The family of a 5-year-old boy from Saint-Jean-sur-Richelieu hopes the government will reconsider its decision not to reimburse the costs of an expensive treatment that could slow the effects of a rare degenerative disease.
Émile Demers, who has already undergone 20 surgeries, suffers from Spinal Muscular Atrophy, which prevents his body from producing a special protein that is needed to keep the muscle cells alive.
"They call these diseases orphan diseases, because they are extremely rare," said CJAD 800's medical expert Dr. Mitch Shulman. "I think the numbers in Canada may be as few as 9 patients in a year.
Demers cannot walk under his own power, has trouble swallowing, and requires the aid of a breathing aparatus, but a new medication called Spinraza (chemical name: nusinersen), which assists the body in producing the protein, could help alleviate his suffering and slow the the disease's progression.
But, the National Institute of Excellence in Health and Social Services decided that RAMQ should not cover the costs of the treatment, which amount to more than $700,000 in the first year, and another $350,000 per year of life after that.
"This brings up one of those classic, no win debates that we have in society," Dr. Mitch said, who believes this puts Health Minister Gaétan Barrette in an impossible position. "You have a rare disease. You may have a treatment that perhaps can't cure the disease, but at least give a quality of life and prolong the survival of the person with it. But, it costs a whopping amount of money. You only have so much money to take care of all the diseases."
Biogen Canada, the company that manufactures the medicine, indicated to TVA that it is ready to sit down with Health Minister Gaétan Barrette, and expressed willingness to negotiate on the price. The family hopes they will be able to come to an agreement, and has filed a petition with the National Assembly.
More information and a link to the petition can be found on the family's facebook page, Émile et Elli.