'Tori and her family deserve better'

Espanola woman seeks help to fund cousin's life-altering treatments

GoFundMe Teri Lacey (right), a mother of three, business owner and hairstylist who originally hails from Sudbury, has started a GoFundMe page aimed at raising $750,000 – the amount her cousin, fourth-year Ryerson University student Tori, needs for a year of Spinraza treatments.

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An Espanola woman hopes online donations can help her cousin afford the expensive, but life-altering treatments for spinal muscular atrophy, while their family continues the fight to make the drug accessible for all sufferers of the rare neuromuscular condition.

Teri Lacey, a mother of three, business owner and hairstylist who originally hails from Sudbury, has started a GoFundMe page aimed at raising $750,000 – the amount her cousin, fourth-year Ryerson University student Tori, needs for a year of Spinraza treatments.

Spinal muscular atrophy, or SMA, is a progressive disease with similar symptoms to ALS, or Lou Gehrig’s disease – it causes Tori’s muscles to become weaker over time. Diagnosed at the age of one, Tori now requires a powered wheelchair to get around and can use only two fingers on her right hand – just enough to operate the chair and type on her iPad.

“The reality is that she could eventually lose the ability to eat, speak, swallow, and even breathe without ventilator support,” Teri wrote. “It is a scary disease that Tori has been faced with, and as her cousin, it breaks my heart knowing that Tori’s future is so unknown.”

Spinraza, also known as nusinersen, can stop the progression of SMA and, in many cases, even restore motor function. Health Canada approved the drug in June 2017. Treatments are costly, however – $750,000 in the first year, and $375,000 every year thereafter – and funding is limited. Tori’s family and others have advocated for the Ontario government to add Spinraza to the provincial formulary for funded drugs, but funding is currently available only for SMA sufferers considered to by Type 1s, or those with the more severe form of the disease. Despite the severity of Tori’s symptoms and the impact on her life, she is considered a Type 2 patient. The Canadian Agency for Drugs and Technology in Health recently recommended the province extend funding for Spinraza for those with Type 2 SMA, but only for those up to age 12.

“The reason (the Canadian Agency for Drugs and Technology in Health) recommended that Ontario fund Spinraza only for those under the age of 12 is because it is not ‘cost-effective’ to fund it for anyone older,” Teri wrote. “This is pure ageism, but it is the hard-hitting reality of having a socialized medicine system. The government solely looks at cost per person receiving the treatment, rather than quality of life or the fact that the population of people with SMA in Ontario is so small, that the overall cost to the province would be so incremental.”

She said the system also fails to acknowledge that more than 45 other countries are funding Spinraza for all ages and all types of SMA, due to its effectiveness, and that the province of Quebec is funding Spinraza for all ages and all types of SMA.

“It’s unbelievable to think that some Canadians’ lives are being valued, while others are being completely disregarded on the basis of cost. This is not the world-renowned healthcare system I imagined we had.”

Tori’s family continues to fight for access to treatment, Teri said, but her cousin is “losing strength each and every day.”

“Just in the past six months, Tori lost the ability to type on her laptop (which is incredibly important to her as a university student), and she has been experiencing increased fatigue in her arms and neck. I recently found out that she will not be graduating with her peers this year, because her disease has made it impossible to keep up with a full course load like she did in previous years. The rapid progression of Tori’s disease means that she has no more time to waste; she needs and deserves treatment now.”

Meanwhile, the family is exploring the possibility of relocating to Quebec so Tori can receive treatment. That could take six to eight months to set up, Teri said, even if her cousin dropped out of school and moved there immediately.

“Tori already has an incredible neurologist in Toronto that is willing to set up the first injection as soon as next month, she just needs funds to secure the first dose. I found out today that my uncle and aunt have re-mortgaged their house and listed their investment property for sale in order to start funding this treatment, but that is no situation a parent should ever have to put themselves in, especially in a country like Canada. Tori and her family deserve better.”

In addition to GoFundMe donations, Teri encouraged supporters to write Christine Elliott, Ontario’s minister of Health and Long-Term Care, to ask that the government fund Spinraza for all SMA patients.

“Tori has her whole life ahead of her. She is a brilliant young lady that has the biggest dreams for her future and truly never stops reaching for the stars, but without treatment, she may never be able to accomplish her goals.”

bleeson@postmedia.com

Twitter: @ben_leeson

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How to help

For more information and updates or to donate, visit www.gofundme.com/toris-fight-for-spinraza.

 

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