Editor’s Note: This column is about suicide. Please find help resources at the end of the column.
I wish the call was an April Fool’s joke.
As readers of my column will know, I have been very vocal about the need for SMA patients here in Singapore to access Disease Modifying Therapies (DMT). The first daily oral treatment targeting the cause of SMA, Evrysdi (risdiplam), is of particular interest to me as its non-invasive administration would suit me best.
By early January, however, I had grown anxious for news of Evrysdi’s approval status. I decided to ask the agency of the Ministry of Health that regulates treatments about this. A few days later, I was directed to the government registry of approved health products and treatments.
Miraculously, when I checked the registry, I saw: Evrysdi’s status was labeled as “active” – meaning it has been approved for sale and use here.
I immediately texted the nurse who put me in touch with my medical team. Together, we entered into formal discussions to get me a prescription. My nurse continued to follow the government health system for almost four months, but we received no news – until April 1.
That day, a neurologist from the National Institute of Neuroscience, a center specializing in neuroscience-related health care, called me to ask if he could help me. I thought that was good news, and it looked like we were finally making progress toward getting a DMT that could stabilize my symptoms.
This is important, because over the past year I quickly lost the strength I needed to hold my neck straight. I just can’t bear to lose any more of that strength.
The neurologist explained to me that my request for a prescription had turned into an appeal for government funding. This didn’t entirely surprise me, as a prescription of Evrysdi costs around SG$460,000 ($338,000) per year. Then she said, “You can come in for an assessment, but as you’re on a BiPAP machine at night, the call is unlikely to go through.”
I thought she would follow 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 came back to the main issue: the claim that my use of a BiPAP machine in my sleep is proof that my SMA has progressed “too far. “so that Evrysdi would take advantage of it, despite evidence to the contrary. Because of this opinion, I would be considered practically a waste of public funds.
But this government funding would not be for some mindless commercial enterprise, it would be spent on life-saving treatment for a citizen who pledges every year on Singapore’s National Day to build a society of ‘justice and equality’.
A few hours after that call from the neurologist, I texted two of my best friends, Hannah and Brie. I would characterize our relationship as an unlikely partnership in one instance, and a brotherhood of two people bound by SMA in the other.
Overwhelmed with anger and devastation, I texted Hannah first. I knew she would be waking up soon and I needed someone to comfort me in real time before I could plan my next steps. I told him that I wanted to set fire to everything in sight. She joked that she would cheer me on if I did, which made me laugh. Somehow, I felt I would end up ok with this outcome.
When I was calm enough to talk about the appeal process, I messaged Brie, who herself was having trouble getting Evrysdi in the US due to her BiPAP use. We went back to his fight against an insurance company and discussed the ethical arguments that we could make in my case.
“I really can’t understand their logic,” Brie said. “You would think people with worsening symptoms would be higher on the list?”
“I didn’t even think about it,” I replied. “It’s like that [COVID-19] vaccination protocols were, and that’s how it is for all other treatable diseases. The most vulnerable are the first, right? »
I had forgotten the reports I had read of people with disabilities being denied care during the COVID-19 pandemic, just as I might be denied treatment with Evrysdi. I recognize the parallels here, because it’s just another reminder of the systemic ableism that devalues the lives of people with disabilities.
Facing the darkest times
It would probably be easier to accept the denial of my request and acknowledge my surrender. That April Fool’s night, I cried when my caregiver placed my BiPAP machine on me and turned off the lights. With no one to talk to at the time, and no other distractions, my thoughts wandered to dark and painful places.
A quickly devised plan to delete my social media accounts and complete my own demise was equally painful. I thought this would save others the most pain and the burden of financial resources, because this is how people with disabilities must feel when our requests for care are denied.
But I decided that giving up would also mean giving up the people who think I’m worth infinitely more than SG$460,000 – Hannah, Brie and other friends, my family, BioNews colleagues, strangers I’ve met with a disability study group that now helps me with my calling, my readers and many others. They all remind me that it is unfair and unethical to see dollar signs where there is a living, breathing human being.
So I will fight and continue to appeal my cause. I have scheduled a request and appeal assessment, and in the meantime, I am sending my medical team evidence of SMA patients on BiPAP machines in other countries who have received funding for the Evrysdi treatment. I will write to the local authorities asking for help. I will do whatever it takes.
If you or someone you know is having suicidal thoughts or needs to talk to someone, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.
To note: SMA news today is strictly a disease news and information site. It does not provide medical advice, diagnosticWhere processing. This content is not intended to be a substitute for professional medical advice, diagnosticWhere processing. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 on issues relating to spinal muscular atrophy.