INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 31, NUMBER 4
In an August 9, 2017 article in the New England Journal of Medicine, “Repeal, Replace, Repair, Retreat — Republicans’ Health Care Quagmire,” Jonathan Oberlander, PhD, wrote a succinct review and his perspective of the recent healthcare debate in the US. The debate is not over........MORE
Update from University of Toronto and CoughAssist Study
Louise Rose, RN, MN, PhD, lead researcher of “CoughAssist: use education needs, health service utilization, and outcomes,” reports the following. (See Organization Awards $100,000 for Study in 2016-2017 and PHI/IVUN Research Update.) “Participant recruitment for the longitudinal study has increased exponentially. We now have 38 enrolled in the study...........MORE
Polio Place: A site for history, too
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. 31, No. 4, August 2017
Editor: Joan L. Headley
Designer: Brian Tiburzi
© 2017 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at email@example.com.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to firstname.lastname@example.org.
Ventilator Users Speak Up During U.S. Healthcare Debate
A Fight for Life at Home
In an August 9, 2017 article in the New England Journal of Medicine, “Repeal, Replace, Repair, Retreat — Republicans’ Health Care Quagmire,” Jonathan Oberlander, PhD, wrote a succinct review and his perspective of the recent healthcare debate in the US. The debate is not over.
Oberlander reminds us, “The Medicaid reductions were necessary to offset the costs of tax cuts for higher-income Americans and reflected long-standing conservative aspirations to limit the program. But Medicaid’s remarkable scope (it covers more than 70 million Americans), array of sympathetic constituencies (it covers 49% of all children, 39% of births, 35% of persons with disabilities, and 64% of nursing home residents), role in financing vital medical services (including mental-health, HIV, and opioid-addiction treatments and long-term care), and importance to health system stakeholders (including hospitals, physicians, and states) means that it is not an easy mark. The ACA’s Medicaid expansion has given many states an even larger stake in the program, making it harder to cut. The backlash from governors, the health care industry, and consumer groups was fierce, and the proposed Medicaid cuts helped doom the chances of repeal in the Senate.”
Fierce Consumers: New and Experienced
Trach Mommas of Louisiana
On July 10, 2017, the founders of Trach Mommas of Louisiana, Angéla Lorio and Jessica Michot were outside the Republican National Committee building (Washington, DC) on behalf of their four-year old sons, who both depend on ventilator via a tracheostomy to breathe. The mommas were protesting the cuts to Medicaid in the Better Care Reconciliation Act (BCRA) that was under consideration by the Senate. The cuts to Medicaid, and the lower of payments for equipment and supplies and attendant care, would dramatically affect the family’s ability to have their children live at home.
Gabriel Michot, born at 27 weeks, was diagnosed with a host of lung problems, including bronchopulmonary dysplasia. John Paul Lorio’s trachea was not fully developed when he was born at 27 weeks and he has a condition called tracheomalacia.
To learn more about their advocacy and their trip to Washington, DC, review Families take a risky road trip to save their health care.
Angéla Lorio (left) and Jessica Michot
Trach Mommas of Louisiana (TMOL) was created in 2016. It was founded to fill the severe gap that existed in the realm of mothers of children with medical complexities/technology needs in Louisiana. Mothers craved peer support. The goal is that no other “momma” will have to walk this path alone. Their contact info is email@example.com.
Mark Boatman, who uses a ventilator 24/7 due to Duchenne Muscular Dystrophy (DMD), used various methods to tell his story and the effect the Medicaid cuts would have on people with disabilities in North Dakota, his home state, and Montana, his home today.
Boatmen wrote a letter to the editor of the Jamestown Sun (North Dakota). His letter informed the public about his life. “I’m 41 years old, have life-threatening muscular dystrophy and Medicaid insurance pays for a ventilator that pushes every breathe into my body. Without this vital machine, I’d be dead in minutes.
“It took me almost four years to escape a Jamestown nursing home to move to Missoula, Mont., to live in the community in 2006. Medicaid insurance has given me a good life under the Big Sky. Medicaid pays for nurses and caregivers to get me out of bed, dress me, shower me, run tube feedings, clear my airway and transport me places – pretty much everything I need doing in a day. It is truly my lifeline to the world.
“I’ve also managed to stay healthy and thrive thanks to Medicaid because it pays for my team of specialist that keep me alive. It pays for all my medications, medical equipment and medical supplies that I require.”
He contacted the press and was interviewed by a reporter from 8 KPAX. Lolo resident on Senate health care bill: “I'm scared.”
Mark also was videotaped, explaining the importance of Medicaid to him and how he participates in the economy by hiring attendants, buying groceries, etc. The video was shot during an action at the office of Senator Steve Daines (R) on June 30, 2017.
The action was part of the organized effort nationwide by ADAPT based in Austin, Texas. Ventilator user Carrie Ann Lucas, Windsor, Colorado, participated in an ADAPT action at Senator Cory Gardener’s office. “Carrie Ann Lucas was the last to be taken away. Her ventilator gave police pause, so they decided to send her to a hospital to be checked and released.
“Police called a Regional Transportation District bus to move Lucas, who uses a wheelchair. As the bus pulled up, a lift dropped down so Lucas could be rolled on. The irony wasn’t missed. The wheelchair-accessible bus that carried Lucas away last week exists because of a similarly dramatic civil disobedience action held by the same group nearly 40 years ago.” Read more about the origins and activities: Meet the disabled activists from Denver who changed a nation.
Long-time Attendant Care Advocate Honored
Adolf Ratzka, ventilator user, Independent Living Institute, Sweden, was honored by ULOBA, a large personal assistance cooperative in Norway, with their Pride Award in Oslo on June 17. ULOBA's Secretary General Vibeke Maröy Melström, stated, “This year’s award winner has played an active role within the Independent Living movement since the early 70s. Ratzka thinks that things are definitely moving too slowly! He believes that it is critical that we shift our focus from fighting for individual rights to focusing on civil liberties overall.”
In his acceptance speech, Ratzka told his story. “I’m proud of the award you are giving me and I want to share the award with two important women in my life. I was 17 when I was paralyzed by polio and had to live in a hospital. After five years in the hospital in Germany, I had a chance to study at university in the United States. With money from a scholarship I was to live and study in Los Angeles, all by myself without family, without knowing anybody there, without knowing much of the language.
“I needed lots of help. I needed help with going to bed, needed a ventilator in order to sleep, needed help for going to the toilet, and for getting bathed and dressed. With the money from the scholarship, I was planning to hire fellow students as, what we today would call, my personal assistants.
“I was 22, I didn’t know much about life, I didn’t know what risks would await me. My mother knew I wanted to go, and she knew I would learn something important for the rest of my life. Trusting in my ability to learn how to manage my life, she let me go. I’m very proud of my mother.
“The other woman I want to share my award with is Doro. I’ve met many people in my life who helped me along my way. Doro is the most important one. She has been my anchor in the emotional ups and downs of my life. She has been the solid ground which I needed for feeling safe and secure.
“We started out as travel companions. Now, we have been travelling together through life for over 30 years. We’ve had many adventures together. The biggest one so far has been raising our daughter Katharina. We adopted her in Costa Rica after four years of fighting in Swedish courts for the permission to adopt a child.
“Katharina was three months old when we got her. Next month she will turn 23. A few weeks ago she received her university diploma as Licensed Occupational Therapist. A few weeks ago she and her boyfriend moved together into their own apartment. I am very proud of our daughter.
"I am not proud of my disability. I didn’t choose to become disabled. It is very inconvenient to be disabled. When you are disabled, society makes you dependent. We are made dependent on our families, when we don’t get enough personal assistance; we are made dependent on other people’s help, when the built environment is not accessible; we are made dependent when other people dictate how we should live our lives.
“When you are disabled, people see you as being different. Sure, I look different from most people. Not many drive around in an electric wheelchair wearing a nasal mask for breathing and speaking. We may look eccentric but we are not special persons. We are profoundly ordinary people because, just like all human beings, we need to be seen for who we are, we need to belong, and we need to be loved.
“These needs we share with everyone, these needs make us truly ordinary human beings. As profoundly ordinary people, we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own.
“To this end, we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights.
“I’m mighty proud of belonging to our international sisterhood and brotherhood that works for these goals. Let us all fight for our equal rights as equal citizens. Let us all be proud.”
IVUN and PHI-Funded Research
Update from University of Toronto and CoughAssist Study
Louise Rose, RN, MN, PhD, lead researcher of “CoughAssist: use education needs, health service utilization, and outcomes,” reports the following. (See Organization Awards $100,000 for Study in 2016-2017 and PHI/IVUN Research Update.)
“Participant recruitment for the longitudinal study has increased exponentially. We now have 38 enrolled in the study. Five have completed the nine months of follow up and another 16 are in the final three months. We have completed the interview phase and are starting to analyze the data. The 28 interviews included seven new cough assist users and seven established cough assist users. We also interviewed the equivalent in terms of caregiver numbers.
“We are on track for a final report to PHI/IVUN in the fall of 2018 and will be ready to submit articles for publication.”
Call for Proposals for PHI Research Fund Grant
Deadline for 2018: October 2, 2017 (Monday)
Funding in the amount of $50,000 is available from Post-Polio Health International and International Ventilator Users Network for research to be completed in 2018. Application for the funds must be received by October 2, 2017. (Applicants may apply for $100,000 for a study taking two years to complete.)
Researchers can choose to apply for one of the two grants described below.
The Thomas Wallace Rogers Memorial Respiratory Research Grant to study the management of neuromuscular respiratory insufficiency or to explore historical, social, psychological and independent living aspects of long-term home mechanical ventilation
The Post-Poliomyelitis Research Grant to study the cause(s), treatment and management of the late effects of polio or to explore historical, social, psychological and independent living aspects of living with polio.
The research must have the potential to improve the lives of polio survivors or users of home mechanical ventilation. For details on the application process and to access the form, see www.polioplace.org/phi-funded-research/new-request-2018-award.
PHI-Funded Research published in Scientific Reports, July 2017
Team’s new methods validated. Second article in progress.
"Revealing enterovirus infection in chronic human disorders: An integrated diagnostic approach" authored by Angelo Genoni, Filippo Canducci, Agostino Rossi, Francesco Broccolo, Konstantin Chumakov, Giorgio Bono, Jorge Salerno-Uriarte, Alessandro Salvatoni, Alberto Pugliese & Antonio Toniolo was published online in Scientific Reports 10 July 2017. They chose to make the article open access and so it is freely available at http://rdcu.be/t4V4.
Lead researcher, Antonio Toniolo, MD, Professor of Medical Microbiology, University of Insubria, Varese, Italy, reports, “This paper provides the evidence and justification for polioviruses being still present in the bodies of polio survivors after so many years.”
“I am glad that the results have been validated by an expert in the field, Konstantin M. Chumakov, PhD, Office of Vaccines Research and Review (OVRR) at the Food and Drug Administration. As an aside, he is the son of the famous Russian virologist Michael Chumakov who introduced the American poliovirus vaccines in the former Soviet Union. By 1959, the elder Chumakov organized the first mass production and clinical trials of the Oral Poliovirus Vaccine (OPV) made from live attenuated strains developed by Albert Sabin.
“We are preparing a full paper on post-polio with data from over 100 polio survivors now that the technicalities of the method have been approved for publication.”
Basically, the study shows that the protracted persistence of poliovirus in post-polio survivors can be demonstrated by analyzing blood leukocytes for the presence of virus. The original method set up in Italy is based on the in vitro cultivation of blood leukocytes and the further examination by genomic methods, i.e. polymerase-chain reaction (PCR) followed by virus genome sequencing. In addition to that, investigators have also been able to show that persistent polioviruses maintain their ability to produce virus structural proteins when propagated in cell cultures. Thus two independent lines of evidence point to the conclusion that – decades after the initial acute poliovirus attack – a minimal population of mutated virus remains still present in a portion of polio survivors.
The authors speculate that the presence of persistent poliovirus could be responsible for chronic inflammation (probably within the central nervous system and skeletal muscles). Studies are progressing with the idea of finding antiviral drugs capable of blocking the ongoing poliovirus replication in poliovirus-positive polio survivors.
The evidence provided by the study also provides support for the administration of intravenous immunoglobulins to post-polio subjects (an international clinical trial is currently ongoing with the support of Grifols, an immunoglobulin manufacturer). An additional possibility may be represented by the therapeutic administration of the existing poliovirus vaccines.
The team of researchers received funds from PHI both in 2009 ($25,000) and in 2014-15 ($50,000 each year). For details, see http://polioplace.org/phi-funded-research.
Scientific Reports is part Nature Research, the home of high impact scientific and medical information in print and online. The Nature Research portfolio includes Nature (www.nature.com).
Interested in History?
The PHI Board of Directors determined in the late 2000s that it would create a place on the internet to house all of the organization’s publications and activities, from 1958 to present. Their commitment - a place for all things polio - was on behalf of polio survivors worldwide. With the financial support of the Roosevelt Warm Springs Foundation (RWSF), Polio Place was born.
The information on Polio Place is available for free to survivors and families all over the globe. It is also helpful for advocates and health professionals to adapt for their own country and situation.
Its content is historical, medical, practical and personal.
Polio Place uses Drupal™, an open-source web content management platform and is in a simplified format to make it easier for individuals in developing countries to access the knowledge.
PHI continually adds material to the above sections. Check back often to see what's new.
From ALS Association, the official blog of The ALS Association
New Comprehensive ALS Review Published
In the July 13, 2017 issue of The New England Journal of Medicine, leaders in the ALS field, Drs. Robert Brown, University of Massachusetts Medical School, and Dr. Ammar Al-Chalabi, King’s College London, came together to write a comprehensive ALS review. The ALS Association blog posted the article with permission from The New England Journal of Medicine.
The U.S. COPD Coalition (USCC) is a nonprofit organization made up of patient organizations, health professional organizations, individuals, and government agencies who work together in a unified manner to promote the interests of individuals affected by COPD. The U.S. COPD Coalition wants to collaborate with all groups that want to take action on COPD in the United States. Explore the COPD Action Center.
From the U.S. COPD Coalition
Rosa's Law Amends Sections of the Rehabilitation Act and IDEA
Rosa's Law (Pub. L. 111-256) amended sections of the Rehabilitation Act of 1973, as amended (Rehabilitation Act) and the Individuals with Disabilities Education Act (IDEA), by removing the words “mental retardation” and replacing them with the words “intellectual disability” or “intellectual disabilities.” The final regulations implement these statutory changes in applicable Office of Special Education and Rehabilitative Services (OSERS) regulations.
From The ABLE National Resource Center
The ABLE National Resource Center (ANRC) is a collaborative whose supporters share the goal of accelerating the design and availability of ABLE accounts for the benefit of individuals with disabilities and their families. Check out details state by state.
RECENT RELEVANT PUBLICATIONS
“How does neuromuscular disease interfere with cough effectiveness? How can cough effectiveness be objectively assessed? What techniques can be used to augment cough?”
Case Conferences: The Clinical Physiologist Section, Editor: John W. Kreit, MD, and Erik Swenson, MD.
Cough Augmentation in a Patient with Neuromuscular Disease, Haala K. Rokadia , Jacob R. Adams, Kevin McCarthy, Loutfi S. Aboussouan, and Eduardo Mireles-Cabodevila. Ann Am Thorac Soc. 2015;12 (12):1888-1891.
The objective of the study was to compare pulmonary function measures, maximal respiratory pressure and fatigue of respiratory muscles between patients with Post-Polio Syndrome (PPS) and controls. Conclusion: “Maximal respiratory pressure test and sEMG measurements may identify fatigue of respiratory muscles in patients with PPS. Early diagnosis of respiratory impairment may delay respiratory decline and future need of invasive respiratory aids.”
Comparison of activity and fatigue of the respiratory muscles and pulmonary characteristics between post-polio patients and controls: A pilot study, David Shoseyov, Tali Cohen-Kaufman, Isabella Schwartz, Sigal Portnoy. PLoS ONE. 12(7): e0182036. Published: July 27, 2017.
“Although having sleep apnea has been linked to elevated risk of heart disease, high blood pressure and stroke, a new analysis of past research finds that apnea treatment with positive airway pressure (PAP) does not reduce the risk of cardiovascular events or death.”
Does Obstructive Sleep Apnea Treatment Reduce Cardiovascular Risk? It Is Far Too Soon to Say. Daniel J. Gottlieb, MD, MPH, JAMA. 2017;318(2):128-130.
“In 1991 doctors in Australia began giving babies synthetic surfactant and their outlook improved significantly. Around the same time ‘non-invasive ventilation’ was introduced and became the preferred way of helping babies breathe.
“Instead of tubes down their throat, pre-term babies now had two little tubes resting just inside their nose with Continuous Positive Airway Pressure (CPAP) delivering air and oxygen, and helping their lungs stay inflated.”
Rethinking Premature Baby Care, based on Ventilation in Extremely Preterm Infants and Respiratory Function at 8 Years. Lex W. Doyle, MD, Elizabeth Carse, MD, Anne-Marie Adams, PhD, Sarath Ranganathan, PhD, Gillian Opie, MB, BS, and Jeanie LY Cheong, MD, for the Victorian Infant Collaborative Study Group, N Engl J Med. 2017; 377:329-337, July 27, 2017.
“New research takes a novel approach to traditional, clinician-only sedative delivery, finding that select critically ill patients can safely self-administer sedatives to manage their anxiety during mechanical ventilation.
“Patients in intensive care units (ICUs) are often lightly sedated to promote their comfort with mechanical ventilator breaths and to reduce anxiety.”
Safety and Acceptability of Patient-Administered Sedatives During Mechanical Ventilation published in the July 2017 issue of American Journal of Critical Care (AJCC). Also see www.ncbi.nlm.nih.gov/pubmed/28668914.
“When people have a severe attack of COPD, their breathing becomes very difficult. This can turn into breathing failure [acute hypercapnic respiratory failure (AHRF)] that often requires urgent hospital-based medical care.
“NIV is used more frequently nowadays to help such patients in many hospitals. This review aimed to determine the effectiveness of adding NIV to usual care for this patient group.”
Non-invasive ventilation for people with respiratory failure due to exacerbation of chronic obstructive pulmonary disease (COPD). Osadnik CR, Tee VS, Carson-Chahhoud KV, Picot J, Wedzicha JA, Smith BJ. Cochrane Database of Systematic Reviews 2017, Issue 7. Art. No.: CD004104.
“This real-life trial identified the FFM as the predominantly used interface in COPD patients undergoing long-term NIV.”
Interfaces and ventilator settings for long-term noninvasive ventilation in COPD patients. Jens Callegari, Friederike Sophie Magnet, Steven Taubner, Melanie Berger, Sarah Bettina Schwarz, Wolfram Windisch, Jan Hendrik Storre. Int J Chron Obstruct Pulmon Dis. 2017; Jun 28;12:1883-1889.
“In total, 430 patients were randomized. The respiratory polygraphy protocol was non-inferior to the polysomnography protocol based on the Epworth scale.”
Conventional Polysomnography is Not Necessary for the Management of Most Patients with Suspected Obstructive Sleep Apnea. Corral J, Sánchez-Quiroga MÁ, Carmona-Bernal C, Sánchez-Armengol Á, Sánchez-de-la-Torre A, Durán-Cantolla J, Egea CJ, Salord N, Monasterio C, Terán J, Alonso-Alvarez ML, Muñoz-Méndez J, Arias EM, Cabello M, Montserrat JM, De la Peña M, Serrano JC, Barbe F, Masa JF, Spanish Sleep Network, Am J Respir Crit Care Med. 2017; Jun 21.
European Respiratory Society (ERS) International Congress 2017
September 9-13, 2017, Milan, Italy. Registration is open.
FOCUS Fall 2017
September 28, 2017, Fall Focus (earn 10 credits), Doubletree Hilton Hotel, Monroeville, Pennsylvania (12 minutes from downtown Pittsburgh). Register online.
October 18, 2017, 36th Annual Fall Respiratory Therapy & Sleep Medicine (10 CRCE/CSTE/CEC) Conference, Poughkeepsie Grand Hotel in Poughkeepsie, New York. Register online at www.Foocus.com. (The next day, Thursday, October 19th, is the annual 8-credit conference of lectures for critical care nurses who work with adult patients, co-sponsored by the NY State Nurses Association. ICU nurse colleagues can visit www.FocusOnNursing.com for complete details.
October 28- November 1, 2017, Toronto, Canada. CHEST annual meeting offers more than 400 general sessions, postgraduate courses, simulation education sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
Make plans to attend the Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation Monday, October 30, at 1:30 pm Convention Center, Room 701A.
"When Air becomes BREATH ... and a Life worth Living" is the title of the 2017 lecture to be presented by Audrey J. King, a Toronto native and a dedicated and effective advocate. King is 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.
JIVD/ERCA Conference in 2018
March 15 - 17, 2018, 3rd International Joint Meeting of the JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association), Cité Centre de Congrès, Lyon, France. See Preliminary Program. www.jivd-aer.com
FOCUS Spring 2018
May 4, 2018, Friday, Graceland Guesthouse, Memphis, Tennessee. Watch for details.
ATS Conference 2018
May 18-23, 2018, American Thoracic Society's 2018 International Conference, San Diego, California.
CCHS Family Conference 2018, alongside The 5th International CCHS Conference
June 19-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA.
FOCUS Fall 2018
September 14 & 15, 2018, Fall FOCUS, Hotel Irvine, Irvine, California. Watch www.Foocus.com.
Home Ventilator Guide Updated
IVUN’s Home Ventilator Guide has been updated. Notify IVUN at firstname.lastname@example.org if there are additions or changes.
New from Philips Respironics
The hose on the top of the head design gives one a full field of vision to read or watch TV before falling asleep. It is comfortable for wearing glasses. The gel pillows cushion works with almost any nose shape. Three sizes (S,M,L) of nasal pillows offers a comfortable, custom fit.
DreamWear Gel Pillows
This mask is intended to provide an interface for application of CPAP or bi-level therapy to patients. The mask is for single patient use in the home or multi-patient use in the hospital/institutional environment. The mask is to be used on patients (>66lbs/30kg) for whom CPAP or bi-level therapy has been prescribed. It is not for use for ventilation intended for life support.
Published in Khaleej Times
Published in HME News
Royal Philips has made its wirelessly connected Trilogy family of portable ventilators commercially available in North America. The Bluetooth-enabled devices, which connect to Care Orchestrator, deliver data directly to mobile devices or the desktops of healthcare providers multiple times per day, allowing them to make clinical decisions more proactively, according to a press release.
Care Orchestrator is a cloud-based software application that enables data, clinical management workflow, informatics and intelligence capabilities for providers, payers and patients in a single platform. “To have a meaningful impact on patient outcomes, we need to work closely with care providers and develop technologies that can help them break the cycle of reactive care,” said Eli Diacopoulos, Respiratory Care Business Leader, Philips.