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Volunteer Advocate

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OPEN LETTER to elected officials and policymakers in Canada’s drug review and reimbursement system from cystic fibrosis clinicians
September 17, 2020

More than 70 Canadian cystic fibrosis clinicians are imploring the government to fix Canada’s broken drug review and reimbursement system that is impacting access to life-changing drugs, specifically Trikafta. This show of public support from the medical community, facilitated by Cystic Fibrosis Canada, follows the recent release of a Canadian study demonstrating that early access to Trikafta would result in dramatic health benefits for up to 90% of Canadians living with CF and that further delays to access will tragically result in preventable deaths. Read on for the open letter.

Dear Canadian Government officials,

Based on the Canadian Cystic Fibrosis Registry, a baby born with cystic fibrosis (CF) in Canada in 2018 has only a 50% chance of living to 52.1 years and will endure significant health-related disabilities.

The impact for people living with cystic fibrosis is significant. They must spend at least two hours daily doing treatment, taking medication, wearing masks, using inhalers, sanitizing constantly and frequently missing school and work while spending time in the hospital. There is also the prospect of requiring a future lung transplant.

There is a way that we could alleviate this suffering, however, Canada’s drug review and reimbursement system stands in the way.

Trikafta is a breakthrough drug, with the potential to treat 90% of people living with cystic fibrosis. Canadian research recently published in the Journal of Cystic Fibrosis demonstrates that access to this medication in 2021 would result in profound health benefits for people living with cystic fibrosis. By 2030, Trikafta could reduce the number of people living with severe lung disease by 60% and reduce the number of deaths by 15%. The research projects a significantly slower progression with an 18% increase in people with mild lung disease and 19% fewer hospitalizations or home intravenous antibiotics for pulmonary infection exacerbations. The estimated median age of survival for a child born with cystic fibrosis would increase by 9.2 years.

Instead, we wait. Trikafta was fast-tracked for access in the U.S. and Europe. It is not available in Canada.

The disease is devastating and difficult to treat. Since the Canadian discovery of the cystic fibrosis gene, cystic fibrosis clinicians and scientists have made a significant difference in our ability to help people with this disease. But nothing has come close in effectiveness to the breakthrough drug Trikafta.

It is heartbreaking to have to tell patients, again and again, that the drug that could dramatically improve and extend their lives is not available in Canada. It’s even worse when these people discover that a major hurdle is a broken system that does not prioritize precision medicines for rare diseases like cystic fibrosis -- a system so complicated and unfavorable to innovation that this drug’s manufacturer has not even submitted it for approval in Canada.

Time is of the essence. As the study’s senior author Dr. Anne Stephenson said, “delays in access to Trikafta will come at significant cost, in terms of health outcomes, health care costs and ultimately lost lives.” As clinicians, we call on you today to fix Canada’s broken drug review and reimbursement system. Federal policies have so far impeded access to precision medicines like Trikafta.

  • Ensure that the new guidelines for the Patented Medicine Prices Review Board include a pathway for precision medicines like Trikafta.
  • Urge the pan-Canadian Pharmaceutical Alliance to negotiate openly and fairly with manufacturers.
  • Establish a “fast-track” approval mechanism for orphan medications for rare diseases, specifically for Trikafta.

The research is conclusive. Our patients desperately need this drug. Canada, what are you waiting for?

Yours sincerely,

First name Last name Job title Clinic Province
Kewan Aboulhosn Adult CF Physician Royal Jubilee Hospital, Victoria BC
Darryl Adamko Professor Jim Pattison Children's Hospital Saskatchewan
Martha Ainslie Section Head, Adult Respirology Health Sciences Centre Winnipeg Manitoab
Wendy Alexander SJRH Clinic Director Saint John Regional Hospital New Brunswick
Anju Anand Adult CF Physician St. Michael's Hospital, Toronto  
Nicholas Avdimiretz Pediatric Respirologist Stollery Children's Hospital Alberta
Paula Barrett CF Nurse Coordinator IWK Health Centre Nova Scotia
Christelle Bergeron Adult CF clinic co-director CIUSSS de l'Estrie - CHUS Quebec
Zoheir Bshouty Respirologist Health Sciences Centre, Winnipeg Manitoba
André Cantin Adult CF Clinic physician CHUS Sherbrooke Quebec
Meredith Chiasson Adult CF Clinic Physician QE II Health Sciences Centre, Halifax Nova Scotia
Mark Chilvers Pediatric Clinic Director BC Childrens Hospital British Columbia
Melanie Chin Adult CF Physician The Ottawa Hospital Ontario
Kamalprit Chokar Adult CF Research Assistant St. Michael's Hospital, Toronto Ontario
Terry Colbourne Adult Respirologist Health Sciences Centre, Winnipeg Manitoba
Sophie Corriveau Assistant Professor McMaster Adult CF Clinic Ontario
Patrick Daigneault Clinic Director Centre Mère-Enfant du CHU de Quebec Quebec
Michael Derynck Pediatric Clinic Director Kingston Health Sciences Centre Ontario
Jacquelyn Dirks Adult Respirologist Health Sciences Centre Winnipeg  
Matouk Elias Adult CF Clinic Director Montreal Chest Institute Quebec
Chrstopher Ewing Pediatric Respirologist Stollery Children's Hospital Alberta
Majdeline Farah Adult CF clinic co-director Hopital de Rouyn Noranda Quebec
Andreas Freitag Adult CF Physician/Clinic Director McMaster University Medical Centre, Hamilton Ontario
Gary Galante CF Clinic Physician/Gastroenterologist Alberta Children's Hospital, Calgary Alberta
Tanja Gonska Pediatric and Adult CF/GI physician The hospital for Sick Children, SMH Toronto The Hospital for Sick Children and St. Michael's Hospital, Toronto Ontario
Steeve Goulet Clinic Director CISSS BSL Hôpital de Rimouski Quebec
Katie Griffin Adult CF Research Coordinator St. Michael's Hospital, Toronto  
Jody
Hainstock-Beavis CF Nurse Clinician
  Health Sciences Centre Winnipeg Manitoba
Katie Huynh Adult CF Clinic Registered Nurse St. Michael's Hospital, Toronto Ontario
Shaikh Iqbal Pediatric CF Clinic Director Winnipeg Children's Hospital Manitoba
Mary Jackson Adult Clinic Director St Marys Hospital,Kitchener Ontario
Amanda Jober Peds CF Nurse Coordinator Stollery Children's Hospital Alberta
Lianne Kopel Assistant Professor Montreal Children's Hospital Québec
Grace Lam Assistant Professor Edmonton Adult Cystic Fibrosis Clinic Alberta
Larry Lands Clinic Director Montreal Children's MUHC Quebec
Eva Leek Adult CF Respiratory Therapist St. Michael's Hospital, Toronto Ontario
Winnie Leung Clinic Director Edmonton Adult Cystic Fibrosis Clinic Alberta
Jim Lewis Clinic director LHSC, London Ontario
Kris Lischynski  Mental Health, Adult CF team Health Sciences Centre, Winnipeg Winnipeg
Diane Lougheed Adult Clinic Director Kingston Health Sciences Centre Ontario
Piush Mandhane Pediatric Respiratory Divisional Director Stollery Children's Hospital Alberta
Lisa Mannik Adult CF Registered Dietitian St. Michael's Hospital, Toronto Ontario
Martha McKinney Clinic Director Saskatoon Pediatric Cystic Fibrosis Clinic Saskatchewan
Kassandra McMurray Pediatric Social Worker Stollery Children's Hospital Alberta
Marcel Milot Pediatric Clinic Director CIUSSS du Saguenay-Lac-St-Jean Quebec
Lenna Morgan Pediatric Clinic Director Windsor Regional Hospital Ontario
Nancy Morrison Medical Director, Adult CF Clinic QE II Health Sciences Centre, Halifax Nova Scotia
Kimberley Mulchey Adult respirologist, CF team member Health sciences centre Winnipeg MB
Michael Parkins Clinic Director Calgary Adult CF Clinics Alberta
Linda Pedder Paediatric Clinic Director McMaster Children's Hospital, Hamilton Ontario
Linda Pineau Pediatric Clinic Director Grand River Hospital, Kitchener Ontario
Meghan Pohl Peds CF Dietitian Stollery Children's Hospital Alberta
Clara Popa Pediatric Clinic Director Hopital de Rouyn Noranda Quebec
Nancy Porhownik Clinic Director Health Sciences Centre, Winnipeg Manitoba
April Price Paediatric Clinic Director London Health Sciences Centre Ontario
Clare Ramsey Adult Respirologist Health Sciences Centre, Winnipeg Manitoba
Felix Ratjen CF center Sickkids, Toronto Ontario
Joe Reisman Paediatric Clinic Director Children's Hospital of Eastern Ontario, Ottawa Ontario
Lyne Rivard Clinic Director CIUSSSE de l'Estrie CHUS Sherbrooke Quebec
Ronalee Robert Adult CF Dietitian St Michael's Hospital, Toronto Ontario
Cathy Schellenberg in patient pulmonary nurse Stollery Children's Hospital  
Adam Shapiro Associate Professor Montreal Children's MUHC Quebec
Melinda Solomon Pediatric Clinic Director The Hospital for Sick Children, Toronto Ontario
Anne Stephenson Adult CF Physician St. Michael's Hospital, Toronto Ontario
Julian Tam Clinic Director Saskatoon Adult Cystic Fibrosis Clinic Saskatchewan
Lindsay Tempel Peds CF Nurse Stollery Children's Hospital Alberta
Annie Thomas-Diceman Adult CF Clinic Social Worker St. Michael's Hospital, Toronto Ontario
Elizabeth Tullis
Adult Clinic Director
St. Michael's Hospital, Toronto Ontario
Gokul Vidyasankar Clinic Director Health Sciences Centre, St. John's Newfoundland
Valerie Waters CF Physician, Infectious Diseases The Hospital for Sick Children, Toronto Ontario
Brent West Respiratory Therapist St.Michael's Hospital, Toronto Ontario
Sandee Westell Adult CF Nurse Coordinator St. Michael's Hospital, Toronto Ontario
Aaron Young Adult CF Physician/Clinic Director Royal Jubilee Hospital, Victoria BC
Zofia Zysman-Colman Clinical Assistant Professor CHU Sainte-Justine Quebec

Find out more about actions you can take to help advocate for Trikafta.


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