Bar denies them the only medicine for the relief of their children
Photo Agence QMI, Simon Clark
Sunday, December 17, 2017 23:16
Monday, 18 December, 2017 00:06
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Parents are furious to learn that the minister of Health will follow the recommendation not to repay the only medication that can relieve their children with a degenerative disease rare.
“They prefer to put metal rods in the back rather than pay for my medication “, was released Ofélie, 8 years old, on the verge of tears after hearing the minister.
The Newspaper reported yesterday that the Institute for excellence in health and social services (INESSS) has just recommend not to pay for the nusinersen. This is according to several studies the only drug that will reduce and reverse the degeneration of children with spinal muscular atrophy, a rare disease that attacks the muscular system, at a cost of $ 350,000 per year.
Fifteen of the parents who founded hope that the minister reverses the decision went to his meeting yesterday on the sidelines of a charity event that was held in a community centre in Brossard.
But Gaétan Barrette has said he would not do anything. The drug is ineffective according to INESSS, he recalled.
“I would like that we can give all medications, even experimental, but it is in a company who must make choices and these choices are made on an as rational as possible,” he said before meeting the parents in a room where journalists were not admitted.
A few moments later, a grief-stricken mother went to lock himself in the bathroom where you could hear screaming his rage.
More able to swallow
“We were told to wait until there’s more studies, but my 2 year old son, he will not be able to sit in 6 months, and within a year, he will have a scoliosis if it does not receive treatment,” said Valérie Beaulieu at its exit from the meeting.
“My daughter began to ask us to help him move his head so that she could swallow his saliva so that she was able to do it-even recently,” was described by another mother, Isabelle Boudreault.
The minister has also called into question the motivations of the company that produces the nusinersen, Biogen, to renegotiate to lower the price of its medicine.
“Of course, they can come to see us, but […] you have a company that sells the drug is extremely expensive and there, suddenly, she would be ready to lower the price. We can see that in the equation of interest which, on its face, are beyond the benefit of the patient “, explained the minister of Health.