Why I’m crowdfunding for the SMA treatment Evrysdi

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by Sherry Toh |

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My hands are shaking as I look at my crowdfunding page and type. My mouth is dry and my heart is pounding. I feel like an overheated device running too many apps at once, except the apps are emotions.

Anxiety tops the list. For half a year, I’ve known the day would come that I’d be fundraising for a disease-modifying therapy (DMT) to hopefully halt my SMA progression. But it’s hitting me now how real it is that I’ve affixed a price tag to my life.

The process began last August. Not long after I had a mental breakdown over losing my ability to sit upright on my own, another patient, an infant named Zayn, who has SMA type 1, was on the nightly news here in Singapore. He was in a pediatric intensive care unit, and his parents had contacted the Singaporean crowdfunding nonprofit Ray of Hope to raise money for the lifesaving but expensive treatments Zolgensma (onasemnogene abeparvovec-xioi) and Evrysdi (risdiplam). While I’ve seen other SMA infants featured in online media, Zayn was the first I’d seen on TV. It was a stunning, pivotal moment that sparked a movement to save him.

Meanwhile, my mum was desperate to save her own daughter from spiraling and deteriorating further. We knew I was — and am — running out of time to do the things I love, to be the person I want to be, and to be an active member of society. Zayn’s story inspired us to contact Ray of Hope. Although they couldn’t help me fund Evrysdi indefinitely, which is required of the daily oral treatment, they could at least help me buy some time — a year, to be exact. That will cost 375,000 SGD ($280,000).

After six months of paperwork, meetings, and back-and-forth conversations between Ray of Hope’s case workers, neurologists, and other members of my healthcare team, my crowdfunding page has finally gone live.

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What it took to crowdfund for Evrysdi

I am immensely grateful to everyone who helped me get to this point. A couple of paragraphs in the limited space of a column can’t convey the scope of their actions and the depth of what they mean to me. If there’s one thing I’ve learned from this experience, it’s that while I may feel alone, there are people who care and will fight to make SMA therapies financially accessible for patients of all ages in Singapore.

Yet while I’m grateful, I can’t deny that I’m also upset and frustrated that we have to fight and fundraise for treatment in the first place. Lifesaving medicine shouldn’t cost five times more than the average annual salary of a nondisabled Singaporean. This is especially true when you consider that only 30% of disabled Singaporeans of working age are currently employed, and that Evrysdi was developed with the support of the nonprofit SMA Foundation.

Furthermore, my family had to set aside their dignity for me. In a conservative country like Singapore, disabilities and wealth are considered issues of personal responsibility rather than systemic issues the public has a collective stake in. Not having money for healthcare is often seen as a personal failure, and those who publicly ask for donations are subject to suspicion from others.

I honestly don’t care how strangers see me. If they’re suspicious or viciously ableist, I view it as their failing, not mine. But my family shouldn’t have to be anxious about what people will say to or about them when they just want me to live the best life I can. And although I don’t really care about the public’s perception of me, I’m fortunate that my family loves me so much that they care. They want me to be defined by my achievements, not by something that might be lacking.

Hope for future SMA patients

One of my most popular columns was titled “What the Ancient Greeks and Architecture May Tell Us About Accessibility.” It was an examination of how, like in ancient Greece, one glance at a building can tell us who’s welcomed into a space and who isn’t, based on how accessible it is. I’d contend that it’s a lesson we should apply to healthcare institutions as well. If rare disease patients like me are falling through the cracks, it’s arguable that our healthcare systems weren’t actually built for us.

The good news is that there are people working to make healthcare increasingly inclusive for those who come after us. It’s why if I don’t raise enough funds to be treated, I asked Ray of Hope to automatically put the money toward the next SMA patient who crowdfunds for DMTs.

The fight is tough, draining, and arguably unnecessary, but many believe SMA patients are worth it — because we are. To quote the Broadway production “Hamilton,” “This is not a moment, it’s the movement.”

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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