Sudbury, Ont. family finally gets coverage for drug to treat daughter's rare epilepsy

It's been an agonizing wait for the family of a young Sudbury, Ont. girl with a rare form of epilepsy called Dravet Syndrome, but the promise of access to a new drug is giving them hope.

About 18 months ago, the Guitard-Lapointe family applied for a new drug to treat their three-year-old daughter's illness. This week, the family received word that the cost of the drug would be covered.

Researchers say the severity and number of seizures people with Dravet mean one in five won't reach adulthood.

Fenfluramine, also known as Fintepla, is a former appetite suppressant that was discontinued due to cardiovascular side effects but was brought back in 2020 and approved by the Federal Drug Administration in the U.S. for treating Dravet Syndrome.

But it is not approved by Health Canada.

It costs about $3,000 a month and is prohibitive for the Guitard-Lapointe family.

Cindy Guitard is Alina's mother.

Sudbury family wins coverage for drug for daughter's rare form or epilepsy after 18 months

8 months ago

Duration 1:10

Cindy Guitard talks about the wait to get coverage for a non-Health Canada approved drug under a special program to treat her daughter, Alina's, rare form of epilepsy called Dravet Syndrome.

She says they applied through Health Canada's Special Access Program for the drug, and coverage to pay for it, but were told they should try all other recommended medications before they could access fenfluramine.

The approval for coverage for the drug came just this week much to the family's relief.

However, Guitard feels the wait has harmed Alina, who has experienced developmental delays and is non-verbal due to the severity and number of her seizures.

"We kept getting denied," she said. "We had three appeals. We kept trying, kept fighting.

It was just not going to happen unless Alina trialed all the available treatments first."

Family advised to try all other options first

One of the treatments that Guitard feels has helped her daughter is a physician-prescribed ketogenic diet.

The special high-fat, ultra low-carbohydrate diet helps to control seizures and Guitard said in Alina's case has allowed them to open the curtains to allow light into the home.

People with Dravet Syndrome are sensitive to light which can trigger seizures.

But Guitard is angry with the system for making them wait for a drug regime that she heard was helping other families.

"I think that's also what really hurt the most," she said. "I was so happy to see these children being so great, and it was sad that Alina couldn't be like that too. And why wasn't she given the opportunity to have the best treatment? Not the less effective ones first, but the best."

Guitard said the fight may be over to access fenfluramine, but the fight against Dravet Syndrome continues every day.

She remains steadfast in her belief that cost shouldn't be an obstacle to providing effective medications to children.

Before Alina can start on the new drug, the family has to meet with their doctor and Alina has to undergo some tests.But Guitard hopes she'll be starting the new medication very soon.