A medicine out prices that could save lives

Photo Pierre-Paul Poulin
Chelsea Gagnon, cystic fibrosis, wants the drug Orkambi, we can see it in his hands, to be recognized and reimbursed by the government of Quebec. The private insurance of his mother allow him to take it.

Antoine Lacroix

Sunday, 11 February, 2018 01:00

UPDATE
Sunday, 11 February, 2018 01:00

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People with a particular strain of cystic fibrosis would like the government to recognize the effectiveness of a drug off of prices that may improve their quality of life, in order that it should be repaid.

The recognition of the Institut national d’excellence en santé et en services sociaux (INESSS) would be that the drug, named Orkambi, be repaid by the ministry of Health.

If sick people want to pay for it themselves, they face a major issue : it costs approximately $ 250,000 per year, which makes it practically inaccessible.

“It is as if we wait for their permission before you can live normally. It is as if one said to me : “no, you don’t have the right to health”. But for me, it represents the hope of a better life “, says Alexis Rheault, 25 years old, suffering from the disease.

Chelsea Gagnon is part of the “lucky ones” who can have the drug, thanks to the assurances of his mother.

“To know that I could lose it at any time, this is what makes me the most afraid. I’m so much better since I take Orkambi, this is amazing “, exclaims the young woman of 28 years.

Photo courtesy

Alexis Rheault, who has cystic fibrosis

“I took 25 pounds “

This last has found an improvement on practically all aspects of his life, even if it must continue to ingest multiple drugs and continue his physical exercises in order to ensure the health.

“Before, I had no energy to do anything, I didn’t want to eat. I stayed in bed constantly. I had the air sick. I am taking the medicine from July 2017 and I’ve taken 25 pounds. I am active as ever, ” says Chelsea Gagnon.

Action harmless made him realize that she had actually taken the better : she was able to blow up a balloon.

The green ball

“Before, it would have been unthinkable,” said the young woman, adding that she has kept the green ball as a symbol of a better life. This medicine is hope. It allows me to imagine myself living a longer life, to tell me that I might be able to avoid needing a transplant of lungs. “

For his part, Alexis Rheault dream of the day when he received the call telling him he will be able to consume the Orkambi.

“All my life, I have participated in fund-raising so that we can fund the creation of a drug like that, and it’s inaccessible,” he says, disappointed.

“We dream all of a stability, not to wither. I don’t want to find myself in a critical state and finally being able to take it. Time is of the essence, ” concludes Alexis Rheault.