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B.C. $ 1-million-per-year drug cover for Victoria girl, 3, with rare, fatal disease


A Victoria family says the province has agreed to cover a life-saving, million-dollar drug for their young daughter.

The parents of Charleigh Pollock, 3, gave the province access to Brineura, a promising new medication that has received federal approval but is not covered by BS public health system.

Their daughter suffers from CLN2 or battens disease, a rare and fatal genetic disorder that results in multiple seizures every day.

She is the only person in British Columbia who has the condition and one of 13 children in Canada with the condition, the family says. Most children who have died at the age of six and twelve.

The case was before the province's independent drug review committee, which agreed to fund the treatment for Charleigh.

"We are in shock we are excited, we have no nervous we have every emotion going right now," said Jorye Falls, Charleigh's mother, in an online video posted Friday.

In this case, a growing class of drugs highlights the B.c. The Ministry of Health has been described as "expensive drugs for soldier diseases."

In October 2018, the province covered the cost of 16 rare drugs for rare diseases, with list prices ranging from $ 100,000 to $ 3,000,000.

The ministry was explained to say on Charleigh's case, citing patient's privacy.

& # 39; the first step & # 39;

Charleigh's family learned of her diagnosis three weeks ago and launched a GoFundME page to raise funds for the expensive treatment, also known as enzyme replacement therapy.

CLN2 patients lack an enzyme that causes brain damage. Brineura, allowing every two weeks through a tube into the brain, helps replace that missing enzyme.

Charleigh's parents, Trevor and Jory, shared the update with an online video. (Facebook)

The treatment is new and costs more than $ 1 million a year. But clinical trials have shown promising results, the family says.

It will slow Charleigh's rapid deterioration until a cure is found, they say.

The girl suffered an unexplained defense, the first sign of the disease, eight months ago.

As the disease disappears, a child will go blind and lose the ability to walk and talk. They eventually develop dementia and lose all cognitive functions.

So far, Charleigh, who has been a few weeks from her fourth birthday, is still going to say a few words. She is nourished with a feeding tube.

She will have to endure infusions and brain surgery for months ahead, said Trevor Pollock, Charleigh's father, in the video.

"This is the first step in a long journey ahead of our family."

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