We fought for access to Evrysdi, and now we’re fighting to keep it

“Did you tell your siblings my medication costs about $1,000 SGD [$783] per day, before subsidies?” I texted my dad a couple of months back. It had been years since his elder brother and sister had seen me. As fate would have it, I was due for phenol and steroid injections to treat chronic pain at the same hospital where my grandmother was hospitalized for surgery. My aunt and uncle were surprised to see me looking so strong.

“Yes, I’ve told them before,” my dad replied, with a nervous-looking emoji.

Evrysdi (risdiplam) — the daily oral disease-modifying treatment for SMA — has led to an observable difference in me. Though my motor scores haven’t improved much on paper in the two years since I started the treatment, the small changes I’ve noticed are significant for my quality of life. I can speak more loudly and clearly, hold my head up again, and I’m not as easily fatigued. When my dad sees me, he tends to comment, “You used to look sick, but you don’t anymore. You’re better and prettier now.”

Disclaimer: Evrysdi does not claim to modify prettiness. My dad was just being my dad.

Recommended Reading

July 29, 2026 Columns by Sherry Toh

A lack of accessibility nearly caused me to miss my date with ‘Dracula’

I realized that for people like my aunt and uncle, who hadn’t seen me in years, I’m no longer the Sherry they expected. I’ve gained weight because it’s easier now for me to chew and swallow. I have a more active and productive lifestyle. Evrysdi may have a large price tag, but what it’s done for me is invaluable. My fight for it to be financially accessible through public funding was more than worth it, although I shouldn’t have had to do that.

Now, I and other SMA patients must fight for it to remain financially accessible.

Crazy expensive survival

Zhu Jiahui is a data intelligence analyst who works at Marina Bay Sands, the iconic Singaporean hotel featured in the film “Crazy Rich Asians” — the one with a boat-shaped roof and a stunning horizon pool. Like me, Jiahui has SMA type 2, and we’ve known each other since we were kids attending events hosted by the Muscular Dystrophy Association (Singapore), or MDAS.

Jiahui and I recently met again at an MDAS event. This time, the association had partnered with Roche, the pharmaceutical company that markets Evrysdi globally, to share insights from neurologists and patients about the impact of the treatment here in Singapore, and to answer questions from the community. I was delighted to see that Jiahui had been asked to be a speaker on the panel.

The topic of the treatment’s cost inevitably came up during the discussion. Several people wondered whether treatment with Evrysdi would be financially sustainable. Jiahui raised an important point when she acknowledged that “I’ve thought about whether I should quit my job to remain on Evrysdi.”

Her statement might seem shocking, but it makes sense when you realize that subsidization of the drug here in Singapore is based on per capita monthly household income. According to the Medication Assistance Fund (MAF) Subsidy Framework, Jiahui is eligible for only 50% of her treatment cost to be subsidized. “Even with the subsidies,” she says, “I still have to pay about $600 SGD [$470] for the medication, which doesn’t include outpatient consultation fees and other medical expenses.”

This is a problem for her, because she hopes to climb the career ladder and have a financially secure future. So should she keep working at the risk of earning “too much” to qualify for the subsidies that help pay for her lifesaving medication? Or should she earn less than she needs so she can stay on public aid?

To me, a couple better questions are: Why must rare disease patients face this conundrum at all? Why should we only be able to live but not thrive alongside our nondisabled peers?

Many people, including me, can’t afford healthcare without help. I’m entirely reliant on Singapore’s MediFund program, which covers all of my medical expenses, including Evrysdi. Without that assistance, my family would face significant debt. The phenol and steroid shots I receive cost over $5,000 SGD ($3,900) each time I get them, which is every few months. The alternative is having debilitating pain 24/7. Without them, I couldn’t do things that are important to me, such as visiting my grandmother.

And Jiahui rightly pointed out in a text to me that, as we grow older, our healthcare, medical equipment, and caregiving costs will only increase. While our nondisabled peers buy homes, we’d be blessed to own BiPAP machines and Evrysdi bottles.

As I see the issue, the threshold to qualify for public funding needs to be raised or evaluated case by case, or medical costs need to be lowered. We SMA patients shouldn’t have to fight this hard to secure our futures.

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.