INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 34, NUMBER 2
With coronavirus infections now widespread, IVUN has received numerous inquiries from our members seeking advice and guidance. We realize this may be a worrying time, as many of you are at high risk for serious complications from COVID-19. Of paramount importance is taking the necessary precautions to reduce your risk of contracting SARS-CoV-2. But what advice is there for users of home ventilators specifically? ....................................................................MORE
Citing the ongoing pandemic, the Centers for Medicare & Medicaid Services (CMS) announced that it is removing the non-invasive ventilators (NIV) from Round 2021 of the Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS) Competitive Bidding Program. IVUN has previously detailed CMS’s plan to add non-invasive ventilators to the next round of its Competitive Bidding Program........................................................................................MORE
Educate, discuss, take action
Sharing the work of others
Conferences and webinars for health professionals and ventilator users
The business of living with a ventilator
Vol. 34, No. 2, April 2020
Editor: Brian Tiburzi
Designer: Brian Tiburzi
© 2020 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
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With coronavirus infections now widespread, IVUN has received numerous inquiries from our members seeking advice and guidance. We realize this may be a worrying time, as many of you are at high risk for serious complications from COVID-19. Of paramount importance is taking the necessary precautions to reduce your risk of contracting SARS-CoV-2. IVUN recommends following the CDC guidelines to limit your exposure to the virus to the greatest extent possible. Among the steps they recommend:
Stay home if possible.
Wash your hands often.
Take everyday precautions to keep space between yourself and others (stay 6 feet away, which is about two arm lengths).
Keep away from people who are sick.
Stock up on supplies.
Clean and disinfect frequently touched services.
Call your healthcare professional if you have concerns about COVID-19 and your underlying condition or if you are sick.
It’s important that if you have a caregiver or have people come into your home to provide services that they, too, follow the recommended guidelines, including wearing a mask.
The CHEST Foundation has published an excellent guide specifically for users of home mechanical ventilation, "COVID-19 Resources: Care Recommendations for Home‑Based Ventilation Patients." The guide was created by Michelle Cao, DO, FCCP, Division of Neuromuscular Medicine & Division of Sleep Medicine, Stanford University, Sherri Katz, MD, FCCP, Division of Pediatric Respirology, Department of Pediatrics, University of Ottawa, and Lisa Wolfe, MD, FCCP, Division of Pulmonary and Critical Care, Department of Medicine, Northwestern University.
The guide includes advice on how to limit the spread of infectious particles, care for your ventilator, protect caregivers and family members, and prevent secondary infections. Most importantly, it offers advice on what to do should you need to go to the hospital, either for COVID-19 or an unrelated issue.
Below are some of their key recommendations:
Limiting the spread of infectious particles
Use a well fitted full-face mask (covering nose and mouth).
Add an additional combined bacterial/viral (hepa) filter between the mask and device tubing (non-vented mask ➞ filter ➞ CO2 exhalation port on tubing device).
Device humidifier needs to be off.
Or, place a mask over the CO2 exhalation port of your mask (if you are using a vented mask). Caution will need to be exercised to ensure the mask does not stick to the exhalation port of the mask and occlude it, as this would cause CO2 retention.
Or, change tubing to a closed system with a double lumen tube and nonvented full-face mask for compatible home ventilators (eg, Philips Evo, ResMed Astral, VOCSN).
Need to discuss with your DME provider for set up of above options.
Caring for your disposable ventilation device
Mask interface – Leaking from your mask can be a significant source of infection. Consider cleaning your mask daily with a cleaning wipe (mask cushions made from foam cannot be exposed to water and should not be used when sick).
Hoses – Clean your hoses with sterilizing solution (eg, sodium hypochlorite solution of 0.1% or 1000 ppm) every other day. This could be done with commercial solutions (ie, Control III Disinfectant) or by using a 50% hydrogen peroxide solution.
Humidity chambers – Place fresh water into the chamber daily (distilled, bottled, or boiled). Clean the chamber and the hose every other day.
Filters – Consider adding an additional viral/bacterial filter in-line with the device (see above). These filters help to reduce droplets and spread of infection to caregivers. (filters can be obtained from on-line sources but are likely available from your DME provider). You should change the filter every 3 days while sick.
What your family and caregivers need to know
Space is needed for isolation while using NIPPV – NIPPV is known to spread infectious particles, especially with poorly fitted masks. Full face masks covering nose and mouth limit spread but may necessitate additional monitoring by caregivers in young children and/or those who cannot remove the mask by themselves. Well-fitting masks are best for limiting spread. Allow at least 3 feet of space for isolation.
The guide has additional recommendation for those who have a tracheostomy or who use a suction device.
If you need to go to the hospital
If at all possible, the CHEST Foundation guide recommends avoiding the hospital. But what if, after taking all of these precautions, you find yourself needing to go to the hospital (either for suspected COVID-19 or another unrelated reason). Here are some of their key recommendations:
Contact your pulmonologist. You should be aware that if you are admitted to the hospital, you may not be able to use noninvasive ventilation.
Home ventilation devices – Bring ALL of your home devices as the hospital may not have what you are used to and they may be out of devices. Some hospitals will not allow use of home equipment, but it is a safe precaution to bring them.
Know your settings (ask your provider to give you a one-page list that includes your PAP device/home ventilator settings, cough assist, suction, nebulizer therapy).
Confer with the hospital medical providers on options:
Convert the NIPPV device tubing/mask circuitry into a closed system, which is a double-lumen tube with a nonvented full-face mask. This will limit risk of infectious particle spread to the surrounding. (New home ventilators are capable of double-lumen tubing (eg, Philips Evo, ResMed Astral, VOCSN).
Add a combined bacterial/viral filter between the mask and device tubing to reduce particle spread (nonvented mask ➞ filter ➞ CO2 exhalation port on tubing ➞ device).
Know your medication regimen.
Know your airway clearance regimen.
Limit cough assist and nebulizer therapy to as needed.
Operator will need to wear personal protective equipment (PPE).
Go to IVUN’s “Take Charge, Not Chances” and fill out the following:
Home Ventilator User’s Emergency Preparation Checklist
Caregiver’s Emergency Preparation Checklist
Patient’s Vital Information for Medical Staff
Treating Neuromuscular Patients Who Use Home Mechanical Ventilation: Critical Issues
Advocate for frequent and scheduled airway clearance. Bring your home devices (cough assist, therapy vest, etc). You may need to have your caregivers give you the airway clearance treatments as the hospital may only have basic suction available.
Challenges around the use of oxygen – If you have chronic respiratory failure causing CO2 retention, the use of supplemental oxygen can be risky, causing steep escalation in blood carbon dioxide (CO2) levels. You may have been instructed that you should never be treated with oxygen. You should be aware that in the setting of infectious pneumonia – you may need oxygen in order to maintain adequate oxygen saturation with noninvasive ventilation. As long as oxygen is delivered through your positive airway pressure (PAP) device or ventilator – you will be protected as the CO2 will be washed out by your PAP device/ventilator.
Patients supported on home NIPPV infected with COVID19 will need both NIPPV and oxygen.
For patients who are severely ill or showing signs of deterioration, intubation and mechanical ventilation may be required.
The CHEST Foundation has also created a quick infographic summarizing the most important information from above.
Citing the ongoing pandemic, the Centers for Medicare & Medicaid Services (CMS) announced that it is removing non-invasive ventilators (NIV) from Round 2021 of the Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS) Competitive Bidding Program. IVUN detailed CMS’s plan to add non-invasive ventilators to the next round of its Competitive Bidding Program in earlier articles (“CMS to Add Non-Invasive Ventilators to Competitive Bidding Program for Round 2021”; “CMS Responds to Request to Exclude Non-invasive Ventilators from Competitive Bidding”).
In its April 9th notice, CMS explained its decision was “due to the novel COVID-19 pandemic, the President’s exercise of the Defense Production Act, public concern regarding access to ventilators, and the NIV product category being new to the DMEPOS Competitive Bidding Program.” Removing non-invasive ventilators from competitive bidding allows any Medicare-enrolled durable medical equipment supplier to provide any type of ventilator covered under Medicare.
CMS had originally announced in March of 2019 that non-invasive ventilators would be added to Round 2021 of the competitive bidding program. That decision drew protests from manufacturers, industry groups, and advocacy organizations who worried about the adverse effects this would have on those requiring home mechanical ventilation. IVUN joined 18 other patient and pulmonary organizations in a letter sent to Alex Azar, Secretary of the Department of Health and Human Services, and CMS Administrator Seema Verma detailing our objection to the decision to add non-invasive ventilators to competitive bidding. [Read the full letter.] CMS remained unconvinced.
In a last-ditch effort to reverse the decision, NAMDRC (The National Association for Medical Direction of Respiratory Care) stepped-up their efforts at supporting new legislation to block the addition of NIV to the program. In the end, it took nothing short of a deadly global pandemic to force CMS to back off. IVUN will continue to monitor the situation and work to prevent the addition of non-invasive ventilators to future rounds.
Disability No Reason To Deny COVID-19 Care Says Trump Administration
As the coronavirus pandemic began to accelerate last month, the Department of Health and Human Services warned states and health care providers not to discriminate on the basis of disability. “As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities,” they cautioned.
The guidance was prompted by the fear that overwhelmed hospital systems might be forced to ration care, particularly access to mechanical ventilation. IVUN was contacted by advocates in Kansas, New York and elsewhere who claimed that their state's plan could potentially deny life-saving care to people with disabilities.
Roger Severino, director of the HHS Office for Civil Rights, stressed, “Persons with disabilities, with limited English skills and older persons should not be put at the end of the line for health care during emergencies.”
Still, some groups remain concerned. The American Association of People with Disabilities, the Autism Society, the National Disability Rights Network and hundreds of other aging, disability and patient organizations sent a letter to Severino and HHS Secretary Alex Azar calling on them to issue additional guidance to ensure that schemes to ration scarce health care resources during the COVID-19 pandemic comply with federal nondiscrimination laws.
Senate Passes Bill to Expand Respite Care
The U.S. Senate unanimously approved a bill in February known as the Lifespan Respite Care Reauthorization Act of 2019 which would authorize $50 million over the next five years for the Lifespan Respite Care Program, a system of community-based respite care services across the country.
Backers of the bill note that there are an estimated 45 million family caregivers in the U.S. providing some $470 billion annually in uncompensated care. Most have not used any respite care services at all. The bill would quadruple annual spending for respite care under the existing law.
The Senate bill will have to be reconciled with a similar bill that passed the House before it can be signed by the president.
CHEST Acquires NAMDRC
The American College of Chest Physicians (CHEST) and the National Association for Medical Direction of Respiratory Care (NAMDRC) have mutually agreed to join efforts by integrating NAMDRC activities and operations into CHEST.
CHEST explained the decision in a statement posted on its website. "CHEST has a deep history of patient-centric advocacy. It is our responsibility to our members and patients to remain focused on advocacy efforts to advance patient care and end lung disease. The acquisition of NAMDRC will strengthen and fortify CHEST’s presence in the public policy and advocacy arena, while also providing CHEST with a physical presence in Washington, D.C."
The Health Policy and Advocacy Committee, comprising an equal selection of CHEST and NAMDRC leadership, has been created to help CHEST in developing and implementing health policy positions, setting an advocacy agenda in the legislative and regulatory arenas, engaging with policymakers, and educating CHEST members on governmental affairs relevant to CHEST’s mission.
COVID-19 Resources from the ALS Association
The ALS Association has developed multiple printable resources to assist those with ALS during the pandemic, including a medical information packet, social distancing door sign, hospital communication sign, and medical information card.
Coronavirus and Spinal Cord Injury
Spinal Injuries Association (SIA) has updated information regarding COVID-19 for SCI people, their caregivers and healthcare professionals. There is also a section on their website covering their three-pronged approach to support - information and advice, advocacy and representation and your support network.
They have also produced a briefing sheet on risk, vulnerability and Coronavirus for SCI people.
The American Thoracic Society 2020 International Conference set for May 15-20 in Philadelphia has been cancelled.
Parent Project Muscular Dystrophy 2020 Annual Conference
PPMD's annual conference originally scheduled for June 25-28, 2020 at the Phoenician Hotel in Scottsdale, Arizona has been rescheduled for July 22-25, 2020. The conference brings together nearly 700 families from around the world to learn the latest progress in the fight to end Duchenne.
The 26th Annual FOCUS Conference originally scheduled for September of this year has been pushed back to September 10-11, 2021. It will still take place in Memphis, Tennessee, at The Guest House at Graceland Hotel. Full details are available at https://foocus.com.
CHEST is moving forward with its original plan to hold its annual meeting in Chicago, Illinois, October 17-21. CHEST will be granting full refunds to any registrant who finds that they can no longer attend CHEST 2020 as the meeting approaches. Attendees will be able to make changes to or cancel hotel reservations up to 24 hours in advance of the reservation date without penalty. Registration is open.
Passy-Muir Offering Remote Live In-services
Passy Muir is offering Remote Live In-services in order to get education out to those who need it quickly and conveniently. They have recently increased their clinical education offerings to include important COVID-19 information. A schedule is available on their website. These free courses are being offered through a remote live in-service format, which attendees to get both the education and time to speak to a clinician.
Ventec Partners with GM to Produce Ventilators for Pandemic Response
A new website, www.ventecgm.com, gives an in-depth look at the unique partnership between the automaker and the manufacturer of the VOCSN ventilator as they work around the clock to manufacture ventilators for the federal government's pandemic response.
The first ventilators produced by the partnership started arriving in Chicago-area hospitals on April 17th, just one month after the partnership was first conceived. The contract calls for the eventual delivery of 30,000 of the ventilators, which Ventec has dubbed the VOCSN V+Pro Emergency Critical Care Ventilator.
Ventec Life Systems clinical team members show respiratory and clinical staff at Weiss Memorial Hospital how to operate VOCSN critical care ventilators Friday, April 17, 2020 in Chicago, Illinois. The ventilators were produced at the GM manufacturing facility in Kokomo, Indiana through a partnership with Ventec in response to the COVID-19 pandemic. Photo by Nuccio DiNuzzo for GM.
In 2016, shortly after they had received FDA approval, IVUN spoke with Ventec CEO Chris Kiple, and Chris Brooks, Ventec's Managing Director at the time, about the development of the VOCSN. See "Five in One: A Unified Respiratory System."