Support for treatment of rare illnesses, regardless of cost, must be carefully reviewed: Ong Ye Kung

The authorities will work towards expanding the scope of treatments that can be supported by the Rare Disease Fund, said Health Minister Ong Ye Kung. ST PHOTO: KUA CHEE SIONG

SINGAPORE – Whether the Government should support medical treatments for rare diseases, regardless of cost, must be “carefully reviewed”, said Health Minister Ong Ye Kung.

This is especially if the efficacy of such treatments is uncertain, he added in a written reply to a parliamentary question by Mr Leon Perera (Aljunied GRC) on Nov 8.

The Workers’ Party MP had asked a number of questions regarding the Rare Disease Fund (RDF) – which provides long-term financial support to those who need high-cost medication for rare conditions – including how many applications the fund has received since April 2021 and its ratio of applicants to grants.

Mr Perera also asked whether the fund has enough money to support new applicants.

In his response, Mr Ong noted that the RDF – which currently supports seven medications for five conditions, including primary bile acid synthesis disorder and Pompe disease – has received applications from six patients since April 2021, all of whom are currently supported by the fund.

“There are sufficient funds to support these patients,” he said, without stating a figure.

Then Senior Minister of State for Health Koh Poh Koon said in August 2021 that $1.5 million was expected to be given out through the fund that year, 50 per cent more than in the previous financial year for the same number of patients.

Mr Ong acknowledged on Tuesday that there are patients with rare diseases who require medications that are not currently supported by the RDF.

“Medicines for rare disease patients can exceed $200,000 per patient annually, with varying efficacies, and our healthcare financing system is not designed to support such high-cost treatments,” he said.

The fund acts as a form of collective support for Singaporeans, with the Government providing $3 for every dollar donated by the public, Mr Ong added.

It is also heartening that some have been able to obtain financial support from the community through crowdfunding or other charitable funds, he noted.

The authorities will continue to monitor the situation and work towards expanding the scope of treatments that can be supported by the fund, Mr Ong said.

“We also encourage members of the public to support the RDF with donations so that more medicines and conditions can be listed, and more patients can be supported,” he added.

An estimated 2,000 to 3,000 people here have rare diseases.

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