A mother whose daughter suffers from an extremely rare genetic anomaly cries out for the government to allow a pharmaceutical company to finance her treatment and for the parents to obtain an allowance for disabled children.
The problems of little Yanis, 10 years old, are caused by the duplication of the NSD1 gene inside one of the 5 chromosomes. Barely 31 cases are listed on the planet.
The girl has severe learning disabilities. She suffers from motor dyspraxia, also called developmental coordination disorder (DCD), which in turn leads to several other health problems.
These disorders have major consequences on the life of the young girl, explains her mother, Ève D’Amours.
In particular, she has growth retardation for which the treatment was paid for by a pharmaceutical company following a request for funding made by an endocrinologist.
But since April 15, 2021, Quebec has banned financial support from drug manufacturers for patients who buy insured drugs.
Mme D’Amours must therefore pay a little more than $700 per month for the treatment.
His insurance reimburses only a portion of the amount following a “three-month battle” with the RAMQ.
heartbreaking choice
To make ends meet, the mother had to make a heartbreaking choice. She was forced to cut her daughter’s occupational therapy sessions for lack of money.
“We paid for four occupational therapy sessions a month at $600. I had to completely cut. And there, we resumed, but these are two sessions per month. In an ideal world, she should do it every day,” she says. “And that’s not counting the other medical expenses. »
Mme D’Amours finds it unfair that Quebec is the only province where this treatment is not reimbursed.
“Anywhere in Canada, the treatment would be provided to him free of charge,” she laments, specifying in passing that she understands “the basis of this law”.
Subsidies
At the same time, Ève D’Amour would like to see a review of the forms and eligibility criteria for requests for a supplement for handicapped children.
Many parents with children struggling with CDD like her daughter face refusal from the government and are not entitled to help, says Ms.me D’Amours, who succeeded in obtaining this grant, not without effort.
“It helps, among other things, to pay for occupational therapy, which is not accessible to the public. To me and to many other families. »
Another mother, who started a petition, hopes to be heard this time. Stéphanie Harvey, whose boy has “still severe” CDD, had been refused by the government after presenting a first petition.
“This time, we are asking that all the criteria be revised. There is an issue of fairness, ”she pleads.
“This money will not pay for everything [pour les parents]but it will definitely help,” says Ms.me Harvey.