INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VOLUME 35, NUMBER 2
Joshua O. Benditt, MD, FCCP
The COVID-19 pandemic has challenged patients and healthcare providers alike in so many ways. From the isolation of quarantining at home for many people to trying to manage patients with massively strained resources, the pandemic has forced a need for creative ways to continue caring for our ventilator users with neuromuscular and other diseases. One of these creative solutions has been virtual medicine, which includes telemedicine, telephone visits and monitoring in the home. Telemedicine, in particular, has grown exponentially during the last year plus with COVID-19.........................................................................MORE
Though many camps have cancelled their summer programs for ventilator-assisted children this year, some have switched to virtual or postponed theirs with the hope of holding it in the fall. IVUN has the details.............................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
The business of living with a ventilator
Vol. 35, No. 2, April 2021
Editor: Brian Tiburzi
Designer: Brian Tiburzi
© 2021 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.
Telemedicine for Patients with Neuromuscular Respiratory Disease and Home Ventilation during the COVID-19 Pandemic
Joshua O. Benditt, MD, FCCP
A CLINICAL STORY
One morning, early in the spring of 2020, I entered the electronic medical record of someone that I care for in my clinic with Spinal Muscular Atrophy Type 2 and hit the “Connect with Zoom” button chart. Twenty seconds later her face appeared virtually and NOT in person for the first time since I had met her 10 years ago. She appeared well and her history supported that. We spent most of the time reviewing recent events and surveying her home ventilation equipment. She felt well and sleep was of good quality. She was performing her normal activities without shortness of breath. Her mechanical insufflator-exsufflator was working fine although she used it only as needed and she was performing lung volume recruitment (LVR) maneuvers with a resuscitator bag three times a day with assistance. Her mask for nocturnal NPPV was getting old and she showed me where the straps were fraying. We noted that her bilevel device was now eight years old and that she needed a new one. We concluded our conversation in 20 minutes, and she blurted out, “Wow, that was easy. Thanks, Dr. Benditt.” I got off the phone and put in the order for a new mask and bilevel device with our clinic respiratory therapist. She received the equipment 48 hours later and sent an electronic message through her Epic chart to let me know it had arrived.
The COVID-19 pandemic has challenged patients and healthcare providers alike in so many ways. From the isolation of quarantining at home for many people to trying to manage patients with massively strained resources, the pandemic has forced a need for creative ways to continue caring for our ventilator users with neuromuscular and other diseases. One of these creative solutions has been virtual medicine, which includes telemedicine, telephone visits and monitoring in the home. Telemedicine, in particular, has grown exponentially during the last year plus with COVID-19.
This explosive growth of telemedicine implementation has occurred around the country and world during the COVID-19 pandemic (Olayiwola JN et al. JMIR Public Health Surveill 2020). This recent growth of telemedicine in the US has been fueled by the need for social distancing and quarantine, the lack of universal testing and COVID-19 case tracking and the realization by the Center for Medicare and Medicaid Services (CMS) that coverage of telemedicine services had to be expanded rapidly to allow for continued patient care in the setting of stay-at-home orders (https://www.cms.gov/newsroom/fact-sheets/medicare-telemedicine-health-care-provider-fact-sheet).
For those that use a ventilator due to neuromuscular or other causes, telemedicine is a technology that may be particularly attractive for a number of reasons. Firstly, individuals with neuromuscular respiratory issues (or pulmonary problems) are likely at a particularly high risk of complications if they develop full-blown COVID-19 infection. Development of acute respiratory distress syndrome (ARDS) due to SARS-CoV-2 (the organism responsible for the pandemic) on top of underlying neuromuscular respiratory failure is likely to be particularly serious although, very fortunately, there are no published reports of widespread infections in patients with neuromuscular respiratory disease.
Secondly, ventilator users may find it quite difficult to come to the hospital for clinic visits, even during “normal times.” Mobilizing equipment, caregivers and transportation can take days to arrange. For this reason, many neuromuscular clinics provide a multidisciplinary/multi-provider half-day visit to reduce the need to come into the hospital for multiple separate visits.
Lastly, there are relatively few respiratory healthcare providers in the United States and around the world that focus on individuals using home ventilation and neuromuscular respiratory disease. Many neuromuscular clinics and providers will therefore have a very wide patient catchment area. For instance, my practice, based in Seattle, Washington, includes patients from Alaska, Montana, Idaho and Wyoming. In person hospital visits more than once per year may be virtually impossible. Thus, the ability to perform “virtual” clinic visits is particularly appealing for geographically distanced patients.
This is not to say that there are not hurdles to the application of telehealth for ventilator users with neuromuscular or other diseases. Not everyone has the equipment nor technical knowledge to participate in virtual visits and not all insurers cover these visits even now during COVID-19. In addition, insurers are still considering how to cover telehealth virtual visits long term.
However, I imagine a future where a significant number of visits for individuals with neuromuscular respiratory and home ventilation needs could be performed virtually. I envision that this would reduce patient and home caregiver travel burdens, make more efficient use of healthcare provider time, expand the number of patients that a neuromuscular respiratory disease/home ventilation practitioner could serve and perhaps reduce healthcare expenditures per patient. This may be a real healthcare bright spot brought to light in the enormous difficulties of COVID-19 pandemic.
Joshua O. Benditt, MD, FCCP, is Medical Director of Respiratory Care Services, Medical Director of the Northwest Assisted-Breathing Center and Professor of Medicine, University of Washington Medical Center, Seattle, Washington.
Though many summer camps for children on HMV have once again been forced to cancel their summer programs due to the ongoing pandemic, a few have announced alternative plans, deciding to hold virtual camps or postponing them until later in the year. Below are the latest updates for these camps, though we caution that things remain fluid so be sure to check their website or Facebook pages for the latest updates. Camps not listed currently have no plans to hold activities for campers this year.
Camp Inspiration is a family program in Lake Luzerne, New York, for children (ages 5-21 years old) who are BIPAP or ventilator dependent., Lake Luzerne, New York. At this time, their goal is to offer Camp Inspiration programming in Fall 2021, but no details are available yet.
CHAMP Camp 2021 will take place virtually this year. For more information please contact firstname.lastname@example.org.
FRESH AIR CAMP
Though not meeting in person, campers will be sent supplies for six activities to work on during the week of camp, June 7-12, with the plan to use social media to build interest and enthusiasm.
They are hoping to hold a fall reunion live in an outside venue – if feasible based on the trend with COVID-19 and Ohio restrictions.
PA VENT CAMP
PA Vent Camp will be held virtually this year from June 27 - July 1. More information is available at the link above or by contacting 717-531-5338 or email@example.com.
Kaiser Family Foundation Outlines Potential Impact on HCBS from American Jobs Plan
The Biden Administration recently proposed spending $400 billion over eight years on home and community-based services (HCBS) as part of its $2 trillion infrastructure plan. Though short on specifics, the plan's stated aims include expanding access to home and community-based services and extending the longstanding Money Follows the Person (MFP) program that supports innovations in the delivery of long-term care. The administration hopes these investments will speed up wait times for HCBS that older Americans and those with disabilities desperately need while creating new jobs and offering caregiving workers a long-overdue raise.
A new Kaiser Family Foundation (KFF) article looks at the potential impact these funds could have on Medicaid Home and Community-Based Services, as outlined below.
Currently, 57% of Medicaid’s long-term care budget goes to home and community-based services — expected to be about $114 billion in 2021. Still, 41 states have waiting lists totaling nearly 820,000 people. The average wait time is three years.
As the article points out, "a number of questions remain to be answered as the American Jobs Plan is further developed. For example, to what extent would the new funds be spent directly federally, or directed to states? Would they be allocated to states through an increase in the federal matching rate or as grant dollars or another mechanism? It also is not yet known whether states would be required to maintain or increase their current level of HCBS spending to qualify for the new funds. Finally, many details around specific policy proposals and the impact of increased funds on access to HCBS through an expansion in the workforce and better wages, more people served, and/or new benefits remain to be determined."
Bipartisan Telehealth Modernization Act Aims to Increase Access to Telehealth Services
Senators Tim Scott (R-SC), Brian Schatz (D-HI), and Jeanne Shaheen (D-NH) have introduced the bipartisan Telehealth Modernization Act that would update coverage restrictions that have long prevented life-saving telehealth services for many of the nation’s roughly 61 million Medicare beneficiaries.
The Telehealth Modernization Act seeks to ensure that patients can access telehealth anywhere by permanently removing Medicare’s so-called "geographic and originating site" restrictions, which required both that the patient live in a rural area and use telehealth at a doctor’s office or certain other clinical sites. It would also give Health and Human Services new authority to do these three things:
• Help patients continue to access telehealth from physical therapists, speech language pathologists, and other health care providers.
• Help give Medicare recipients many more telehealth services.
• Help Medicare hospice and home dialysis patients use telehealth to keep receiving necessary care.
ALS Association Backs Access to Telehealth Services
In March, the ALS Association submitted written testimony to the House Energy and Commerce Committee on why telehealth is important to all people living with ALS, now and after the pandemic – both for medical care and increasing opportunities to participate in clinical trials.
The ALS Association believes that while the temporary expansion of telehealth during the pandemic has been beneficial to most people, those with ALS have particularly benefited from expanded access to multidisciplinary care across state lines in a way that was not possible before COVID, improving both their quality of life and life expectancy.
PPMD Safety Preparedness Toolkit
Parent Project Muscular Dystrophy has put together a toolkit to make sure your family is prepared for the next “big one,” whether it be a viral outbreak, natural disaster, or unexpected weather. Explore their Safety Preparedness Toolkit for information and resources to help you develop an emergency plan for your family.
CCHS Call For Reasearch 2021
The Congenital Central Hypoventilation Syndrome (CCHS) Network and CCHS Foundation have announced their 2021 Research Grant Award Cycle. The CCHS Grant Award represents a collaborative effort between the CCHS Network and the CCHS Foundation to encourage and support basic, clinical, translational, or epidemiological research to impact the lives of patients with CCHS.
Focus areas include investigations related to the CCHS young adult population, development of innovative technology or treatment modalities, and basic/translational research in CCHS biology. The application deadline is July 31, 2021 at 5pm CDT. More information about the grants is available on their website.
A virtual care innovation for home mechanical ventilation
Amin R, Pizzuti R, Buchanan F, Rose L.
“The COVID-19 pandemic has changed the landscape of clinical medicine and health service delivery. As such, we anticipate that virtual care will remain an integral component of the clinical toolkit for the HMV population. Our lessons learned from the LIVE [Long-Term In-Home Ventilator Engagement] program clinical rollout and our randomized controlled trial (commencing recruitment in early 2021) can be leveraged to support a national scale-up and evaluation of virtual care for patients using HMV. In addition, opportunities exist to support integration with the electronic health record and to translate the provincial experience of the LIVE program to other complex and vulnerable patient populations living in the community, as well as in long-term care.”
Canadian Medical Association Journal. 2021 Apr 26;193(17):E607-E611. doi: 10.1503/cmaj.202584.
Rahman M, Jeffries J, Massie J.
A narrative review of the experience and decision-making for children on home mechanical ventilation
“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 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.”
J Paediatr Child Health. 2021 Apr 21. doi: 10.1111/jpc.15506.
Misra AR, Oermann MH, Teague MS, Ledbetter LS.
An Evaluation of Websites Offering Caregiver Education for Tracheostomy and Home Mechanical Ventilation
“Parental and familial caregivers of a child with a tracheostomy, and possibly home mechanical ventilation (HMV), face the overwhelming task of learning to medically care for their child prior to discharge. Caregivers may cope by seeking health information on the Internet. This is concerning because information found during an Internet search may not be accurate, comprehensive, or up to date. The purpose of this project was to evaluate the quality and content of websites offering information about tracheostomies and HMV using a valid assessment tool.”
J Pediatr Nurs. 2021 Jan-Feb;56:64-69. doi: 10.1016/j.pedn.2020.09.014.
AARC Summer Forum 2021
The American Association for Respiratory Care (AARC) will hold a virtual Summer Forum on June 29, July 1, 7, & 9. Spread across four days, Summer Forum LIVE! includes 22 sessions that include lectures, symposiums for Leadership and Educators. Summer Forum LIVE! also offers added networking through session conversation, Feel Good Activity Breaks, a Virtual Expo Hall, and Zoom Wrap-Up Chats with Colleagues. Find out more and register online.
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. Registration opens May 10.
CHEST 2021 will be both an in-person and a livestreamed event. It will take place October 17-20, 2021, online and in Orlando, Florida. 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.
Resources for Caregivers of Trilogy Evo Users
Did you know? Philips has free online resources for caregivers of Trilogy Evo users. These include a Trilogy Evo Quick Start Guide for caregivers with step by step instructions, a Trilogy Evo Module for Caregivers with basics on how to use your Trilogy Evo ventilator, and a Caregiver Training Checklist. For these resources and more, see Philips's Trilogy Evo e-Learning Curriculum.