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UPDATE: Edmonton Family Pleading for AHS Compassion Funding to Save Toddler’s Life with Multi-Million Dollar Drug

Imagine your special needs child had a fighting chance at life but the drug you needed was out of reach, worth 2.8 million dollars?
kaysen
Kaysen Martin needs a life-saving drug that costs millions. His parents are lobbying AHS for the one-time medication. Photo: Lana Bernardin

Even with a petition, gofundme page and high-profile help for the cause, time is running out for little Kaysen Martin. The Edmonton toddler was diagnosed with Spinal Muscular Atrophy Type 1 (SMA 1), a motor neuron disease affecting the voluntary muscles used for lung support, swallowing, crawling, walking and head control.

The drug Zolgensma is the first gene therapy that could provide a one-time forever treatment for Spinal Muscular Atrophy. Zolgensma is coming to Canada; however the drug must be administered before the age of 2. The price tag of the drug is 2.8 million dollars and Kaysen turns 2 on July 17th. 

Kaysen’s parents, Lana Bernardin and Mark Martin, have spent the last 2 years fighting for Kaysen to receive the only other available drug currently available in Canada, called Spinraza. The first two years of treatment with Spinraza cost around 50% of one Zolgensma infusion, but Spinraza treatments must continue for life at a cost of $375,000 each year.

The four initial loading doses of Spinraza in the first year of treatment total $750,000. A one-time dose of Zolgensma would save Alberta Health Services thousands of dollars and a life time of support for Kaysen if approved now.

“We are exhausted and scared,” said Lana Bernardin, Kaysen’s mother. “But we have to keep fighting. We’ve started a petition, we are working tirelessly with the Canadian Organization for Rare Disorders to lobby Alberta Health Services to help us. We have yet to hear if they’ll provide this therapy for Kaysen and we only have a week till he will no longer qualify for this treatment.”

“Every Canadian baby should have the very best chance for life," said Durhane Wong-Rieger, with the Canadian Organization for Rare Disorders.  "Time is running out for Kaysen and yet the cost effectiveness of Zolgensma is clear. In terms of quality of life, one infusion of Zolgensma would save Kaysen sedation and multiple spinal infusions of Spinraza each year. We are calling on the Alberta Minister of Health, Tyler Shandro, to provide this gift to Kaysen and to Health Canada to approve this drug for Kaysen and his family.”

The drug company and makers of Zolgensma, Norvartis, have applied to Health Canada for approval of the drug. However, Health Canada has already approved a Special Access Program, so Kaysen can get the drug prior to approval if funding becomes available through Alberta Health Services.

Zolgensma was given FDA approval in the United States in May of 2019 and is currently the most expensive drug in the world. In patient testing, babies with the most severe form of the disease who got the treatment within 6 months of birth had limited muscle issues. It is best administered early in life.

Canadian actor Ryan Reynolds chipped in $5,000 after hearing of Kaysen's plight, and is one of hundreds who've helped pitch in more than $500,000 so far for the needed medication.

"Never in a million years did I think someone like Ryan Reynolds would notice my son and his campaign," Bernardin said. "I really have no words. The outpouring of support from so many people is so amazing."

Approximately 1 in 6000 babies are born with SMA. The petition to help Kaysen Martin is at change.org.

UPDATE:  As of July 20, $1 Million has been raised for Kaysen:
To view the GoFundMe, visit: https://ca.gf.me/v/c/gfm/kaysens-quest




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