As an Adult With SMA, I Need Access to Evrysdi, Too

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by Sherry Toh |

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Let’s start this story about Evrysdi (risdiplam) from the beginning.

About a year ago, the chronic neuropathy in my scalp that had been bothering me for three years worsened to a point of concern. It started as a mild and slightly nauseating throbbing from the back of my skull that I ignored and kept from my mum.

My caregiver and I tried to resolve it by changing my posture and the location where I sat. We had hoped to somehow alleviate the pressure on my nerves that kyphoscoliosis was causing.

Unfortunately, by last December, the nerves on the left side of my face had gone partially numb. Yet, any gentle attempt to massage feeling back into my face felt like someone was punching me. Neuropathy makes nerves go haywire like that.

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My caregiver and I gave up trying to treat me, and we eventually told my mum. I recall her scheduling my home-care team to arrive on Dec. 11, 2020. I remember the date because it was the day Taylor Swift’s album “Evermore” was released, and the previous day, the video game Cyberpunk 2077 had launched. Both of these things later helped me cope with pain and my emotions.

The appointment with my home-care team didn’t change anything, but it wasn’t entirely pointless, either. My doctor concluded that my spine’s curvature had obviously pinched a nerve, but I didn’t need to worry yet about having a stroke, unless my neck muscles could no longer support my head. It was a relief to hear that my greatest medical fear had been assuaged, at least for the moment.

When we began discussing changes to my pain medication and whether we could do anything else to help me, I finally had an opportunity to ask about Evrysdi, an oral disease-modifying therapy (DMT) that could curb the decline of my strength. In hindsight, I should’ve taken my doctor’s unfamiliarity with Evrysdi as a bad sign.

Here in Singapore, SMA patients aren’t expected to live into adulthood, so matters involving the disease are considered pediatric issues and are typically handed off to staff at the children’s hospital, even if we’ve already transitioned to medical teams for adult patients. So, I had to wait for both my general and pediatric teams to convene, which took months.

My home-care nurse apologized several times about this, but it was fine by me. I understood that acquiring Evrysdi was complicated — it was new, expensive, and hadn’t yet been approved by Singapore’s Ministry of Health.

A doctor on the pediatric team finally called my mum last February with the bad news: “It’s too expensive. The government hasn’t provided the funding. I’m sorry,” she said.

She went on to explain that Spinraza (nusinersen), an injectable DMT, was available, but only for SMA type 1 infants under a compassionate care program, as Spinraza wasn’t formally approved yet, either.

I spent that afternoon crying. As an adult with SMA, I felt like I wasn’t worthy of anyone’s compassion. My disease had progressed too far for me to be saved, unlike an infant who still could become nondisabled.

Nevertheless, I refused to give up. My medical team couldn’t help me in my quest for Evrysdi treatment, but the Muscular Dystrophy Association of Singapore (MDAS) was willing to help me look for solutions. Then, when MDAS couldn’t find answers, despite their best efforts, I asked my friend and fellow SMA News Today columnist Brianna Albers for advice. Brianna also has written about her difficulties acquiring Evrysdi.

In a column for SMA Awareness Month last August, I pleaded for Evrysdi’s approval, naively believing someone in a position to help might read it and take action.

Meanwhile, my chronic neuropathy spread throughout my body. My strength declined. I now have to shove a towel between my neck and shoulder to support my head. I am continually weakening and losing time, and the one treatment that could change the course of my disease is out of reach.

The situation is infuriating and devastating, especially when local news reports that another child has been provided special access to SMA treatment. Don’t get me wrong, I’m genuinely thrilled for the children who receive these therapies. But it also feels like I’m screaming into a void. No one here seems to care that this lack of treatment is life or death for us, too.

But I only have so much energy to give. There are only so many avenues I can explore, and I can only write the same column so many times.

It’s now December 2021, and a year has passed since I first asked my medical team about Evrysdi. Nothing’s changed since then, but I keep hoping it will — and soon.

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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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