INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
This issue sponsored by:
VOLUME 31, NUMBER 5
Angéla Lorio and Jessica Michot, Trach Mommas of Louisiana
Louisiana’s budget leaves health care and education vulnerable during every budget crisis as the state’s constitution statutorily protects all other areas including nursing homes. Proposed cuts in Medicaid Waivers, which are in constant jeopardy, began our fight to protect all who need these waivers to live. The individuals we serve would either suffer greatly or not survive in nursing homes due to their medical complexities and many facilities' inadequate care........MORE
IVUN recently completed a comprehensive update of the Resource Directory for Ventilator-Assisted Living. The Directory is easily accessible from this site's home page. We also take a look at the new film Breathe and link to Robin Cavendish's prior contribution to one of our legacy publications...........MORE
Vol. 31, No. 5, October 2017
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
Looking through the Eyes of Advocacy
Angéla Lorio and Jessica Michot, Trach Mommas of Louisiana
Louisiana’s budget leaves health care and education vulnerable during every budget crisis as the state’s constitution statutorily protects all other areas including nursing homes. Proposed cuts in Medicaid Waivers, which are in constant jeopardy, began our fight to protect all who need these waivers to live. The individuals we serve would either suffer greatly or not survive in nursing homes due to their medical complexities and many facilities' inadequate care.
We have advocated at the state and national levels since our inception in 2016. Before our sons were born, we were not disability advocates. Our passion stems from having our children’s services, and those of the families we serve, threatened on numerous occasions. At the state level, we held rallies at our senators’ local offices and on the steps of our state capital. We have also given powerful testimony alongside our children, who have tracheotomies, in Appropriations and Senate Finance Committee hearings. Having a politician look into the eyes of an individual whose life will be impacted by the policies they enact can have a powerful effect.
We write to share our personal stories and those of the families we serve across the state and how they will be directly affected if the proposed cuts are made. When the Affordable Care Act (ACA) was threatened at a national level, we rallied a group of families who stood to be devastated by the proposed cutbacks. Trach Mommas of Louisiana chartered a bus and drove to Washington, DC to rally at the Republican National Committee Headquarters and try to meet with Senator Bill Cassidy (R-LA). On the bus were three children who are ventilator dependent. We are also dependent upon a reliable power source. Travelling such a long way from home and being on the road for a lengthy period of time was risky, but it was a risk that these 35 adults and children were willing to take. If the services we depend on were cut, our children's lives would be in jeopardy on a much larger scale.
It is no exaggeration to say that the battle over health care reform was a life and death matter for ventilator users. Take Gabriel, an active, vibrant 5 year-old who depends on a ventilator to live. Gabriel’s Medicaid Waiver is the only way he qualifies for Medicaid, which he depends on in addition to his family’s private insurance coverage. His ventilator is paid for and serviced through Medicaid. The family’s private insurance does not cover the servicing or repair of his ventilator. If his waiver was taken away, Gabriel would not qualify for Medicaid. On several occasions, his ventilator has malfunctioned resulting in a service call to the durable medical equipment company who is able to repair or replace it in a timely manner. Without the ability to quickly have his ventilator repaired or replaced, Gabriel would require immediate hospitalization, which would require him to be put on a costly hospital ventilator.
Jessica Michot (top left) with son, Gabriel, and Angéla Lorio with son, John Paul.
Our advocacy takes many forms. Social media campaigns on Facebook and Twitter get immediate attention and can have powerful results. Posting on social media about your stance on a particular issue along with the impact it will have on you and your family is extremely effective. Commenting on a politician’s post or Facebook page gets immediate attention. Politicians want to look good in front of their constituents who typically comprise a majority of their followers on Facebook. Any adverse comments usually get their attention and are promptly addressed. Social media is also a great mechanism to rally many people quickly around a common issue. We have used it to promote rallies, raise awareness of issues, and educate and connect with other organizations with similar missions.
Collaborating and creating a network of organizations advocating for access to health care is important. We have joined forces with and advocated alongside ADAPT. On the bus trip to Washington, Trach Mommas of Louisiana collaborated with Southwest Louisiana Independent Living Center. At the state level, we have rallied with Indivisible Louisiana, creating a powerful joint message on the steps of our state capital. Our advocacy efforts have taught us that direct face-to-face contact with senators and representatives is the most effective mechanism for achieving results. Ensuring media is present at these rallies and promoting one's own efforts helps to increase awareness among the general and hold elected officials accountable.
Two Mommas from Louisiana who did not plan to have sons with such complex medical needs rose above themselves to make sure no other mom would have to walk this road alone. Having a child who is dependent upon technology to live compels you to become an advocate for your child. From birth, we advocate for the best care for our children, making sure everything possible is being done to keep them alive and well – that there are always enough supplies, that we have good therapists, that their durable medical equipment is working, that we educate ourselves on the best practices for hospital and home care. Children and individuals with tracheostomies fight daily to survive. Families of these individuals fight daily to ensure they have the best quality of life and can thrive. When we are required to fight for all of this and put forth tireless efforts to keep our children well, we become experts at fighting for what we need.
When politicians look only at numbers on a page, it is our responsibility to educate them and share the daily reality of individuals dependent upon technology to live. The hope of educating these politicians is to ensure good policies are in place to provide long-term needed services.
Trach Mommas of Louisiana provides peer support, resources, education, training, information and advocacy to parents, caregivers, and individuals with a tracheostomy. We understand what it means to be a parent of a child with a trach. We are not led by professionals, but peers just like you. This does not take the place of professional medical advice. TMOL is also involved in the Partnership for Inclusive Disaster Strategies. To follow our Great Flood 2016, Hurricanes Harvey, Irma, Maria and wildfire relief efforts, or to follow our state and national advocacy efforts, check us out on Facebook and Twitter (@trachmommas). To support our efforts we accept donations via PayPal at email@example.com.
NEWS FROM IVUN
The Resource Directory is newly updated
The Resource Directory for Ventilator-Assisted Living recently received a comprehensive update. The latest version can be accessed from the home page. The directory contains listings of health professionals, respiratory home care companies, in-home care agencies, ventilator equipment and aids, organizations who serve ventilator-dependent individuals, and long-term ventilator care facilities. The information in the directory is accurate to the best of our knowledge. If you have a correction or would like to have your name or institution added to the directory, please contact us at firstname.lastname@example.org.
New film Breathe details the life of polio survivor and ventilator user Robin Cavendish
Breathe chronicles the life of Robin Cavendish, who contracted polio in Kenya in 1958 at the age of 28. Polio left Cavendish dependent on mechanical ventilation 24-hours-a-day. Aside from depicting his relationship with his wife, Diana, Breathe details how he was able to engineer a wheelchair that could accommodate a ventilator, helping him regain some of his mobility and independence. He then campaigned to help others get out of institutions and participate more fully in society. Read IVUN's recent press release.
The film is directed by Andy Serkis and stars Andrew Garfield and Claire Foy. Cavendish penned an article for PHI (then known as Iron Lung Polios and Multiplegics, Inc.) in the 1966 edition of the Toomey j GAZETTE detailing how he was able to build a wheelchair to accommodate his ventilator. View the article.
Robin Cavendish and wife, Diana, at home. Toomey j GAZETTE, 1966.
VENTILATOR USERS SPEAK
Polio survivor and ventilator user Audrey King was recently featured on Canada's CTV for a story about Ontario's Direct Funding Program. The program is administered by the Centre for Independent Living in Toronto in partnership with the Ontario Network of Independent Living Centres. It is funded by the Ontario Ministry of Health and Long-Term Care.
The Direct Funding Program is intended as an option suited to people with physical disabilities who are willing and able to take on the extra management responsibilities the program demands, such as recruiting, hiring, scheduling and paying their own attendants. The person in need of services becomes the employer (or the self-manager), determining how and when services are provided.
Direct Funding began as a pilot project developed by consumers and the provincial government in 1994. It was so successful that it became a permanent program in July, 1998.
10 Self-Advocacy Tips from INCLUDEnyc
INCLUDEnyc has created a video outlining ten self-advocacy tips young people with disabilities can use to become better advocates for their needs. INCLUDEnyc has worked on behalf of young people with disabilities and their families to have equal opportunity and access to schools, the workforce, and cultural life in New York City for the past 32 years. They serve children from birth to age 26 with any disability and give them the knowledge, confidence, and skills they need to make informed decisions, effectively access and navigate systems and services, and the ability to advocate for themselves and other young people.
Families USA wants you to share your CHIP story
The end of September saw the deadline for renewing the Children's Health Insurance Program (CHIP) come and go. A renewal of the program is being discussed in Congress, but nothing is certain. As states begin to run out of funding, millions of children stand to lose access to quality health care. Overall, CHIP serves 9 million children around the country. Families USA is asking you to share with them how CHIP and Medicaid have helped you or your family members.
CCHS Day 2017
November 11, 2017 is the Third Annual International CCHS Day. Dance ’Til Dawn is the 2017 fundraising/awareness campaign of the CCHS Foundation & CCHS Family Network. The CCHS community and supporters from around the globe are invited and encouraged to participate in an effort to raise awareness and funds for this deserving cause. Participants can host a dance party, participate in a virtual dance party, or raise awareness through social media. Please contact email@example.com with questions, ideas, and/or requests as you consider ways that your family can honor CCHS Day 2017.
Cure SMA Contributes Article to a Special Issue of Gene Therapy
To celebrate the FDA approval of Spinraza, Cure SMA contributed an article to the September special issue of the journal Gene Therapy. The issue, “Spinraza and Advanced Therapies: a stakeholder special,” covers a variety of perspectives and includes comments and review papers from SMA research funders, people affected by SMA, experts in the advanced therapies field, SMA scientists and clinicians, regulators, ethics, pricing, intellectual property experts, and community stakeholders.
Cure SMA’s article, “Cure SMA and our patient community celebrate the first approved drug for SMA,” features Cure SMA’s early contributions to the pre-clinical development of Spinraza and highlights the meaningfulness of an approved therapy to our community. In the article, we celebrate how far we’ve come and the decades of hard work and perseverance by families, researchers, companies, and the FDA to reach this approval.
Not Dead Yet
Not Dead Yet U.K. made a submission in a case brought in the U.K. by Noel Conway, a man with motor neuron disease, in which the High Court ruled against overturning legal protections against assisted suicide.
A spokesperson for Not Dead Yet UK, Juliet Marlow, stated “We welcome the decision by the High Court to reject this attempt to treat terminally ill and disabled people differently by removing vital legal protections. We are looking forward to the national conversation now focusing on the real issue here, which is a lack of adequate social care being provided to people with disabilities. Similarly we need a proper discussion on ensuring adequate palliative care is provided for the terminally ill.”
RECENT RELEVANT PUBLICATIONS
The Growing Need to Mix Pulmonary Medicine and Politics
Phil Porte, Executive Director, NAMDRC
“Over the past several years, the pulmonary medicine community tried its best to convince CMS that its rules [concerning home mechanical ventilation] were problematic, archaic, and costing the Medicare program tens of millions of dollars in unnecessary expenditures. A formal submission to CMS, a request for a National Coverage Determination reconsideration, was denied with a phrase now echoed throughout health care, 'it’s complicated.' The only effective solution is a legislative one.
“Almost regardless of the political environment, it is time to begin working on substantive solutions so that when the political climate improves, pulmonary medicine is ready to move forward with a coordinated cohesive strategy.” Read the full article.
CHEST Physician, September 2017, Vol. 12, No. 9
New Neural Network Can Restore Diaphragm Function after Spinal Cord Injury
“A team of neuroscientists [at Case Western Reserve University School of Medicine] has uncovered a neural network that can restore diaphragm function after spinal cord injury. The network allows the diaphragm to contract without input from the brain, which could help paralyzed spinal cord injury patients breathe without a respirator.” More.
Newswise, Oct 17, 2017
How Teacher Training Hinders Special-Needs Students
“Between 1989 and 2013, the percentage of students with disabilities who were in a general education class for 80 percent or more of the school day increased from about 32 percent to nearly 62 percent.... Students with disabilities who are placed in general-education classrooms get more instructional time, have fewer absences, and have better post-secondary outcomes. Studies also show there is no negative impact on the academic achievement of non-disabled students in an inclusion classroom; those students benefit socially by forming positive relationships and learning how to be more at ease with a variety of people.” Read the full article.
The Atlantic, www.theatlantic.com
New Initiative Creates Scalable Solutions to Improve Care of Patients with Multiple Chronic Conditions
Sasha Walek, Mount Sinai Press Office
“A new report introduced at the meeting, Multiple Chronic Conditions: The Global State, quantifies the health, economic and personal burden weighing on patients, families and healthcare systems. The report found that with each additional chronic condition, healthcare costs more than double, so that treating a patient with four chronic conditions could cost as much as 16 times more than a patient with only one condition. It also revealed that multiple chronic conditions also greatly reduces the patient’s ability to comply with medication, increases the likelihood of depressive symptoms and greatly increases the care burden on families and health facilities.
“The report also found that focusing care around the patient’s overall health and wellbeing as opposed to treating individual diseases in isolation, and by employing better technologies, health systems can actually reduce the cost of care while improving the quality of life for patients. Proposed changes include re-introducing the concept of a family doctor, since the family doctor can coordinate care, creating patient-focused teams of specialists who work better together, improving opportunities for home care, and creating combination therapy drugs that reduce the need for patients to take a large number of different medicines and improve adherence.” Read the full article.
Newswise, Sept 18, 2017
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.
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
Canadian Respiratory Conference 2018
FOCUS Spring 2018
American Thoracic Society 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 20-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA. Registration is now open.
FOCUS Fall 2018
September 14-15, 2018, Fall FOCUS, Hotel Irvine, Irvine, California. More details.
Apria Starts Home Ventilator Training and Monitoring Program to Reduce COPD Hospitalizations
The Apria Clinical Evidence, or ACE, program is aimed at improving the healthcare outcomes of those who are using a non-invasive positive pressure ventilation system. That system — NIPPV for short — delivers oxygen through a plastic face mask rather than an artificial airway.
ACE starts with personalized one-on-one training sessions with a respiratory therapist. Therapists will visit patients’ homes regularly to make sure they are sticking with the treatment plan and using the system as prescribed. If necessary, a therapist can adjust the plan based on a patient’s respiratory health.
From the FDA Voice Blog
FDARA: Making a Difference for Industry and Patients
For decades, user fees paid by the medical products industry have provided critical resources needed to conduct product reviews in a timely fashion and to help ensure the safety and effectiveness of medical products that American patients depend upon.
Since passage of the first medical product user fee act in 1992, the user fee laws and corresponding performance goals and program enhancements have helped evolve the drug and device review process in the United States allowing patients access to new and innovative treatments as quickly as possible without compromising the Agency’s high standards.
As directors of FDA’s three medical product centers, we want to applaud the U.S. Congress for passing the FDA Reauthorization Act of 2017 (FDARA)....full article.