Letter from a teenager living with cystic fibrosis

We received a message from Jérémi Martin, 14, who is living with cystic fibrosis. The message he wants to transmit is the same as that carried by Living with cystic fibrosis: changes are needed to improve access to certain medications in Quebec. To find out our proposals on this vital issue, you can go to the page we are publishing in connection with the elections on 1 October next year.

“Good morning!

My name is Jérémi Martin. I am 14 years old and I have cystic fibrosis (an incurable and fatal degenerative disease). Despite the disease I love life and everything it gives me; everything it would give me if I could have access to a medication that would prevent the disease from destroying my body.

I have always fought, I have never skipped treatment or medication. Despite my best efforts, the disease continues to wreak havoc in silence. My liver is slowly blocking, my adrenal glands are still not working well, I am back to my 6^E operation for the sinuses. For the past six years, I have had to do treatments to fight pseudomonas, a very resistant bacterium that is found in my lungs. I continue to hope that one day I will be able to live like young people my age.

There is a glimmer of hope, since there is a drug approved by Health Canada, Orkambi, that is designed for people living with cystic fibrosis and who, like me, have the homozygous DeltaF508 mutation. Unfortunately I can't access it. The RAMQ refuses to offer it to me, as to hundreds of other people with CF, while others are entitled to it. It is unfair!

I want to live. I want to have the right to at least try this medication. Why should my life not have the same value as that of others?

Let's fight together for the right to this medicine.”

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