Rare disease: supplements reimbursed by the Quebec health insurance plan

Supplements essential to the health of people with tyrosinemia, now reimbursed by the Quebec health insurance plan, will be able to help families in Saguenay-Lac-St-jean.

The minister responsible for the Saguenay-Lac-St-Jean region, Andrée Laforest, made the announcement Monday morning at the Chicoutimi hospital.

Taking amino acid supplements represents costs varying between $120 and $250 per month for families.

People with this rare hereditary disease that attacks the liver must follow a very strict diet that excludes all protein.

“We are lucky to have insurance that reimburses part of the amount,” explained Myriam Chrétien, a Saguenéenne whose seven-year-old girl has tyrosinemia.

Families who do not have insurance had to do without it until very recently, even if these supplements are essential to the development of the child.

“Children who have an amino acid deficiency have an increased risk of having problems with motor development, language, learning and ADHD”, explained a pediatrician, Dr. Cloé Rochefort-Beaudoin.

The efforts made by the families to convince Quebec to pay the costs associated with taking these supplements have been rewarded after years of efforts.

“It will also make children with a metabolic disease equal,” said the president of the Groupe d’aide aux enfants tyrosinemique du Québec, Gérard Tremblay.

The measure in effect since January 9 will also reduce supply times thanks to the Quebec Food Program for the treatment of hereditary metabolic diseases.

In Quebec, 120 people are affected by this rare hereditary disease that attacks the liver.

Of this number, 30 are children who live in Saguenay-Lac-St-Jean.

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