of respiratory impairment, to implementation of respiratory support, to managing complications of neuromuscular respiratory weakness including sialorrhea, vocal cord impairment, ineffective airway clearance – all must be addressed with appropriate timing and individualized to each patient.
As a member of the Stanford Neuromuscular Medicine Multidisciplinary program, I have the unique opportunity to provide respiratory care for many patients across the spectrum of neuromuscular disease. With a background in pulmonology, critical care, and sleep medicine – this particular specialty seems to fit naturally for me. This unofficial sub-specialty of pulmonology focusing on neuromuscular medicine, also largely unrecognized and underappreciated, is an unmet need for a growing population of neuromuscular patients.
With advances in noninvasive ventilation and novel pharmacologic therapies – neuromuscular patients are living well past expected lifespan. Noninvasive positive pressure ventilation (NIPPV) became available in the early 1980s. One of the greatest success stories of NIPPV was demonstrated in Duchenne Muscular Dystrophy and ALS with significant improvements in mortality and quality of life. Its application in the hospital setting for acute hypercapnic respiratory failure is well established. However, the great benefits of NIPPV in the home setting (i.e. home mechanical ventilation) are still unrecognized in many parts of the country and the world, and even at a local level.
Technological advances in NIPPV including improvements in size, portability and comfort have significantly increased treatment adherence and success. New models of respiratory assist devices and home ventilators offer individualized ventilatory modes designed for specific chronic respiratory failure conditions (e.g. volume assured pressure support) over traditional modes.
“Sip ventilation,” for example, is a unique daytime ventilatory mode that paved the way for patients to be able to use NIPPV during the day without having to be stationary or confined to bed. Sip ventilation has been shown to stabilize respiratory function and prevent or delay tracheostomy for years, as well as preserved orofacial musculature for speech and swallowing. In addition, contemporary devices allow remote monitoring of patients' ventilatory status with use of cloud-based technology, along with monitoring of oxygen and carbon dioxide levels in the home setting.
The complexities and challenges of home mechanical ventilatory support require expertise in pulmonology and sleep medicine beyond what is taught in a traditional training curriculum. This highly specialized field of respiratory medicine, often unofficially referred to as “neuromuscular pulmonology,” is an unfulfilled need in most medical communities. There is a growing need for an advanced, specialized model of ambulatory care delivery for this patient population. This model includes pulmonologists/sleep specialists and respiratory therapists as part of the multidisciplinary team who can provide expert knowledge and management of respiratory care in an outpatient setting in order to optimize the delivery of complex care to neuromuscular patients. This model may also result in a reduction of unnecessary emergency room, hospital, intensive care unit admissions and readmissions, as well as improvements in quality of life and survival rates.
Michelle Cao, DO, is Clinical Associate Professor, Division of Neuromuscular Medicine & Division of Sleep Medicine at Stanford University.
IVUN's Archives to be Permanently Housed at UMass Amherst
International Ventilator Users Network is pleased to announce that we have entered into an agreement with the University of Massachusetts Amherst whereby UMass Amherst has agreed to add the archives of Post-Polio Health International, of which IVUN is a part, to its special collections. The agreement will ensure that material in our archives—collected over several decades dating back to the 1950s—will be preserved and made available for future use.
As PHI Vice President Dan Wilson, who spearheaded the effort, describes, “The PHI archives will join a fine disability collection at the University of Massachusetts’ Special Collections and University Archives. The University of Massachusetts will preserve and digitize our archives, making them available online to polio survivors, ventilator users and researchers worldwide.”
UMass Amherst currently has twenty-five collections related to various disability issues. To browse their current holdings, click here.
In the coming months, PHI will begin the process of organizing and selecting appropriate materials from our archives for preservation. When this process is completed, the materials will be sent to UMass Amherst, where they will begin the digitization process. PHI will post a notification in our publications when the material become available online.
Some of these items are already available on our Polio Place website. On our PHI collections section, we have a page with digitized selections chosen from our IVUN-related materials dating as far back as 1944.
CMS Releases More Details on Electronic Visit Verification
The Centers for Medicare and Medicaid Services (CMS) released a bulletin this month offering more details on the new electronic visit verification, or EVV, mandate set to go into effect in January of 2020. EVV is part of the 21st Century Cures Act passed in 2016 and is intended to reduce fraud.
The bulletin includes information about whether the mandate will apply to beneficiaries with live-in caregivers (it won't), services rendered partially in the home, and to the provision of medical supplies, equipment and appliances as part of the Medicaid home health benefit.
Back in March, Kendra Scalia, a disability and healthcare policy analyst and user of noninvasive ventilation, wrote a guest blog post for the Disability Visibility Project on the new EVV policy. Scalia details a host of concerns regarding its implementation, not the least of which involve concerns about privacy protections. Read the full post here.
Money Follows the Person Receives Additional Funding
Legislation signed this month will allot another $122.5 million for Money Follows the Person. The Medicaid program provides states with funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.
This was the third time this year that the program required new funding to continue providing services. The latest action will keep the program running through the end of the year. However, because of the uncertainty surrounding funding, advocates say the program is operating in a weakened fashion, with many places focusing on completing transitions already in progress rather that initiating new ones.
States have received roughly $3.7 billion to help more than 88,000 people leave institutions through Money Follows the Person since 2006.
Medical Abuse Hotline Launched to Honor Carrie Ann Lucas
In March, IVUN announced the tragic death of prominent disability rights activist and ventilator user Carrie Ann Lucas. Those close to her claim her death was brought on in part because of UnitedHealthcare's refusal to pay for a specific inhaled antibiotic that she really needed.
Now, the organization Health Justice Commons has announced its intention to launch a medical abuse hotline in her honor. According to HJC, the intent of the hotline will be to "expose how common medical abuse truly is, hold health insurers and institutions accountable, and create real system-wide solutions." They are encouraging anyone who has survived medical abuse, the denial of medication, medical equipment or care to contact them.
New Survey for the ADA's 30th Anniversary
Next year marks the 30th anniversary of the Americans with Disabilities Act. You can help kick things off by completing the ADA Impact 2020 Survey. The survey is open to people with personal and/or professional experience in disability issues.
The information gathered will be used to understand what aspects of society have become more accessible due to the ADA; understand what areas still require further investigation and proposed solutions; and develop and improve the information, support, and guidance needed to help further the goals of the ADA.
NARIC, the National Rehabilitation Information Center, collected some of the disability community's celebrations, reflections, events, and remembrances from last month's 29th anniversary on their blog post.
How to Get Financial Compensation thru Medicaid for Providing Care to a Loved One
According to Family Caregiver Alliance (FCA), nearly 80% of adults who live at home and receive long-term care assistance depend solely on relatives and friends. The responsibility frequently falls to a spouse, parent, or adult child and oftentimes is unpaid.
However, these informal caregivers may be qualified to receive some compensation from Medicaid. Each of the 50 states, as well as the District of Columbia, offer some type of consumer directed personal care assistance program via Medicaid. Find out more on eParent.com.
New Survey for Health Professionals Regarding Mouthpiece Ventilation
A new survey is available for healthcare professionals with clinical and/or academic experience in the care of patients with neuromuscular disorders. The survey concerns the use of mouthpiece ventilation (MPV) as a ventilatory option for patients with neuromuscular disorders and aims to register the current practice of MPV in neuromuscular disorders (NMDs) in centers that have both clinical and academic experience in respiratory care of this patient population.
The purpose of the survey is to gather information around current practice i.e. which countries/regions/type of hospital utilise MPV well, to identify the preferred mode and aim of MPV delivery and identify any other perceived barriers to MPV. The data collected in this survey will be anonymized and analyzed by a group of specialists and the results will be presented during a Workshop of the European Neuromuscular Centre (ENMC) in March 2020. The survey will take around 10 minutes to complete. This invitation comes courtesy of Miguel Gonclaves, Michelle Chatwin, Jesus Gonzalez-Bermejo and Michel Toussaint.
Ackrivo J, Hansen-Flaschen J, Jones BL, Wileyto EP, Schwab RJ, Elman L, Kawut SM.
Classifying Amyotrophic Lateral Sclerosis Patients by Changes in Forced Vital Capacity: A Group-Based Trajectory Analysis
“A model for stratifying progression of respiratory muscle weakness in amyotrophic lateral sclerosis (ALS) would identify disease mechanisms and phenotypes suitable for future investigations. This study sought to categorize progression of forced vital capacity (FVC) after presentation to an outpatient ALS clinic.”
American Journal of Respiratory and Critical Care Medicine. 2019 Jul 19. [Epub ahead of print].
Home-based mechanical ventilation and neuromuscular disease: Pressures of competitive bidding process
Jeanette Brown, MD, PhD
“Ventilator-dependent patients should not be subjected to the pressures of CBP when trying to obtain the equipment, supplies, and access to experienced medical providers that are necessary to remain in their homes. Beyond denying ventilatory support to some, CBP may also result in other unintended consequences, including the increased use of otherwise avoidable tracheostomies to ensure coverage for appropriate services. CHEST, including the Home-Based Mechanical Ventilation and Neuromuscular Disease NetWork and other patient groups, has advocated that home mechanical ventilators should be permanently excluded from the CBP to protect these fragile and vulnerable patients.”
CHEST Physician. 2019 Jul 11. Full article.
COPD Patients With Acute Exacerbations Should Receive Noninvasive Ventilation Regardless of Certain Characteristics, Study Suggests
Joana Carvalho, MSC
“Patients with chronic obstructive pulmonary disease (COPD) who are experiencing severe exacerbations should receive noninvasive ventilation, regardless of factors such as older age, low body mass index (BMI), left heart dysfunction, and abnormal levels of gases in the blood, a study suggests.”
COPD News Today. 2019 Aug 27. Full article.
A second conference will take place in 2019 at the Poughkeepsie Grand Hotel in Poughkeepsie, New York on Wednesday, October 2nd, 2019. This well-established conference will be celebrating its 40th anniversary and is one of the longest continuously running Respiratory Care & Sleep Medicine conferences in the country.
Date: Saturday, September 7, 2019 8:00am-4:30pm
Location: Children’s Healthcare of Atlanta Office Park, Atlanta, Georgia
Date: Saturday, September 21, 2019, 8:00am-4:30pm
Location: Texas Health Harris Hospital Resources University, Fort Worth, Texas
Dates: October 24-25, 2019
Location: UC Davis Health, Sacramento, California
ERS International Congress 2019
The European Respiratory Society will hold their 2019 International Congress in Madrid, Spain, September 28 - October 2, 2019. The programme for the meeting has been posted. Additional details and early registration are available on the Congress webpage.
October 19-23, 2019, New Orleans, Louisiana. The CHEST 2019 Annual Meeting will offer more than 400 general sessions, postgraduate courses, interdisciplinary sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
Monday, October 21, 3:15 - 4:15 pm
Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
Howard Panitch, MD, FCCP
This award, established in 1999 by Dr. Eveline Faure and Dr. Allen I. Goldberg, honors their lifelong colleague and friend, Margaret Pfrommer, a polio survivor and patient advocate. It is awarded to a clinician or ventilator-dependent professional or advocate who has advanced mechanical ventilation and fostered partnerships between physicians and patients.
AARC Congress 2019
AARC Congress 2019 will be held November 9–12, 2019, in New Orleans, Louisiana. Highlights from the recent 2018 Congress can be found on their website.
Ventec Life Systems Partners with The ALS Association
The ALS Association announced last week that Ventec Life Systems has committed to the development and launch of comprehensive respiratory care educational resources to help people living with ALS and their caregivers make informed decisions about their health.
In addition to developing a comprehensive respiratory education program, Ventec and The ALS Association will provide ongoing education about integrated respiratory care including the recent ALS Association Care Services webinar, which reviewed the way integrated respiratory care can positively impact ALS treatment.