More ill children can get help with more donations to Rare Disease Fund, says Koh Poh Koon

There are more than 2,000 Singaporeans with rare diseases, of whom 700 are children. PHOTO: UNSPLASH

SINGAPORE - More donations will enable the Rare Disease Fund (RDF) to widen access to treatment and costly medication for children suffering from rare diseases, said Senior Minister of State for Health Koh Poh Koon on Monday (Aug 2).

The Government, he added, will continue to match every dollar donated with $3, and that would help ensure more people who need treatment get help paying for it.

The projected amount to be given out this year for those who need treatment is $1.5 million. This is 50 per cent more than the last financial year for the same number of patients.

Responding in Parliament to a call by Ms Cheryl Chan (East Coast GRC) for more diseases and drugs to allowed under the RDF, Dr Koh said the fund supports high-cost, life-saving treatments for rare genetic conditions where the medications have a proven therapeutic efficacy and can substantially extend a patient's life.

That, in turn, can help maintain the patient's quality of life. It also has to be reasonably priced, he said.

The RDF, which was set up two years ago in July 2019, is structured as an endowment fund to ensure the interest generated is used to fund the treatment, and ensure patients in the programme will continue to be supported in the future, he said.

Ms Chan, in her adjournment motion, said the fund has assisted seven beneficiaries as at April.

She added that there are more than 2,000 Singaporeans with rare diseases, of whom 700 are children. Treatment and medication expenses can cost tens of thousands of dollars a month, and can add up to more than half a million a year, she said.

In response, Dr Koh said a majority of these patients have conditions involving a genetic deficiency that cannot be treated, and life expectancy may be limited with poor quality of life. Sometimes, their conditions have corresponding treatments that are relatively low cost, and covered by existing schemes.

Ms Chan said firms can still provide medical insurance - with more manageable and sustainable insurance premiums - and consider providing coverage under a higher co-payment condition for those with rare diseases.

"Could the RDF be explored to partially offset the cost for the insurance premium, in order to assist them?" she asked.

Dr Koh said private insurers have to strike a balance between providing more comprehensive coverage, ensuring affordability of premiums as well as sustainability of the insurance fund.

But he added that some insurance products, like Integrated Shield Plans, do not have exclusions for rare diseases unless there are pre-existing conditions, and that MediShield Life covers all Singaporeans from birth, with no disease exclusions.

Dr Koh supported Ms Chan's calls for more donations, saying that is the crux of what will allow the fund to help more patients with rare diseases.

However, attracting donations is no easy task, he added.

Dr Koh said: "The RDF committee, together with its secretariat at KK Women's and Children's Hospital, are doubling up their efforts to raise funds.

"It has, and will continue to approach high net worth individuals, foundations as well as corporate sponsors."

MPs who are keen to help raise funds for the RDF, he said, should approach him for more information.

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