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Open letter from CF clinicians calling upon provincial governments to make Trikafta accessible to everyone who could benefit from it
October 1, 2021

Over 50 CF clinicians from across Canada have added their names to the open letter to provincial governments calling for access to Trikafta for everyone would could benefit from it. They are asking provincial Health Ministers to immediately fund Trikafta for all who could benefit and to empower CF physicians to manage their patients’ access based on the evidence based clinical guidelines they have developed.

Dear Ministers of Health,

We are writing to you today regarding the recent CADTH recommendations for Trikafta, an innovative medication that has revolutionized the treatment of cystic fibrosis (CF). If followed, CADTH’s recommendation will limit access to Trikafta to only those patients with lung function of ≤90%. We strongly disagree with this opinion and are writing to provide you with an alternate recommendation from the physicians, researchers and health care professionals who specialize in cystic fibrosis.

We have detailed why we disagree with this eligibility criteria in recent correspondence to you, which can be found here, but the most important thing for you to know is that one in four Canadians who could benefit from Trikafta will not have access to it if you choose to accept the access criteria recommendations from CADTH.

The CADTH recommendation ignores the real-world clinical evidence that Trikafta improves lung function for patients with greater than 90% lung functions. Waiting until a patient has less than 90% lung function means allowing structural and irreversible lung damage to accumulate before treatment can begin. The best treatment for CF is preventing the disease from progressing. That is why your province has implemented newborn screening for CF and why treatment starts immediately on diagnosis. That is why, with only one exception, no other jurisdiction in the world has imposed this barrier to access.

This threshold also unjustly discriminates against adolescents and children with CF. Many teens with CF and three quarters of 6-11 yr-olds with CF have lung function above the 90% threshold, but still have to suffer with progressive lung damage, infections, hospitalizations, and complex daily treatment regimens.

It is not an exaggeration to say that the impact of this new therapy, Trikafta, is dramatic. A study, led by researchers at Dalhousie University, The Hospital for Sick Children (SickKids) and St Michael’s Hospital, demonstrated that early introduction of Trikafta in 2021 would result in life-changing health improvements by 2030 in comparison to no drug available, including:

  • 15% fewer deaths
  • Increase in estimated median age of survival by 9.2 years
  • 60% fewer people living with severe lung disease due to cystic fibrosis, and
  • 18% increase in people living with only mild lung disease
  • 19% fewer hospitalizations or home intravenous courses for chest infections

A reduction in the number of transplants that are required for severe lung diseaseAs you know, the CADTH recommendation is not binding on any government. You can make Trikafta available to every Canadian in your province who can benefit from this drug.

In its final recommendation, CADTH recommends “(p)rescribing of ELX-TEZ-IVA [, or Trikafta,] and monitoring of treatment response should be limited to CF specialists.” We sincerely recommend that you extend that trust of CF specialists to the proper initiation and coverage criteria as well. We, Canada’s cystic fibrosis medical experts, are sharing with you our recommendations on the appropriate use of Trikafta. We recommend that you immediately fund Trikafta for all who could benefit and that you empower your CF physicians to manage their patients’ access based on the evidence based clinical guidelines they have developed.

Ministers, time is of the essence. With every day that passes, the health of many of our patients who could benefit from this drug worsens. We ask that you give us the tools we need to save lives and improve the lives of thousands of Canadians. Because CF can’t wait.

Yours sincerely,

First name Last name Job title Clinic Province
Musawir Ahmed Respirologist, CF adult clinic HSC Winnipeg  Manitoba 
Tareq Alabdoulsalaam Respirologist  Pediatric CF clinic Children's Hospital Winnipeg Manitoba 
Wendy Alexander Paediatrician Saint John Regional Hospital New Brunswick
Christian  Allard Adult respirologist CIUSSS Saguenay-Lac-St-Jean Québec
Jocelyn Arpin Cf Nurse Clinician  Children's Hospital Winnipeg Manitoba 
Paula  Barrett CF Nurse Coordinator for 32 years IWK Heath Centre, Halifax Nova Scotia
Christelle Bergeron Adult Respirologist CIUSSS de l'Estrie - CHUS Quebec
Deb Bester Registered Respiratory Therapist Grand River Hospital Pediatric CF Clinic Ontario
Graham Bishop Respirologist, CF adult clinic Saint John Regional CF Clinic New Brunswick
Jerry Boun Pharmacist Grand River Hospital Ontario
André Cantin Respirologist, CF adult clinic CIUSSSE CHUS Québec
Meredith Chiasson Respirologist, CF adult Clinic Nova Scotia Health Nova Scotia
Juliegh Clarke Physiotherapist Jim Pattison Children's Hospital Saskatchewan
Sophie Corriveau Respirologist, CF Adult Clinic McMaster Ontario
Patrick Daigneault Pediatric Respirologist-Clinic director Centre Mère-Enfant du CHU de Québec Québec
Karen Doyle nurse practitioner CF program Janeway Children's Health and Rehabilitation Centre/ HSC
Christopher Ewing Pediatric Respirologist Edmonton Pediatric CF Clinic Alberta 
Majdeline Farah Respirologist, CF adult clinic CISSSAT Quebec
Mallory Fox Pediatrician Grand River Hospital Pediatric CF Clinic Ontario
Kate Gent Nurse Practitioner Hospital for Sick Children Ontario
Kirsten  Gordon CF Nurse Coordinator Victoria Adult Clinic BC
Steeve goulet adult respirologist CISSS Rimouski Quebec
Jody  Hainstock-Beavis  CF Nurse Clinician  HSC Winnipeg  Manitoba 
Joanne Hammel CF Nurse Coordinator Children's Hospital of Eastern Ontario
Peter Hogan Pharmacist Saint John Regional CF Clinic New Brunswick
Shaikh  Iqbal Respirologist  Pediatric CF clinic Children's Hospital Winnipeg Manitoba 
Amanda  Jober RN- Nurse Coordinator  Edmonton Pediatric CF Clinic Alberta 
Steven Kent Paediatrician Victoria Pediatric Clinic BC
Aboulhosn Kewan Respirologist, Adult CF Clinic Adult Clinic Victoria British Columbia
Grace Lam Adult Respirologist Edmonton Adult CF Clinic Alberta
Larry Lands Pediatric Respirologist McGill University Health Centre-Montreal Children's Hospital Quebec
Winnie Leung Adult respirologist Edmonton Adult CF Clinic Alberta 
Diane Lougheed Adult Respirologist Kingston Adult CF Clinic Ontario
Rogers Lynn Registered Dietitian Grand River Hospital Pediatric CF Clinic Ontario
Elizabeth MacCready CF Nurse Coordinator Saint John Regional CF Clinic NB
Dimas Mateos Pediatric Respirologist IWK Nova Scotia 
Marianne McKenna Pediatrician SJRH NB
Martha McKinney Pediatric Respirologist Edmonton Pediatric CF Clinic Alberta
Solomon Melinda Pediatric Respirologist Sick Kids Hospital, Toronto Ontario
Julie Milot Adult respirologist IUQCP Quebec
Marcel Milot Pediatrician CIUSSS Saguenay-Lac-St-Jean Québec
Laura Moniz CF Nurse clinician  Children's Hospital Winnipeg Manitoba 
Lenna Morgan Paediatrician Windsor Pediatric CF Clinic Ontario
Nancy Morrison Respirologist, CF Adult Clinic QE II HSC, Halifax Nova Scotia
Lashen Naidoo Pharmacist Grand River Hospital Pediatric CF Clinic + SMGH Adult CF clinic Ontario
Linda Pineau Paediatrician Grand River Hospital Ontario
Nancy Porhownik Respirologist, CF adult clinic HSC Winnipeg  Manitoba 
Bradley  Quon Respirologist, CF adult clinic St. Paul's Hospital British Columbia
Jonathan Rayment Pediatric Respirologist BC Children's Hospital BC
Joe Reisman Pediatric Respirologist CHEO CF Clinic, Ottawa Ontario
Lynn Rivard Pediatrician CIUSSSS CHUS Sherbrooke Quebec
Eve Routhier CF Nurse Coordinator IUCPQ Quebec
Marryanne Schlosser Pharmacy Technician Grand River Hospital Pediatric CF Clinic Ontario
Mary Jane Smith Pediatrician Janeway Children's Health and Rehabilitation Centre Newfoundland
Anne Stephenson Respirologist, CF adult clinic St. Michael's Hospital Ontario
Sarah Sutherland CF Nurse Coordinator Nova Scotia Health  Nova Scotia 
Julian Tam CF Clinic Director Royal University Hospital Saskatchewan
Laurie Trace Registered Social Worker Grand River Hospital Pediatric CF Clinic Ontario
Arlene Valenta CF Nurse Coordinator Grand River Hospital Pediatric CF Clinic Ontario
Rafiaa Valji Respirologist  Pediatric CF clinic Children's Hospital Winnipeg Manitoba 
Pearce Wilcox Adult Respirologist St Paul's Hospital/UBC BC
Pierce Wilcox CF Clinic Director St. Paul's Hospital British Columbia
Aaron Young Respirologist, Adult CF Clinic Adult Clinic Victoria British Columbia
Zofia Zysman-Colman Pediatric Respirologist CHU Sainte-Justine
Tess  Din


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