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Volunteer Advocate

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Letter to Provincial Health Ministers and drug program managers
April 29, 2020

The following is a copy of a letter sent to Provincial Health Ministers and Drugs Program Managers on April 29, 2020, by Cystic Fibrosis Canada President & CEO, Kelly Grover.

 Dear Provincial Health Ministers and Drug Program Managers,

Due to COVID-19, Cystic Fibrosis Canada recently called upon government and Vertex to provide people with cystic fibrosis access to precision medicines known as CFTR modulators for humanitarian reasons.

Since that time, we are pleased to learn that Vertex has made an offer to the pan-Canadian Pharmaceutical Alliance (pCPA).  I urge you to start negotiations on that offer now.

Cystic fibrosis is a fatal disease. Similar to COVID-19 it affects primarily the respiratory system. Similar to COVID-19, it kills people. Unlike COVID-19 it’s much more efficient, just slower. Eighty five percent of people with CF will die from respiratory failure, but CF will ultimately kill them all, as compared to only about 1-2% for COVID. But instead of dying in weeks, CF slowly deprives everyone with CF of quality of life. Our 4,300 patients spent a total 26,500 days in hospital in 2018. That’s 72 years! Seventy-two years’ worth of hospital resources that could be better spent taking care of people with COVID-19.

 As you already know, there’s a way to dramatically reduce that number and improve the health of people with CF: to give them access to the precision medicines they need, medicines that raise lung function in people with CF in ways that were unheard of, and that still amaze the CF specialists that run our clinics. They are shining examples of what precision medicine can do, and they help keep people with CF out of the hospital.

It is your job to ensure that the people in your provinces can live healthy and well and to manage your healthcare resources as responsible stewards. Why are people with cystic fibrosis treated with such little regard when it comes to their health and well-being? It is time for our provincial ministers of Health to right this wrong and prioritize this offer now. People’s lives are depending on it.

We will check in with your office every two weeks until you come to a deal with Vertex. Our community is waiting and some of them are dying for access.

Sincerely,

Kelly Grover

President & CEO

Cystic Fibrosis Canada


 

The team at Cystic Fibrosis Canada encourages you to write your own provincial health minister now. Tell your provincial health ministers to negotiate the drug company, Vertex Pharmaceuticals, before it’s too late! #CFcantwait


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