Press Releases – Page 5 – Muscular Dystrophy Canada

Muscular Dystrophy Canada calls on provincial governments to prioritize persons affected by neuromuscular disorders for COVID-19 vaccine

February 23, 2021 – Many people living with neuromuscular disorders (NMD) are at greater risk of developing serious symptoms and complications as a result of COVID-19 due to their often pre-existing cardiac and respiratory issues and chronic comorbidities. As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments to prioritize people living with hereditary and acquired neuromuscular disorders in their vaccination roll-out.

Specifically, MDC is asking that the following groups of people with neuromuscular disorders be prioritized: adults requiring multiple caregivers or complex ongoing support in the home, community or institutional setting; the caregivers or home care workers who provide ongoing support to children and adults with neuromuscular disorders; adults with severe or unstable respiratory issues; adults with reliance on home ventilation; adults with clinically relevant impairment of heart function; and, adults receiving immunosuppressants.

Muscular Dystrophy Canada appoints new CEO

For immediate release, September 11, 2020 The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as Chief Executive Officer, effective September 9, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012 and has been acting as the interim-CEO since mid-April, 2020. She has extensive experience in the not-for-profit sector and has worked as a senior manager in large health organizations and in government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. During her time with MDC, Stacey has held a range of senior positions. Before taking on the role of CEO, she was the Chief Operating Officer.

Stacey has built an incredible reputation over the last 20+ years working in this field. She has worked with many non-profit boards, helping to build their capacity to thrive and increase their impact.

Stacey knows our clients, their families and the caregiver community. She has developed successful and enduring relationships with many of our key stakeholders and partners. We believe that Stacey’s leadership, skills, talent, her passion for MDC and for the work we all do will help drive the organization forward as we navigate our way through many of the challenges related to COVID-19 and beyond.

Through her visionary leadership and strong commitment to achieving organizational goals, Stacey maintains a focus on maximizing the potential of MDC’s clients, staff and our diverse group of stakeholders and supporters. In both words and actions, Stacey exhibits a clear dedication to building a culture of empowerment, respect, trust, accountability and innovation.

“I am extremely honoured to serve as MDC’s CEO. I am committed and excited to support the neuromuscular community, face the many challenges, lead and work with our dedicated staff, volunteers, donors, partners and many supporters to deliver our critical mission objectives. I know that people are counting on us to make a difference, and we can”.

Stacey started her career in the Nursing field and made the transition to the disability and health sectors with a focus on independent living, community integration and patients directing their care. Stacey is a graduate of York University Executive Leadership Program and the University of Toronto Post Graduate Executive Advanced Business Management Program. And, she looks forward to continuing her education as she enters into the Canadian Health Executive Program offer through the University of British Columbia.

The Board of MDC is committed to doing everything we can to continue to support our clients and their families through this time, and to advocate on their behalf. We are working closely with and fully support Stacey and the entire MDC team in their efforts to ensure the organization remains strong and viable.

For further information, please contact:

Stacey Lintern
Phone: 647-284-8706 or Email : stacey.lintern@muscle.ca

Thank you,
Donna Nixon,
Chair of the Board of Directors,
Muscular Dystrophy Canada

ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, explore our website or call our toll-free number at 1-800-567-2873.

New Partnership Offers Access to Shared Decision Making Support in Ontario

New partnership offers access to shared decision making support for paediatric clients and their families in Ontario

For Immediate Release – June 23, 2020

Ontario, Canada – Muscular Dystrophy Canada (MDC), Children’s Hospital at London Health Sciences Centre (LHSC), and Children’s Health Foundation have entered into a partnership to offer a pilot project providing access to an innovative service that helps paediatric patients and their families make informed decisions throughout their care journey. Through this partnership, Ontario-based MDC clients up to age 18 and their parents and caregivers will have access to virtual Shared Decision Making coaching from Children’s Hospital via Ontario Telemedicine Network (OTN) Technology.

Shared Decision Making is the process where health professionals and patients collaborate on medical decision-making with a more structured method that takes into account both the best evidence and patient values. Health-related decisions can affect the overall well-being and quality of life of both the patient and their family members, and Shared Decision Making has been shown to reduce these psychosocial stressors. The decision coaching provided by Children’s Hospital at LHSC is particularly innovative because it involves unbiased decision support from outside the patient’s circle of care, filling a unique gap that is present in models where only practitioners are directly involved in the decision coaching. For children and youth with neuromuscular disorders and their families, this innovative model becomes all the more valuable as there are many challenging medical and non-medical decisions that must be made over a patient’s health-care journey.

“We are so excited about this collaborative partnership and the benefits our Ontario clients will gain from the Shared Decision Making program. Having support from a Decision Coach will help alleviate some of the fear, stress and pressure parents of children with neuromuscular disorders often experience,” says Stacey Lintern, Interim CEO, Muscular Dystrophy Canada. “This program will also support clients and families in gaining knowledge, evaluating benefits and drawbacks and clarifying priorities which are all integral to a comprehensive approach to making challenging medical decisions. MDC Service Specialists are happy to be able to offer this program as an additional resource to clients as they work with them to navigate and access critical supports.”

The Shared Decision Making partnership is in line with MDC’s commitment to client and family-centred care. MDC currently takes a client and family-centred approach to delivering its mission across Canada by offering a Systems Navigation program, which provides critical support not only in ensuring clients have access to the right resources but also by playing a key role in providing education, developing networks and connections, working in partnership to address barriers and share resources, enhancing life skills and self-coping strategies and embracing inclusion. The Shared Decision Making program includes education, tools, strategies and information. The partnership will provide MDC clients with a seamless process, allowing them to access the right resources at the right time.

“We are incredibly pleased to be able to partner with Muscular Dystrophy Canada to extend our decision coaching service to other patients and families across Ontario,” says Dr. Craig Campbell, Interim Chair of Paediatrics at Children’s Hospital at LHSC. “The Children’s Hospital team, with the support of our Children’s Health Foundation, has been able to develop a unique expertise in this area over the last two-years, and engaging in this new partnership is a rewarding recognition of that. We look forward to furthering our support of Ontario patients and families as they make important care decisions about their child’s neuromuscular disorder.”

The province-wide pilot project aims to collect data that will demonstrate the need for broader investment into a systemic-approach to the availability of decision coaching for all patients and families impacted by neuromuscular disorders across Canada.

Access support now.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

ABOUT LONDON HEALTH SCIENCES CENTRE

London Health Sciences Centre has been at the forefront of medicine in Canada for 145 years and offers the broadest range of specialized clinical services in Ontario. Building on the traditions of its founding hospitals to provide compassionate care in an academic teaching setting, London Health Sciences Centre is home to Children’s Hospital, University Hospital, Victoria Hospital, the Kidney Care Centre, two family medical centres, and two research institutes – Children’s Health Research Institute and Lawson Health Research Institute. As a leader in medical discovery and health research, London Health Sciences Centre has a history of over 70 international and national firsts and attracts top clinicians and researchers from around the world. As a regional referral centre, London Health Sciences Centre cares for the most medically complex patients including critically injured adults and children in southwestern Ontario and beyond. The hospital’s nearly 15,000 staff, physicians, students and volunteers provide care for more than one million patient visits a year. For more information visit www.lhsc.on.ca

ABOUT CHILDREN’S HEALTH FOUNDATION

Children’s Health Foundation, founded in 1922, raises funds to ensure that children and their families across Western Ontario receive the best possible care and the most possible hope when faced with a life-threatening or life-limiting diagnosis. By funding equipment, programs and research at Children’s Hospital at London Health Sciences Centre, Thames Valley Children’s Centre and Children’s Health Research Institute, Children’s Health Foundation ensures better childhoods for kids facing serious health issues, and hope, relief and support for those who love them. To learn more, visit childhealth.ca.

Media Contact

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

New partnership will provide cough assists for adults in British Columbia

Vancouver, British Columbia – British Columbians living with a neuromuscular disorder will soon be able to breathe easier thanks to a partnership between Muscular Dystrophy Canada (MDC) and Technology for Living (TFL).

The partnership will provide cough assists for adults in BC, who do not have access to this critical piece of respiratory equipment, and to evaluate their health outcomes. Currently, provincial funding for cough assists is only available for children up to the age of 18.

Neuromuscular disorders can contribute to tremendous respiratory challenges; persons impacted are prone to infections and pneumonia. Cough assists can help to prevent these types of complications and improve quality of life. Best practice is that individuals with a neuromuscular disorder that have respiratory involvement start using a cough assist at approximately eight years of age. Unfortunately, once a person reaches adulthood, funding in British Columbia is limited and most people don’t have the financial means to purchase a cough assist themselves.

TFL’s Provincial Respiratory Outreach Program (PROP) provides education, equipment and respiratory assessments for people living with neuromuscular disorders in BC. Under this new partnership, adults who are registered with MDC can apply for a cough assist through PROP.

“It’s thanks to the support of donors, fire fighters, event participants and our family of chapters, that MDC is able to participate in this partnership with PROP to provide cough assists and evaluate the health outcomes of the individuals receiving this vital equipment,” said Stacey Lintern, Interim CEO, Muscular Dystrophy Canada.

“This partnership will help to address the respiratory support needs of the neuromuscular community in British Columbia. However, this funding will only address a small portion of the need,” continues Lintern. “Persons impacted with neuromuscular disorders need access to cough assists; and, we’re committed to working with PROP and the provincial government to provide access regardless of age.”

“As more people with health conditions are living and working at home, it is important that health services meet those needs. In this particular need, it is supporting the basic act of coughing to clear secretions, to keep the lungs healthy,” says Esther Khor, Registered Respiratory Therapist, Manager of PROP. “PROP is excited to collaborate with Muscular Dystrophy Canada, to support the trialing of cough assists in the home. The goal is to learn, identify and support solutions for individuals with neuromuscular conditions. Together with Muscular Dystrophy Canada, we are taking a step together to keep respiratory health a priority.”

ABOUT MUSCULAR DYSTROPHY CANADA (MDC)
Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. Learn more about MDC online, or call our toll-free number at 1-800-567-2873.

ABOUT TECHNOLOGY FOR LIVING
Technology for Living (TFL) works with people who have severe physical disabilities and helps them to live as well, and as independently as possible. Their Provincial Respiratory Outreach Program provides education, equipment and therapy for people living with neuromuscular disorders or chest wall restriction. To learn more about TFL, please visit technologyforliving.org/ or call 1-866-326-1245.

MEDIA CONTACT INFORMATION:
Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

Fire Fighters Fill the Boot Campaign Goes Virtual

For Immediate Release. May 5, 2020

Toronto, Ontario – For an incredible 65 years Fire Fighters across Canada have helped Fill the Boot. Unfortunately, due to COVID-19, Fire Fighters had to cancel their fundraising efforts this Spring, but the needs of people impacted by neuromuscular disorders can’t be cancelled. MDC still needs to provide critical services and programs to our clients.

Fire Fighters and MDC want to keep the tradition of helping to Fill the Boot going and since Fire Fighters can’t physically be out in their communities asking people to help, we have created a virtual Fill the Boot campaign.

With the help of many supporters, including Owen McGonigal who kicked off the campaign with the first #filltheboot video, we are able to keep Fill the Boot efforts going this year.

“I look forward to seeing our local Fire Fighters out in the community every year. They are an incredible support and inspiration to the neuromuscular community,” says Owen. “I challenge all of you to join me and post your own video, make a donation and challenge your friends. Together, we can support Fire Fighters and all Canadians impacted by neuromuscular disorders.”

Supporters can post their #filltheboot video on social media, donate at filltheboot.ca and challenge three friends to do the same! Visit us on Facebook, Instagram and Twitter to see the #filltheboot campaign in action!

“We’re so excited about this campaign and the opportunity to move our fundraising efforts to the virtual world. During such an unprecedented and uncertain time, one thing we know we can always count on is unwavering support from Fire Fighters,” says Stacey Lintern, Interim CEO of Muscular Dystrophy Canada. “Fire Fighters have supported MDC since its inception in 1954, we are incredibly grateful for their continued dedication to our cause and our clients”.

Find out more by visiting filltheboot.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

Stacey Lintern appointed Interim CEO at Muscular Dystrophy Canada

For immediate release. April 27, 2020

Toronto, Ontario – The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as interim Chief Executive Officer, effective April 22, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012, and has worked in the not-for-profit sector for over 20 years. She has worked as a senior manager in large health organizations and in the government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. She has held a range of senior positions at Muscular Dystrophy Canada, most recently as Chief Operating Officer.

Stacey is highly regarded by colleagues, clients and stakeholders and her skills and talent will be particularly helpful as the organization navigates the challenges related to Covid-19.
We are committed to doing everything we can to continue to support our clients and their families and to advocate on their behalf.

The Board wishes to thank the outgoing Chief Executive Officer, Barbara Stead-Coyle, who has resigned, for her contribution to the organization.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Stacey Lintern
Muscular Dystrophy Canada
Stacey.Lintern@muscle.ca
647-284-8706
1-800-567-2873 x1104

Muscular Dystrophy Canada makes the difficult decision to reduce staff

For Immediate Release – April 8, 2020

Toronto, Ontario – Muscular Dystrophy Canada (MDC) announced that they have temporarily reduced their staff by 17 people in positions across the organization, at all levels.

“We considered all our options before coming to this extremely difficult decision. Of paramount importance was our ability to maintain core services to our clients,” commented Board Chair, Donna Nixon. “MDC’s staff are our most valuable asset in this respect. But the very necessary measures to stem the spread of Covid-19 have resulted in the cancellation of key fundraising events, until further notice. Balancing service to our clients with the financial sustainability of MDC has been uppermost in our minds.”

MDC will continue to deliver critical programs and services, and our Service Specialists remain available to our clients and families.

“We are committed to supporting our clients and families, volunteers, fire fighters, donors and partners. They are the lifeblood of MDC, and they need our support now more than ever. For staff impacted, we will continue their medical and dental benefits, ensure they have access to our Employee Assistance Program, and help them transfer to the appropriate government programs,” said CEO, Barbara Stead-Coyle. “MDC is a family and we must do all we can to work together during this unprecedented time.”

The Board of Directors is working hand-in-hand with MDC’s Executive Leadership to closely manage MDC’s response to the pandemic. MDC has stepped up online communications to our community, including virtual events such as weekly client support sessions. All information will be posted on our website www.muscle.ca, and through our social media channels.

MDC has also signed onto many sector-wide initiatives aimed at advocating for further financial assistance for health charities and Canadian not-for-profits more broadly. Imagine Canada is currently lobbying the federal government for an emergency stabilization fund for the country’s charities that would include cash grants and interest-free loans.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

COVID – 19: What you should know about this novel coronavirus

Given the recent updates on COVID-19, Muscular Dystrophy Canada has implemented a work from home policy, therefore, effective immediately all MDC offices are closed.
Our staff remain available via email and telephone and will continue to serve our clients, volunteers, donors and other key stakeholders.
During this difficult time, we remind everyone that social distancing is a critical component of reducing the potential harm.
In the coming days, MDC will continue to provide updates as we strive to implement new online platforms and solutions to support our community.
We recommend that everyone continue to be informed by credible sources like the World Health Organization, the Public Health Agency of Canada and provincial health agencies.
Thank you for your continued support and cooperation.
Barbara Stead-Coyle
CEO

COVID-19, is a coronavirus, that is known to cause respiratory infections in individuals who contract the virus. Symptoms include dry cough, fever, tiredness and difficulty breathing, and may take up to 14 days to appear after exposure. Since people with neuromuscular disorders already experience respiratory challenges, it is understandable that you would have concerns and questions about COVID-19.

How to prevent infections

The steps outlined below are good practice, at all times, to inhibit the spread of viruses:

Wash your hands thoroughly and regularly with soap and water.
Sneeze and cough into your sleeve; when using tissues, immediately put them in the trash and wash your hands.
Avoid touching your eyes, nose or mouth.
Regularly clean commonly used surfaces and devices you touch.
Avoid crowded spaces and close contact with anyone that has a fever or cough.

How you can prepare

You should always have a plan in place should you, or a loved one, become ill. You should have:

A list containing the names of your doctors, clinic, pharmacy and insurance company along with contact information.
A list of all your medications and the doses.
Enough medication for one to two weeks in case you cannot get to the pharmacy to refill your prescriptions.
Extra supplies like, hand sanitizers and soap to wash your hands.

For more information please visit the Government of Canada’s website.

How to avoid disruptions to care services for individuals with neuromuscular disorders

Screen: Have a sign posted at the entrance of your home for your caregivers and attendants to self-screen and review the precautionary measures they can take while in your home.
Greetings: Have your caregivers and attendants say hello without touching (e.g., a wave hello)
Wash Hands: Have your caregivers and attendants wash their hands for at least 20 seconds with soap carefully and repeatedly (throughout the day).
Sanitize: Have your caregivers and attendants use hand sanitizer (at least 60% alcohol-based) when they arrive at your home and each time prior to touching or feeding you.
Disinfect: Have your caregivers and attendants clean, sanitize and disinfect the surfaces that are touched in your and use disinfecting wipes on items that are frequently touched (e.g., cell phones, doorknobs, your wheelchair controls, lifting device controls, and remote controls). Make this convenient by having wipes near the items that should be regularly cleaned.
Back Up: If your attendant becomes sick, ask them to seek medical care. Ensure you have sufficient back up attendants in case your caregivers and regular attendants cannot work; your attendants may not be able to work because either they get sick or they need to take care of a family member who is. You will still need assistance, so make sure you have someone who can provide it.

What to do if you think you might have the infection

Public Health Agency of Canada
Government of Canada novel coronavirus toll-free info line: 1-833-784-4397
Government of Canada Travel Advisories
World Health Organization

Response to PMPRB Draft Guidelines Consultation

February 14, 2020

Dr. Mitchell Levine
Chairperson
Patented Medicines Prices Review Board
333 Laurier Avenue West, Suite 1400 Ottawa, Ontario K1P 1C1
Email: PMPRB.Consultations.CEPMB@pmprb-cepmb.gc.ca

Dear Dr. Levine:

Muscular Dystrophy Canada is thankful for the invitation to attend the PMPRB Consultation meeting in Ottawa on December 10, 2019 and for the opportunity to respond to the Draft Guidelines Consultation.

Muscular Dystrophy Canada leads Canada’s neuromuscular community as the central axis in a complex health services, policy, and information ecosystem that surrounds and support our core concern: Canadians with neuromuscular disorders. Muscular Dystrophy is the umbrella name used to cover the 160-plus known neuromuscular disorders today. While the disorders we represent are individually rare, they are collectively common, impacting more than 50,000 Canadians from coast to coast. These disorders weaken the body’s muscles, or the communication between the nerves and the muscles. The causes, symptoms, age of onset, severity and progression vary depending on the individual and the exact diagnosis. For many individuals, the disorder is fatal. Currently, there is no cure for these disorders. We believe that neuromuscular disorders will one day be cured (with treatments and therapies), and that our organization will be a positive contributor to that outcome by: investing in innovative research that has potential for real-world impact; providing programs and support services for those impacted by neuromuscular disorders, their caregivers and families, health professionals and researchers; and remaining committed to advocating for fair and patient-centric policies that improve the lives of all Canadians with neuromuscular disorders.

Currently, the range of treatments and therapies available to support impacted individuals can come with a heavy financial burden and a significant economic impact. As an organization, we are passionate in the belief that every Canadian with a neuromuscular disorder deserves to benefit from leading-edge discoveries in the research field in a timely manner and equal access to the best treatments. Muscular Dystrophy Canada together with members of its Medical and Scientific Advisory Committee are of the strong belief that, if PMPRB guidelines are enacted as proposed, the amendments may result in unfavorable consequences as described below:

Significant decreases in price will result in delays in manufacturers launching their product in Canada and this will have a negative impact on the overall length of time that it takes for Canadians to have access to new medicines in Canada, if at all. We are seriously concerned that Canadians with neuromuscular disorders will, in fact, see a decline in innovative medicines access. Members of our Medical and Scientific Committee Dr. James Dowling (Hospital for Sick Children, Toronto), Dr. Ronald D. Cohn (Hospital for Sick Children, Toronto), and Dr. Craig Campbell (Children’s Hospital London Health Sciences Centre, London) together published an article in April 2018 in the Journal of Medical Genetics that emphasizes: “many exciting treatment approaches are currently in clinical trial, and several have achieved conditional or full market approval in various regions of the world. Many other treatments are in the pipeline, and we predict that over the next decade meaningful therapies will become widespread across the neuromuscular disease spectrum.”

In addition to compromising timely access to new therapies for patients with neuromuscular disorders, Muscular Dystrophy Canada is profoundly concerned about the impact the pricing changes will have on the health research infrastructure of Canada. Although PMPRB confidently notes that pricing is not a significant determinant to bringing clinical research to Canada, the Life Sciences Ontario (2019) survey says otherwise. In that survey, 91% of pharmaceutical executives said the changes would have a negative effect on clinical research in Canada, with 44% saying the negative effect would be “significant.” There will be significant adverse impact of the proposed changes on research incentives and investments, which is important as we are on the verge of life-changing therapies and treatments for individuals with neuromuscular disorders.

While we support the efforts to lower the costs of prescription drugs for Canadians, we strongly believe that this must be done in a way that ensures timely access by Canadians to new medicines and to clinical studies of new medicines. Our recommendations are in line with those proposed by Health Charities Coalition Canada (HCCC) and we strongly echo the discussion outlined in their thorough and carefully well thought-out submission. We suggest you carefully review our submissions and take into account these four key recommendations:

Recommendation #1:

That the PMPRB undertake a stepwise approach to its proposed changes by initially enacting only the changes to the comparator countries. Once the impact of this change is fully understood and if the objective of lowering Canadian prices sufficiently has not been met, then other new elements could be considered.

Recommendation #2:

That a multi-stakeholder dialogue be established to evaluate the impact of the changes on availability of medicines and specifically to inform any decision on whether and how to implement the use of the new economic criteria.

Recommendation #3:

That the Federal Government require PMPRB to hire a third party to conduct a formal assessment of the potential and real-time impacts of the reforms on research investment and activity in Canada (including clinical trials).

Recommendation #4:

That the Federal Government require that PMPRB, along with other appropriate agencies, immediately establish a formal mechanism for meaningfully and continuously engaging patient representatives in its decision-making and processes to ensure patient voice, choice and representation.

Thank you for the opportunity to review the guidelines and provide comments. We remain committed to working with the Federal Government and the broader stakeholder community in defining an implementation and evaluation process that will address both cost savings and access

to innovation that will optimally serve the needs of individuals with neuromuscular disorders in Canada. We wish our feedback will be taken into consideration as you prepare the final guidelines and we would be happy to answer any questions you might have.

Kind Regards,
Muscular Dystrophy Canada