Two-month old needs $3 million life-saving drug

$3 million to save baby's life

A fundraiser aiming to save the life of a two-month old girl must raise $3 million.

Lucy Van Doormaal was born April 1 at the BC Children's Hospital. She suffers from Spinal Muscular Atrophy 1 (SMA1), a rare neuromuscular disorder, according to CTV News Vancouver.

If left untreated, she might not live past one year. However, when she was 10 weeks old an antibody test revealed she could receive a gene therapy. It is estimated that the therapy is the most expensive drug in the world, costing $3 million for a single dose. It is not covered under Canadian health care.

"It sounds pretty cruel that there could be something that could possibly save her life and we don't have access to it and can't imagine how we would be able to pay for that," says Lucy's mother Laura Van Doormaal.

According to the B.C. health ministry, one treatment of Spinraza for SMA is currently covered. But the treatment that the Van Doormaals are seeking is called Zolgensma, which was submitted on June 25 to the Common Drug Review. 

Spinraza costs approximately $750,000 for the first year of treatment and $350,000 after that, according to Dr. Durhane Wong-Rieger with the Canadian Organization for Rare Disorders.

"At this point we're not saying that the B.C. government is doing anything wrong. Typically governments do not fund for drugs that haven't been approved," she says.

"But we're asking them to do the right thing and be compassionate. At the end of the day it will pay off many times over for the government and also for the baby."

The B.C. health ministry said in an emailed statement: "We must allow this independent expert review to take place without interference. These reviews are thorough and do take some time.

"B.C. will continue to work proactively and collaboratively with all organizations, other governments and agencies within the national drug review process to ensure that British Columbians get better access to more affordable prescription drugs."

A GoFundMe campaign has been started for the Van Doormaals. It has raised more than $750,000 of the $3 million goal.

-With files from CTV News Vancouver

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