B.C. babies to get world's most expensive drug after families raise millions
Lucy and Aryan are seen in photos posted on GoFundMe.com
VANCOUVER -- The families of two B.C. babies who need a drug often described as the most expensive in the world have raised enough money online for the pricey treatment, according to posts on a fundraising website.
The children who live in Vancouver and Surrey both have spinal muscular atrophy (SMA). Loved ones shared the babies' stories online, seeking financial help from those willing to donate.
As of Tuesday afternoon, an account set up for Lucy Van Doormaal's medical costs had reached $2,471,550. Another, for young Aryan Deol, raised $2,811,970.
Baby Lucy's family wrote on the fundraising site GoFundMe.com that they were grateful for the support they've received.
In capital letters, they posted the update: "LUCY IS GETTING ZOLGENSMA!"
They said the girl is a good candidate for the "groundbreaking gene therapy treatment," which they say could save Lucy's life.
The treatment is not currently covered by health-care plans in Canada, and costs about $3 million for a dose, they said.
Lucy hasn't been given a date for her treatment, but the family wrote they expect it in September.
"Although this process has been extremely stressful and vulnerable for us, the support of this community has been uplifting and we're thankful for all of your efforts," the family wrote.
The family said previously if Lucy's disorder was left untreated, she may not live to the age of two.
B.C.'s health ministry covers only one treatment for SMA, called Spinraza. Both Spinraza and Zolgensma are expensive, but children who take the latter drug earlier in their lives often have better outcomes, meaning it may be cheaper in the long run.
Spinraza costs about $750,000 for the first treatment, and subsequent doses are $350,000.
The family of another baby in Metro Vancouver also sought help earlier this year to cover the cost of Zolgensma.
Aryan, who just celebrated his first birthday, also has SMA. He started Spinraza in February, and was scheduled for another treatment last week.
On Aug. 8, the Surrey family posted that it had reached its fundraising goal, and that they couldn't wait to see what the future holds for the baby.
"From the bottom of our hearts, we want to thank everyone who has supported Aryan in his fight," they wrote on GoFundMe.
"Without all of you, nothing was possible. We're speechless, a simple thank you is not enough."