Rare disease: they deplore the fact that the drug their child is not refunded

News 22 December, 2017
  • Simon Gamache-Fortin

    Friday, 22 December 2017 16:17

    Friday, 22 December 2017 16:27

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    RIMOUSKI | the decision of The minister of Health not to reimburse only one drug for children with spinal muscular atrophy is yet to respond. Parents of small Emmanuelle de Rimouski present the progress made by their daughter in order to get things moving.

    The small Emmanuelle, 6 and a half years, is diagnosed with this rare degenerative disease that affects the muscular system.

    Since last year, she participated in a study to test the only drug that will reduce and reverse the degeneration. The decision of the minister of Health does not reimburse the remedy is non-sense, according to the parents of the little girl.

    “She has a better hold of the head, she is going to have a lot more endurance too, his respiratory capacity. The cases in the daily banalities. All of a sudden, I realize that Emmanuelle took a glass on the counter and came over to place it on the table. Before, she would never have been able to do that”, told her parents Joel Vignola and Geneviève Fournier.

    Emmanuelle is proud of some small gestures that she can now accomplish. “There is a room comp, and then I managed to get my dish on the small table”, said proudly Emmanuelle.

    The minister of Health decided to follow the recommendations of the report of the Institute of excellence in health care and social services. For the researcher who led the study and who sits on committees of experts on the international scene, there is no doubt about the benefits of the treatment.

    “I was very much surprised, the fact that they question the efficacy of a drug that has been very well studied and endorsed currently by Health Canada, which recognises the effectiveness of this population”, said Dr. Maryam Oskoui, associate director of the department of neurology for children, Montreal children’s Hospital.

    The parents of Emmanuelle have a message for the minister Gaétan Barrette just before Christmas.

    “We want precisely to show that our girl, it’s going well. And then that it is not true that the drug is not effective. It is a drug that is effective. All the scientists are saying it,” pointed out Joel Vignola.

    The mother of Emmanuelle added: “there was evidence to support, so I wonder if there is a lack of information on that side, because there was evidence to support”.

    Emmanuelle receives injections every four months in Montreal in the framework of the study.