Jesse's Journey Foundation

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Open Letter to Minister: Reduce the Timing Between Doses for Patients with Neuromuscular Diseases

The Honourable Patty Hajdu, P.C., M.P.
Minister of Health
Via email: Patty.Hajdu@parl.gc.ca

Dear Minister Hajdu:

We are a group of physicians, health care workers and stakeholders who care for patients with neuromuscular diseases across Canada. We are writing this open letter to request for patients with neuromuscular diseases to be eligible for vaccination doses earlier than the currently scheduled 4-month interval in patients receiving vaccines requiring dual administration.

We are aware that vaccine supply is limited, however, our responsibility as clinicians and stakeholders lies in informing the public and policy makers on the importance and urgency on this matter. Similar to patients with cancer and transplant, some patients with neuromuscular disease have been included as a priority in many areas in the country, however unlike these at-risk groups, a shorter time frame for second dose vaccination has not been granted to date. This should ideally be at the recommended 28-day interval which was studied in clinical
trials and which offers the highest upfront protection against COVID-19.

Patients with neuromuscular diseases include not only older adults at risk, but also young patients with Duchenne and Becker muscular dystrophies, spinal muscular atrophy, myasthenia gravis, and chronic immune nerve conditions such as CIDP. These individuals may have respiratory involvement, require immunotherapy and are particularly vulnerable to severe and life-threatening effects from contracting COVID-19 infection. Partial protection for some of the most vulnerable and high-risk patients in the country from this devastating disease is
not acceptable, particularly as the virus and variants surge across the country.

We urgently ask that you raise this concern with your fellow health ministers at the provincial and territorial levels. Thank you for your consideration and support during this incredibly trying period for our patients and their families.

Sincerely,

Hans Katzberg, MD, FRCPC, MSc.
Neurologist, University Health Network
Scientist, Krembil Research Institute

Hanns Lochmüller, MD, FAAN
Professor of Neurology | Canada Research Chair in Neuromuscular Genomics and Health
CHEO Research Institute | The Ottawa Hospital | Brain and Mind Research Institute | University of Ottawa
Lead Investigator | Neuromuscular Disease Network for Canada

Stacey Lintern
Chief Executive Officer
Muscular Dystrophy Canada

Perry Esler
Executive Director
Jesse’s Journey

Donna Hartlen
Executive Director
GBS/CIDP Foundation of Canada

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