SINGAPORE — On Wednesday (12 Jul), TOC reported that Lucas, a 2-month-old baby diagnosed with Spinal Muscular Atrophy (SMA) Type 1, has left his parents with no choice but to appeal for crowdfunding from the public.
Lucas urgently needs the Zolgensma treatment, which comes with a staggering price tag of S$2.4 million to potentially save his life. Unfortunately, this life-saving treatment is not subsidised by the government, leaving Lucas’ parents in an overwhelming financial predicament.
They have described Zolgensma as ‘the world’s most expensive drug,’ a cost that is simply unaffordable for them.
As of Friday, the crowdfunding campaign for Lucas on the Ray of Hope platform raised 59% of the total cost, with S$977,666 more needed to reach the target and secure the treatment for baby Lucas.
While the crowdfunding for Lucas shows positive progress, there is another 24-year-old SMA Type 2 patient who is also seeking community help to raise S$375,000 for her treatment.
This treatment would allow her to maintain her quality of life and perform daily tasks.
Sherry Toh, a socio-political and gaming journalist and advocate for the SMA community, has experienced the devastating effects of SMA, a progressive muscle-wasting disease.
To recap, Spinal Muscular Atrophy (SMA) is a rare genetic disorder caused by an incomplete gene that results in insufficient survival motor neurons.
Without enough motor neurons, individuals with SMA become significantly weaker as they age, which is happening to Sherry Toh.
Ms Toh shared that just a year ago, she could hold her head and spine up on her own, but now she needs piles of pillows for support.
“Time will eventually lead to me requiring invasive procedures for respiratory support and feeding, and I’ll be bedridden at a certain point. ”
Medication with the astronomical cost
There is a daily orally-delivered medication called Risdiplam that can increase motor neuron production and stabilize the progression of SMA.
However, the astronomical cost of up to $375,000 a year poses a significant obstacle for Ms Toh and others with SMA who need access to this life-saving medication.
“It’s a price tag no SMA patient can afford. And yet, it’s a life-saving medication that is necessary for me to maintain my quality of life, allowing me to perform tasks from eating to doing my dream job as a journalist indefinitely. ”
A written reply from Singapore Health Minister Ong Ye Kung in March 2023 to a Parliamentary question filed by Louis Chua, Member of Parliament for Sengkang GRC, revealed that about 40 to 50 persons in Singapore are currently diagnosed with SMA.
The drug Risdiplam, sold under the brand name Evrysdi, is an oral medicine and the only treatment option registered with and approved by Health Science Authority (HSA), and It costs around S$375,000 a year in Singapore’s public healthcare institutions.
Advocate for lowering the price of Risdiplam
Ms Toh is hoping to raise awareness about adults with SMA and demonstrate that investing in their well-being is worthwhile through this fundraiser.
“I’d also like to advocate for a lower price for Risdiplam and other SMA treatments for all SMA patients,” Ms Toh expressed.
However, she recognizes the need to buy time for herself before hospitals in Singapore can prescribe Risdiplam at a more affordable cost for patients.
“My decline has been unexpectedly rapid in the past year and is still continuing. This is why I am fundraising for one a year’s worth of Risdiplam, ” Ms Toh explained.
She emphasized the importance of stabilisng her condition, as it would provide her with more time with her loved ones and help her avoid further medical complications and invasive procedures.
“It’d also let me continue contributing to society with insight from the lens of someone with a severe disability. ”
In contrast, Ms Toh’s career has progressed rapidly over the past two years. As a journalist, she writes socio-political features for Singapore’s Rice Media and has established herself in the field of gaming journalism, with bylines in publications in the UK and the US.
She has an advocacy column for SMA News Today, a health news site for SMA patients. And in December 2022, she started her own games review site, Finally Playing.
In 2023, her essay “Virtual Progress: A Disabled Journalist’s Thoughts on the Video Games Industry” was published in Singapore’s first printed disability studies anthology, “Not Without Us: Perspective on Disabilities and Inclusion in Singapore.”
To facilitate Ms Toh’s treatment, payments will be made directly to the hospital in two installments: $187,500, which constitutes 50% of the campaign target, and the remaining amount of the campaign, also $187,500.
However, since Ms Toh’s crowdfunding campaign started in March, it is still 97% away from reaching the goal of $375,000.
The pharmaceutical company gifted a 3-month supply of Risdiplam to Ms Toh despite a crowdfunding campaign setback
In an update on Wednesday (12 Jul), Ms Toh shared some good news despite the setback of her crowdfunding campaign.
The pharmaceutical company behind Risdiplam, Roche, has gifted her a 3-month supply after recognizing the slow progress of the campaign and consulting with her neurologist.
Ms Toh took her 1st dose on 27 May, and she has already noticed minor yet significant improvements in her swallowing and speech.
“To rule out that I’m experiencing the placebo effect and to ensure I’m progressing well, I will be seeing my neurologist in late July — after which I will provide an update when I’m able.”
Although the slow progress of the campaign is admittedly concerning, Ms Toh stated that even if she doesn’t raise at least 50% of the target amount, the funds will be allocated to the next SMA patient who fundraises with Ray of Hope for their treatment.
Nevertheless, Ms Toh expressed her sincere gratitude towards the donors who have contributed. From family, friends, colleagues, to strangers, she is deeply moved by their kindness and compassion. She also appreciates the awareness raised, even if individuals are unable to make a financial donation.
If you wish to contact Ms Toh for further details, you can also reach out to her via email: [email protected]