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JUNE 2020

Each year, hundreds of families of children with chronic respiratory failure (CRF) face difficult and impactful decisions regarding long-term ventilation for their child. Oftentimes these decisions are made under intense stress with an incomplete understanding of the long-term ramifications their choice will have on both their child and family.........................................................................MORE​

IVUN has received reports from numerous ventilator users across the country of shortages of circuits and filters. The problem is frustrating, though not unforeseen. As far back as March, the FDA had noted in a letter to health care providers that the need for ventilator accessories "may outpace the supply available to health care facilities during the Coronavirus Disease 2019 (COVID-19) outbreak." .................................................................................................MORE

Ventilator-Assisted Living

Vol. 34, No. 3, June 2020

Editor: Brian Tiburzi

Designer: Brian Tiburzi

ISSN 1066-534X

© 2020 Post-Polio Health International.

Permission to reprint must be obtained from Post-Polio Health International (PHI) at

Ventilator users, health professionals, non-profits, company representatives – send comments and updates to


Each year, hundreds of families of children with chronic respiratory failure (CRF) face difficult and impactful decisions regarding long-term ventilation for their child. Oftentimes these decisions are made under intense stress with an incomplete understanding of the long-term ramifications their choice will have on both their child and family.

In an effort to address this problem, Jeffrey D. Edwards, MD, MA, MAS, Division of Pediatric Critical Care, Department of Pediatrics, Columbia University College of Physician and Surgeons, New York, New York, has created a Long-Term Ventilation Information and Decision-Making Support booklet to help families make better-informed decisions around whether to provide their child with invasive or noninvasive ventilatory support. 

“Counseling families on this decision is difficult for providers because 1) so much complex information must be shared with families, who have a range of health literacy and values; 2) there is lack of prognostic information for these children, partly because they have so many different kinds of underlying conditions; 3) the need to discuss sensitive topics; and 4) providers’ explicit and implicit biases,” said Edwards. “These challenges leave families less able to participate in shared decision-making, without proper anticipatory guidance, and at risk for decisional distress and regret.”

The illustrated booklet is divided into nine sections on chronic respiratory failure and invasive ventilation via tracheostomy and noninvasive long-term ventilation (LTV). It addresses topics, including sensitive ones, relevant to patients and families, both in the short- and long-term.

The guide is intended as a supplement to discussions with a child’s medical team, not a replacement. “The booklet explicitly encourages families to ask questions and discuss issues with their medical team,” explained Edwards, “and encourages families, if possible, to discuss its contents with their child in a developmentally-appropriate way.”


Click image to enlarge.

In developing the guide, input was sought from three groups: 1) parents with a child with CRF who faced a decision around LTV; 2) parents with a child with CRF who were facing a decision; and 3) directors of pediatric home ventilation programs. The booklet was then refined over several drafts based on feedback from these groups. In evaluating the guide, Edwards’ team found that “parents who read the booklet had less decision-making uncertainty than the parents who did not.”

The downloadable guide (also available in Spanish) along with more information about the project can be found on Columbia University Department of Pediatrics’ website. A notice of the booklet was sent out to various providers via complex care and palliative care listservs. A poster and the booklet were presented at the American Thoracic Society annual conference.


IVUN has received reports from numerous ventilator users across the country of shortages of circuits and filters. The problem is frustrating, though not unforeseen. As far back as March, the FDA noted in a letter to health care providers that the need for ventilator accessories “may outpace the supply available to health care facilities during the Coronavirus Disease 2019 (COVID-19) outbreak.”

In order to stretch available supplies and “avoid depletion of breathing circuit supplies,” the FDA advised that health care facilities should “consider extending the shelf life and duration of use of these products for treating individual patients, depending on the availability of resources.” Many home ventilator users are being told to simply make do with less and clean what they can.

For its part, the FDA is asking anyone – user, patient, manufacturer, or organization within the supply chain – who is aware of a delay in distribution of a product, or anticipates a potential or actual shortage to email information to them at

Recognizing that many ventilator users are being asked to clean and reuse circuits, Chest Foundation has created two short how-to videos on how to properly clean both wired and non-wired circuits. As they note on their site, equipment that is typically disposable should only be cleaned and reused when you are unable to procure new equipment from your medical supplier due to the pandemic.



HHS Directs Hospitals to Make Exceptions to No-Visitor Policies for People with Disabilities

As hospitalizations due to COVID-19 surged in late March into April, most hospitals put no-visitor policies into effect to try to limit the spread of coronavirus. For some with disabilities, though, these policies posed a direct threat to their health and well-being. Many found themselves separated from caregivers who had vital knowledge about their medical needs and care routine. 

In Connecticut, a formal complaint to the Department of Health and Human Services Office of Civil Rights led to a resolution whereby the state issued an executive order creating a new statewide policy requiring that people with disabilities be allowed to have a designated support person with them at the hospital. If a patient with a disability is at the hospital for more than a day, they are entitled to two support people, but only one may be present at a time.

While that resolution applies specifically to Connecticut, it in effect sets a national precedent for how states and hospitals can ensure their policies comply with federal disability laws.

Bill to Protect Caregivers from Discrimination Introduced

The bill known as the Protecting Family Caregivers from Discrimination Act, or S. 3878, would prohibit employers from refusing to hire an applicant or taking “adverse action” against an employee — including firing, demoting or mistreating them — because of their caregiving responsibilities. The measure would also make it unlawful for an employer to retaliate against workers who want the protections enforced and it would create a grant program to support efforts to prevent discrimination against family caregivers.

The bill was introduced by Sen. Cory Booker, D-N.J., who explained, “Most family caregivers are employed and work to balance the responsibilities of their job while also providing that care. It is unacceptable that workers are being discriminated against simply because they have responsibilities outside of the workplace.”

As of 2020, AARP found that 53 million Americans care for a loved ones and 61% of them work a full-time job. Currently, many caregivers are ineligible for any form of protection under federal law and continue to face discrimination in the workplace due to their family caregiving responsibilities. According to the Center for WorkLife Law at the University of California, San Francisco the number of cases of those discriminated against for ‘family responsibilities’ increased from 873 in the years between 1996 and 2005 to 3,223 in the years between 2006 and 2015. 

Nebraska Groups File Complaint Over Barriers to COVID-19 Testing

Disability Rights Nebraska, joined by several other disability rights advocates, have filed a letter of complaint with the U.S. Department of Health and Human Services Office for Civil Rights over Test Nebraska access for people with disabilities.


The complaint stemmed from the fact that people who are unable to drive because of a disability lack access to the drive-up testing stations. Advocates contend that Test Nebraska could easily accommodate this group by either dispatching health care workers to a person’s residence to do testing or by providing safe transportation in which a driver is wearing proper protective equipment.

Critics say these barriers, which are hardly unique to Nebraska, can lead to delays in access to health care and worse outcomes for people with disabilities. Moreover, they hamper the state's ability to accurately track the spread of the disease. Bonnielin K. Swenor, director of the Johns Hopkins Disability Health Research Center, pointed out in a recent article on STAT, that current statistics "represent only a fraction of the disabled population and are a partial view of pandemic’s impact on the disability community. Relying on these data alone will not be sufficient and without expanded data collection the Covid-19 response will continue to miss the mark for the majority of disabled people."



From CHEST: 5 Steps for Medical Care During COVID-19

The American College of Chest Physicians (CHEST) recently published a video identifying five steps those living with chronic respiratory conditions can take to help protect themselves from COVID-19 and stay in regular communication with their doctor.

From Parent Project Muscular Dystrophy: Navigating Your Neuromuscular Team

During one of their recent "Family Fridays" on Facebook Live, PPMD discussed ways to facilitate and build relationships with your neuromuscular team. The video features Gretchen Egner and Alpa Khushalani, parents, and Colin Werth, an adult living with Duchenne, to hear about their experiences navigating healthcare.



Recent Pubs

Healthcare Utilization and Costs of Pediatric Home Mechanical Ventilation in Canada

Nonoyama ML, Katz SL, Amin R, et al.

“For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.”

Pediatr Pulmonol. 2020 Jun 24. Epub ahead of print. doi: 10.1002/ppul.24923.

James Somers

The Engineers Taking on the Ventilator Shortage

“Since February, engineers in industry and academia have been working on designs for cheap, easy-to-build ventilators. Ford has christened its effort Project Apollo. And yet comparisons to the moon landings may understate the complexity of the problem. covid-19 is a mysterious illness, and ventilators admit to many styles of operation. In the best case, the machines keep patients with failing lungs alive, buying time for the body to heal. In the worst case, they can aggravate lung damage. In the course of the pandemic, critical-care specialists have disagreed about how the devices should be operated and at what point in a patient’s decline they should be used; mortality rates for covid-19 patients on ventilators have ranged widely. Manufacturing a ventilator is difficult, especially during a pandemic, when supply lines are unreliable. Different designs negotiate different bargains between cost and functionality. Reaching the moon is challenging enough. It’s harder when no one is sure where the moon is.”

The New Yorker. May 18, 2020.

Robert D. Truog, MD, Christine Mitchell, RN, and George Q. Daley, MD, PhD

The Toughest Triage — Allocating Ventilators in a Pandemic

“In the weeks ahead, physicians in the United States may be asked to make decisions that they have never before had to face, and for which many of them will not be prepared. Though some people may denounce triage committees as 'death panels,' in fact they would be just the opposite — their goal would be to save the most lives possible in a time of unprecedented crisis. Creation and use of triage committees, informed by experience in the current pandemic and prior written recommendations, can help mitigate the enormous emotional, spiritual, and existential burden to which caregivers may be exposed.”

N Engl J Med. 2020; 382:1973-1975. doi: 10.1056/NEJMp2005689

Abigail Abrams

'This Is Really Life or Death.' For People With Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care

“Alice Wong, 46, sees these biases too. She has a progressive neuromuscular disease that means she uses a ventilator, attached to her wheelchair, all the time. When hospitals started talking about rationing ventilators during the COVID-19 crisis for the most 'deserving' patients, Wong was angry but not surprised. At least 25 states have policies that could mean people with disabilities are less likely to get critical care if hospitals are overloaded, according to a report from the Center for Public Integrity. Six states’ triage plans allow doctors to take away ventilators from those, like Wong, who use them in everyday life to help other patients.”

Time. April 24, 2020.



Ed Ops

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 and will be held as a virtual conference. More information and registration is available online.

Focus 2020

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

CHEST 2020

CHEST is moving forward with its original plan to hold its annual meeting in Chicago, Illinois, October 17-21CHEST 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.


CCHS Network Family Conference 2021

The CCHS Network Family Conference will take place July 6-9, 2021 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. Rooms may be reserved at the Hyatt Regency Newport Beach.



E0467 “Same or Similar” Restrictions Eliminated by CMS

On May 29, 2020, the Centers for Medicare and Medicaid Services (CMS) updated its policy for HCPCS code E0467 (Multi-Function Ventilator) removing “same or similar” restrictions and paving the way for increased access to integrated respiratory care for ventilator users regardless of their device billing history. Previously, same or similar restrictions precluded many patients from qualifying for a multi-function ventilator if they had previously billed for an oxygen, cough, suction, or nebulizer device. The change is permanent and went into effect immediately upon announcement. 

Ventec's VOCSN is currently the only multi-function ventilator that meets the standard set for HCPCS reimbursement code E0467 which was introduced on January 1, 2019. Suppliers providing VOCSN generally see a 15-20% higher payment amount for HCPCS E0467 than traditional ventilator-only codes (E0465 and E0466).

In a press release, Ventec Life Systems CEO Chris Kiple applauded the announcement saying, “We thank CMS for making this impactful change to E0467 to ensure access to the benefits of integrated respiratory care for ventilator users and their care partners.”

ResMed Accelerates Release of Ventilator Telemonitoring Platform

ResMed in May launched a cloud-based remote monitoring software for ventilators and Lumis bilevel devices across Europe, via its AirView platform. AirView allows clinicians and care providers the ability to remotely monitor their patients’ respiratory rate and blood oxygen saturation, two key indicators that should be monitored to track changes in a respiratory patient’s condition.

“As a result of the current crisis, we accelerated the development and release of these new features by several months,” said Odile Bigaignon, ResMed's European vice president of Respiratory Care Marketing. “Through remote telemonitoring, we want to help clinicians and care providers maintain their quality of care for patients that they cannot physically see during this crisis, as well as to provide an additional layer of safety for both provider and patient by helping them to maintain social distancing.”

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