Louis Chua: I hope that a high income, developed nation such as SG can work towards supporting patients with rare diseases

SINGAPORE: Workers’ Party MP Louis Chua filed a question in Parliament last week about the incidence of rare diseases in Singapore, noting that there have been recent crowdfunding campaigns for young patients who are suffering from Spinal Muscular Atrophy (SMA), a rare neuromuscular condition that leads to progressive muscular weakness and affects patients’ ability to sit, crawl, stand, walk, swallow and even breathe on their own.

“We all wish for our loved ones to be healthy. But yet as rare as some diseases go, some would still be diagnosed with these diseases, with prohibitively expensive treatment options. I can only imagine the pain and helplessness of watching a loved one’s health deteriorate due to the inability to afford medical treatment… I do hope that a ‘high income’, developed nation such as ours can work towards supporting patients diagnosed with such diseases, and not have to rely on crowd-funding as the only viable financing model,” he wrote in a Facebook post on Tuesday evening (Mar 28).

The Sengkang GRC MP had asked the Minister for Health how many Singaporeans are currently diagnosed with rare diseases, and what percentage of these patients are covered by the Rare Disease Fund (RDF). Mr Chua also asked whether the RDF can move from covering medicines to treat conditions to cover rare diseases instead.

Mr Chua noted that while the exact number of Singaporeans newly diagnosed with rare diseases and their life expectancy is not tracked by the Ministry of Health (MOH) he was given the answer by Health Minister Ong Ye Kung that between 2,000 to 3,000 people are afflicted with chronic rare diseases in the country.

“Since its establishment in 2019, RDF has supported nine patients, which represents about 0.4 per cent of Singaporeans with rare disease,” he added.

He also wrote that at present, about 40 to 50 people in the country have been diagnosed with SMA, and its expensive treatment is prohibitive to many, as the drug Risdiplam costs $375,000 annually.

There is another treatment for SMA, one-time gene therapy Zolgensma, and at $3 million, it is considered to be the most expensive drug in the world.

Recently, a crowdfunding effort was launched for a 14-month-old boy named Shamel, who was diagnosed with SMA last November.

As of this writing, only 58 per cent of the funds needed for Shamel’s treatment, Zolgensma, has been raised.

People who wish to donate to Shamel’s treatment may click on this link, or see his IG account to learn more.

/TISG

Crowdfunding effort to raise $3million launched to help 14-month-old boy fight rare genetic condition