A Plea for Singapore to Approve SMA Treatments
Imagine there’s a Singaporean girl with SMA. She’s exhausted by chronic neuropathy, medication, and feeling like she’s worth less than her able-bodied peers. So exhausted, in fact, she struggles with writing about her disability for SMA Awareness Month.
“Google is free. Why should I have to make myself uncomfortable and share my experience to educate others, especially when there are activists who are more eloquent and have more followers than me?” she thinks, glaring at her social media.
Thus, she writes a poem about her exhaustion and posts it on Twitter. She shows it to her American best friend, who also has SMA. To her relief, her best friend understands the frustration of being caught between the importance of creating representation and the stress of inviting strangers into your life. Her best friend even writes a column about this frustration, titled “The Truth About SMA Awareness Month.”
The following year, the Singaporean girl is hired as a columnist for SMA News Today. SMA Awareness Month is in August. Singapore’s National Day occurs the same month, on Aug. 9. The girl is published the first week of every month, meaning she’s expected to write something for SMA Awareness Month.
If you haven’t guessed yet, that girl is me.
This is what I believe is called irony.
I’ll confess, for a second, I was tempted to lament my position in this column entry. I’m still exhausted. I still believe the onus shouldn’t be on marginalized folks to educate in the age of the internet. But a year brings wisdom. Not only would it be downright ungrateful of me to complain, I’d be ignoring the platform I’ve been given to speak for people like me, as Brianna, my best friend, used her voice for me last year.
There may come a time when SMA patients won’t need to spend year after year informing people about our disease. There may come a time when we are unequivocally valued as members of society, no less than our peers. Yet, first we must do the work.
And if we tire? We can draw on the strength of those before us and around us.
At the end of her column for SMA Awareness Month last year, Brianna asked readers to “commit to turning awareness to advocacy, and advocacy to partnership.” She highlighted marriage inequality, the subminimum wage, and police brutality in the U.S. as starting points for readers.
This year, I wanted to give my own starting points for SMA advocacy in Singapore. It’s fitting, as both SMA and the Lion City are celebrated in August. I had selected a variety of subtopics to show that care for SMA patients should be approached holistically, from mental health to housing. But as I wrote this column, I realized I’d first have to address and focus on the unavailability of two disease-modifying therapies for SMA in my country: Spinraza (nusinersen) and Evrysdi (risdiplam).
At the time of writing, Spinraza and Evrysdi have yet to be fully approved by Singapore’s Ministry of Health and funded by its Rare Disease Fund.
Spinraza was approved by the U.S. Food and Drug Administration in December 2016, my birthday month; Evrysdi followed on Aug. 7, 2020 — two days before Singapore’s National Day.
In Singapore, Spinraza is currently available only for SMA type 1 infants through a compassionate care program. Evrysdi isn’t available at all. While it’s fantastic that infants who need treatment urgently can receive it here, it’s been devastating to watch my friends abroad who have SMA types 2 and 3 receive both treatments while my friends and I in Singapore are left behind.
SMA is a degenerative disease. It’s a race against time. In the past five months since my neuropathy worsened, I’ve been unable to tolerate sitting the entire day, which has led to a quicker decline of my ability to hold my body upright. Evrysdi, the ideal treatment for me, may have been able to mitigate the decline, if I was able to acquire a prescription.
I understand that these treatments are new and costly, and that we’re recovering economically from the COVID-19 pandemic. Per patient, Spinraza costs more than SG$ 1 million ($750,000) for the first year, and Evrysdi costs up to SG$460,000 ($340,000) a year. There are five-room flats that cost less.
But to look at the cost like price tags on a person’s life — apart from being dehumanizing — is missing the point. Consider: What would you give to keep a loved one alive and strong if they had SMA?
For some, the answer is everything, including their pride and country.
As I’ve previously mentioned, SMA affects every part of a person’s life and relationships. You never know if it might affect yours.
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.