I Won’t Quit My Fight for Access to Evrysdi in Singapore

Sherry Toh avatar

by Sherry Toh |

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Editor’s note: This column discusses suicide. Please find resources for help at the end of the column.

I wish the call had been an April Fools’ prank.

As readers of my column will know, I’ve been very vocal about the need for SMA patients here in Singapore to access disease-modifying therapies (DMTs). The first daily oral treatment to target the cause of SMA, Evrysdi (risdiplam), is especially of interest to me because its noninvasive administration would best suit me.

By early January, though, I had grown impatient waiting for news of Evrysdi’s approval status. I decided to ask the agency at the Ministry of Health that regulates treatments about it. A few days after that, I was directed to the government registry for approved health products and treatments.

Miraculously, when I checked the registry, I saw it: Evrysdi’s status was labeled as “active” — meaning it was approved for sale and use here.

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I immediately sent a text to the nurse who connects me with my medical team. Together, we began formal discussions about getting me a prescription. My nurse continued to follow up with the government’s healthcare system for nearly four months, but we received no news — until April 1.

That day, a neurologist from the National Neuroscience Institute, a specialist center for neuroscience-related healthcare, called to ask if they could assist me. I thought that was good news, and it seemed we were finally making progress with obtaining a DMT that could stabilize my symptoms.

This is important, because last year, I rapidly lost the strength I need to hold my neck upright. I simply can’t bear to lose any more of that strength.

The neurologist explained that my application for a prescription had turned into an appeal for government funding. I wasn’t entirely surprised by this, as an Evrysdi prescription costs about SG$460,000 ($338,000) a year. Then she said: “You can come in for an assessment, but because you’re on a BiPAP machine at night, it’s unlikely the appeal will go through.”

I thought she’d follow that up with, “April Fools!” But she didn’t.

Measuring lives in dollars and cents

We went back and forth for a while, but inevitably, we kept circling back to the main issue: the claim that my use of a BiPAP machine while sleeping is evidence that my SMA has progressed “too far” for Evrysdi to benefit me, despite evidence to the contrary. Because of this opinion, I would be considered practically a waste of public funding.

But that government funding wouldn’t be earmarked for some foolish business venture, it would be spent on lifesaving treatment for a citizen who pledges every year on Singapore’s National Day to build a society of “justice and equality.”

Hours after that call from the neurologist, I messaged two of my best friends, Hannah and Brie. I would characterize our relationships as an unlikely partnership in one case, and a sisterhood of two people bonded by SMA in the other.

Overwhelmed by anger and devastation, I texted Hannah first. I knew she’d be awake soon, and I needed someone to comfort me in real time before I could plan my next steps. I told her I wanted to set fire to everything in sight. She joked that she’d cheer me on if I did, which made me laugh. Somehow I felt I’d eventually be OK with this outcome.

When I was calm enough to talk about the appeal process, I messaged Brie, who had her own struggle to obtain Evrysdi in the U.S. because of her BiPAP usage. We revisited her fight against an insurance company and discussed the ethical arguments we could make in my case.

“I genuinely can’t make sense of their logic,” Brie said. “You would think that people with worsening symptoms would be higher up on the list?”

“I didn’t even consider that,” I responded. “That’s how [COVID-19] vaccine protocols were, and it’s how it is for every other treatable illness. The most vulnerable are first, right?”

I’d forgotten about the reports I’d read of disabled folks being denied care during the COVID-19 pandemic, just as I might be denied treatment with Evrysdi. I recognize the parallels here, as it’s just another reminder of systemic ableism that devalues the lives of the disabled.

Facing the darkest moments

It’d probably be easier just to accept the denial of my application and acknowledge my surrender. On that night of April Fools, I cried as my caregiver placed my BiPAP machine on me and turned off the lights. With no one to talk to in that moment, and with no other distractions, my thoughts wandered to dark and painful places.

A quickly devised plan to delete my social media accounts and carry out my own demise were equally sorrowful. I reasoned that this would spare others the most pain and the burden to financial resources, because that’s how disabled folks are made to feel when our appeals for care are denied.

But I decided that giving up would mean also giving up on the people who think I’m worth infinitely more than SG$460,000 — Hannah, Brie, and other friends, my family, colleagues at BioNews, the strangers I’ve met in a disability studies group who are now helping with my appeal, my readers, and many others. They all remind me that it’s unjust and unethical to see dollar signs where there’s an actual living, breathing human being.

So I’ll fight on and continue to appeal my case. I’ve scheduled an assessment of the application and the appeal, and in the meantime, I’m sending my medical team evidence of SMA patients on BiPAP machines  in other countries who have received funding for Evrysdi treatment. I’ll write to local officials asking for help. I’ll do whatever it takes.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.


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.

Comments

LEE Young Yee avatar

LEE Young Yee

Hi, Sherry
I am not a native English speaker and I am a Chinese. So I wonder if you could help me grasp some sentences more precisely.
"The neurologist explained that my application for a prescription had turned into an appeal for government funding."
Do you mean that your prescription application was denied and then you need to appeal for the Rare Disease Fund's funding, or "your prescription application was approved, but you your fund wasn't approved, you need to appeal for it". Is the government funding from Rare Disease Fund or Singapore's health care system? There are so many differences between China and Singpore's health care system and few information about it. Does the word appeal mean ""
"that’s how disabled folks are made to feel when our appeals for care are denied." Is the "appeal" an legal term "An appeal is a formal request for a decision to be changed." or "a serious and urgent request.".
The main confusing point is located at the differences between an application and an appeal.
I am really moved by your fight for Evrysdi in Singapore. Keep on and stay fit. I hope everything goes well. Thank you again if you could help me with the information.

LEE Young Yee.

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