Quebec will refuse to pay to relieve his son

News 17 December, 2017
  • Photo Vincent Larin
    Amy Loignon in the presence of his son Émile, 5 year old, suffering from a serious degenerative disease that forces him to breathe in any time with a machine.

    Vincent Larin

    Sunday, December 17, 2017 01:00

    Sunday, December 17, 2017 01:00

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    The mother of a boy suffering from a rare degenerative disease has received as a punch to the news that the government will not pay to replace the $ 350,000 per year than the cost of the only drug that can relieve the pain.

    “It is completely inhuman, these are lives that are at stake,” says Amy Loignon, a resident of Saint-Jean-sur-Richelieu.

    Sitting in his living room on a seat, his son, Emile Demers, watch tv, connected to a device that helps him breathe. The boy of 5 years, loses little by little its motor abilities due to spinal muscular atrophy, a severe and rare degenerative disease. He cannot expect to live more than 30 years.

    His situation is deteriorating non-stop. Already, Emile can no longer walk or swallow or sit up straight. During a recent visit to the doctor, the mother learned that her young son would have to undergo a tracheotomy to help him breathe.

    “It means that Emile may not be more never talk about it “, whispered she, ” the throat.

    MmeLoignon hoped there still are a few days that the Quebec government agrees to reimburse the nusinersen, the only drug that could help treat the disease, Emile, and to which the little boy has never had access. The nusinersen has the effect of halting the degradation of the health status of patients with spinal muscular atrophy, according to several studies.

    354 000 $ per year

    However, the national Institute of excellence in health and social services has released its decision on Friday. In a report, INESSS asserts that reimbursement of the drug by the RAMQ does not constitute ” a decision is responsible, fair and equitable “. However, the Institute admits that there is no treatment currently to relieve the people suffering from this disease.

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    The costs of treatment with the nusinersen amounted to 708 000 $ for the first year, then to 354 000 $ per year for life. An amount that cannot be reimbursed by private insurance Amy Loignon since the medication must be administered at the hospital, ” she says.

    Under the shock

    The mother was in shock. “Emile was only 5 years old and has already had to undergo twenty major operations. It has already cost very expensive in support of the quebec health system. Why not repay the only medication that would reduce her treatments ? ” asks she.

    One of these operations has served to lay the metal rods in the back of the young boy to help his posture and prevent so that it crushes his lungs.

    “This is the first and only drug approved by Health Canada for the treatment of individuals with spinal muscular atrophy at any age,” says the interviewed at Montreal children’s Hospital, Maryam Oskoui, who has conducted clinical studies for Biogen, the company that produces the nursinersen.


    The company wants to negotiate with Barrette

    The only hope for Amy Loignon is now the minister of Health, Gaétan Barrette, reverses the recommendation not to repay the only drug that can prevent his son to suffer more.

    The company that produces the nusinersen states that she is willing to sit down with the government to revise downward its price.

    The director-general of Biogen Canada, Marina Vasiliou, said to have been disappointed of the conclusions of the national Institute for excellence in health and social services with regard to the effects of the drug of his company on the milder cases of spinal muscular atrophy such as that of Emile, who is type 2.

    Surprise and disappointed

    Last year, Health Canada has yet recognized the virtues of this treatment for these types of the disease, she said. Other countries have also spoken out in favor of the drug, including the United States and Italy, ” she says.

    Biogen Canada is currently offering the treatment free of charge to people affected by the forms of spinal muscular atrophy, the most severe type 1. But several parents of children with worry about the following things if the government refuses to of good to pay off the drug.

    “This is a global program and we’re going to keep it until there is a solution “, reassures the Marina Vasiliou.

    The press attaché to the minister Barrette has not responded to our calls and texts yesterday in the evening.


    What is spinal muscular atrophy ?

    • Genetic disease that attacks the muscular system.
    • Several types of the disease exist, ranging from very serious to minor.
    • Children of type 1, the most serious, have a life expectancy of less than two years.
    • Seven of nine children with spinal muscular atrophy are born each year, and three to five are infected with the type 1.
    • One person in 40 is a carrier of this disease that only develops in rare cases.