INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 33, NUMBER 5
The Centers for Medicare and Medicaid Services (CMS) issued a response this month to the 180 members of the House of Representatives who signed a letter asking the agency to drop non-invasive ventilators from the agency’s competitive bidding program. The response from CMS Administrator Seema Verma claimed that CMS has existing safeguards in place to protect access to non-invasive ventilators, including making sure that suppliers meet quality standards and availability to provide service 24 hours/day.................................................MORE
The Canadian Association for Community Living recently posted a short documentary, "Flourishing: Audrey King," that examines issues around medical assistance in dying and how it potentially impacts individuals with disabilities...................................................................................................MORE
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Vol. 33, No. 5, October 2019
Editor: Brian Tiburzi
Designer: Brian Tiburzi
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.
CMS Responds to Request to Exclude Non-invasive Ventilators from Competitive Bidding
The Centers for Medicare and Medicaid Services (CMS) issued a response this month to the 180 members of the House of Representatives who signed a letter asking the agency to drop non-invasive ventilators from the agency’s competitive bidding program. The response from CMS Administrator Seema Verma claims that CMS has existing safeguards in place to protect access to non-invasive ventilators, including making sure that suppliers meet quality standards and availability to provide service 24 hours/day.
In an article this past June (“CMS to Add Non-Invasive Ventilators to Competitive Bidding Program for Round 2021”), IVUN outlined our concerns about the plan – particularly that patients may face substantial challenges in obtaining non-invasive ventilators for home use, which in turn could force many to seek care in a more restrictive setting or require expensive hospitalizations and ER visits.
The prior month, IVUN had joined 18 other patient and pulmonary organizations in a letter sent to Alex Azar, Secretary of the Department of Health and Human Services, and Seema Verma detailing our objection to the decision to add non-invasive ventilators to the CBP. [Read the full letter.]
CMS Administrator Seema Verma
Despite CMS Administrator Verma’s assurances, many stakeholders and patient advocacy groups remain unconvinced. The American Association for Homecare stated, “The response fails to address the central tenets of the House sign-on letter, including the idea that ‘adequacy of Medicare payment for critical services like home ventilation care is paramount’ and that CMS has not previously included items requiring frequent and substantial servicing in the bid program.”
As stated in the June article, legislative action likely remains the best hope for preventing the adoption of non-invasive ventilators into the competitive bidding program. A bill – expected before the end of the year – would delay the inclusion of non-invasive vents in the program for five years (or two rounds of bidding) and would require the creation of an expert panel to create a “good medical policy” for non-invasive ventilators.
With legislation imminent, IVUN continues to encourage our members to call their senators’ or House representative’s offices and voice their concerns on this matter.
New Video Featuring Audrey King Examines Medically Assisted Dying
The Canadian Association for Community Living recently posted a short documentary, "Flourishing: Audrey King," that touches on issues regarding medical assistance in dying and its potential impact upon individuals with disabilities.
The video is part of the CACL’s “Promoting Human Flourishing in the Context of Medical Assistance in Dying” project. The project was designed in response to Canada’s June 2016 passing of the Medical Assistance in Dying (MAiD) legislation, particularly worries about oversight and regulations, and what choices might be made when MAiD is mixed with societal stereotypes.
Audrey J. King, MA, is a Toronto native and a dedicated and effective advocate. King is a ventilator user due to childhood polio and her efforts over the years has been a quest for independence for herself and for other ventilator users.
In 2017, she was awarded the Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation at CHEST 2017 in Toronto, Canada. The annual award is given to a clinician or ventilator-assisted professional/advocate who has advanced the areas of mechanical ventilation and fostered partnerships between physicians and patients. Video of that lecture is available here.
National Survey on Health and Disability
The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about health insurance and health care services. Whether you have private insurance, insurance from an employer, TRICARE, Medicaid, Medicare, or no insurance right now please complete the survey.
Adults, 18 and over, with any type of disability, mental or physical health condition are encouraged to participate
The survey should take about 20 minutes to complete
Responses are anonymous
To complete the survey, click here: 2019 National Survey on Health and Disability
Whether or not you complete the survey, you can choose to enter a drawing to win one of ten $100 gift cards. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email firstname.lastname@example.org.
National Disability Employment Awareness Month
October was National Disability Employment Awareness Month (NDEAM). The Employer Assistance and Resource Network on Disability Inclusion (EARN) blog shared research and resources on inclusive workplace wellness, including Employee Assistance Programs and wellness programs.
The 2019 NDEAM theme emphasized the essential role people with disabilities play in America's economic success, especially in an era when historically low unemployment and global competition are creating a high demand for skilled talent. Read the news release.
Also be sure to check out last issue's story in Ventilator-Assisted Living, "Tips for Finding a Job while Using a Ventilator."
Honoring Carrie Ann Lucas and Ing Wong-Ward
The Disability Visibility Project honored two ventilator users and prominent disability activists who both passed away earlier this year - Carrie Ann Lucas and Ing Wong-Ward - by posting links to a collection of writings from and about them. IVUN interviewed Carrie Ann Lucas for our own feature back in 2011 - "Carrie Lucas Fights for the Rights of Disabled Patients."
CCHS Day 2019
The 5th annual CCHS (Congenital Central Hypoventilation Syndrome) Day will take place November 9th. The CCHS Foundation's goal is to raise $250,000 this year, bringing the total amount raised since the Foundation's inception in 2014 to a total of $1 million. Find out the many ways you can help support their cause.
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.
Runners who join before December 3rd will have a lower fundraising commitment, so don't wait to sign up.
From the organizers: "For some people, the question of why to participate on the Race to End Duchenne team is right in front of them: a family member or friend living with Duchenne muscular dystrophy. For others, it’s about the opportunity to challenge oneself while helping others and raising awareness.
"Whatever your reason, please join us in Chicago on October 11, 2020. Together, we will end Duchenne."
Do you have COPD and are looking to meet others with your condition? Consider joining the COPD Foundation's social network, COPD360social. The interactive online community can connect you with others with COPD, provide you with support, answer your questions, notify you of events in your area, keep you apprised of opportunities to participate in research, let you chat with experts or download education materials, and teach you how to take action.
Ørtenblad L, Carstensen K, Væggemose U, Løvschall C, Sprehn M, Küchen S, Nørregaard O, Jensen LG.
Users' Experiences With Home Mechanical Ventilation: A Review of Qualitative Studies
“According to the users, treatment by home mechanical ventilation resulted in increased well-being and facilitated a community- and home-based lifestyle compared with institutional-based treatment. However, the users also expressed difficulties in coming to terms with the necessary extensive surveillance, which gave rise to a sense of undermined autonomy and self-determinism as well as continued worries and uncertainty. The users called this situation dependent independency. As a result of the review we call for an increased focus on a patient-centered treatment and care.”
Respiratory Care. 2019 Sep;64(9):1157-1168. doi: 10.4187/respcare.06855.
European Respiratory Society guidelines on long-term home non-invasive ventilation for management of COPD
Ergan B, et al.
“While the role of acute non-invasive ventilation (NIV) has been shown to improve outcome in acute life-threatening hypercapnic respiratory failure in COPD, the evidence of clinical efficacy of long-term home NIV (LTH-NIV) for management of COPD is less [. . .]. Managing hypercapnia may be an important intervention for improving the health outcome of COPD patients with chronic respiratory failure. The task force conditionally supports the application of LTH-NIV to improve health outcome by targeting a reduction in carbon dioxide in COPD patients with persistent hypercapnic respiratory failure.”
European Respiratory Journal. 2019 Sep 28;54(3). pii: 1901003. doi: 10.1183/13993003.01003-2019.
Understanding adherence to noninvasive ventilation in youth with Duchenne muscular dystrophy
Pascoe JE, Sawnani H, Hater B, Sketch M, Modi AC.
“Mask discomfort was the most commonly reported adherence barrier followed by behavioral barriers (eg, refusing to use). Multiple regression analyses revealed that internalizing behaviors (eg, anxiety and depressive symptoms) and total adherence barriers significantly predicted NIV adherence. Adherence to NIV in DMD is poor and similar to other pediatric chronic diseases. Our data suggest interventions targeting adherence barriers and patient internalizing symptoms may improve adherence to NIV in DMD.”
Pediatric Pulmonology. 2019 Sep 1. doi: 10.1002/ppul.24484. [Epub ahead of print]
Experience of telehealth in people with motor neurone disease using noninvasive ventilation
Pascoe JE, Sawnani H, Hater B, Sketch M, Modi AC.
“Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients' well-being, while potentially reducing unnecessary clinical contact. Implications for Rehabilitation Care for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration. Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring. Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients. Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.”
Disability and Rehabilitation. Assistive Technology. 2019 Sep 12:1-7. doi: 10.1080/17483107.2019.1659864.
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.
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.
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 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.
Inogen Plans to introduce Multi-function Ventilator
Inogen is set to enter the non-invasive ventilator market with its planned acquisition of California-based New Aera for $70.4 million.
Inogen CEO Scott Wilkinson believes it’s a market poised to “undergo disruption” due to CMS’s decision to include non-invasive vents in Round 2021 of its competitive bidding program and due to the “immobile nature” of existing products. He also noted that reimbursement for NIV is much higher than oxygen at a minimum of $934 per month.
Additionally, Wilkinson noted that CMS has approved a new HCPCS code and billing for multi-function vents. Inogen plans to launch its own multi-function ventilator sometime in 2021.