Rare Disease Fund

NOTICE PAPER NO. 2399
NOTICE OF QUESTION FOR ORAL ANSWER
FOR THE SITTING OF PARLIAMENT ON 22 NOVEMBER 2023

Name and Constituency of Member of Parliament
Mr Ong Hua Han
Nominated MP

Question No. 5435

To ask the Minister for Health in view of the Health Sciences Authority’s assessment of risdiplam which cited data showing improvements in motor function following 12 months of risdiplam treatment as compared with placebo or historical data, whether the Rare Diseases Fund can include medications, such as risdiplam, to treat spinal muscular atrophy.

NOTICE PAPER NO. 2394
NOTICE OF QUESTION FOR WRITTEN ANSWER
FOR THE SITTING OF PARLIAMENT ON 22 NOVEMBER 2023

Name and Constituency of Member of Parliament
Mr Ong Hua Han
Nominated MP

Question No. 5206

To ask the Minister for Health (a) how many applications has the Rare Diseases Fund (RDF) received since November 2022; (b) how many RDF applications in this period sought funding for non-listed medications; (c) how many RDF applications in this period have been successful; and (d) whether annual reports on the RDF highlighting the number of applications received and the financial status of the fund can be published.

NOTICE PAPER NO. 2400
NOTICE OF QUESTION FOR WRITTEN ANSWER
FOR THE SITTING OF PARLIAMENT ON 22 NOVEMBER 2023

Name and Constituency of Member of Parliament
Mr Ong Hua Han
Nominated MP

Question No. 5225

To ask the Minister for Health (a) how are donors to the Rare Diseases Fund (RDF) being informed that they have the option of specifying that the principal sum of their donations can be drawn down for Cell, Tissue, and Gene Therapy Products (CTGTPs); and (b) whether these donors can be informed on what constitutes the expendable component of the RDF as stated in the RDF donation form.

Answer

1      Mr Speaker, my answer will also address written PQs 24 and 25 in today’s Order Paper. 

2   The Rare Disease Fund (RDF) is a charity fund for which Government matches donations 3-to-1, and is managed by the RDF Committee (RDFC) comprising community representatives under the advice of a panel of medical experts.  

3    The RDFC oversees the RDF’s fund-raising efforts and donor engagement.  The expansion of RDF to cover Cell, Tissue, and Gene Therapy Products (CTGTPs), and ability to draw on the principal donation to spend on CTGTPs are fairly recent arrangements, and the RDFC will communicate with new donors.  On Mr Ong’s suggestion to publish an annual report, MOH will relay this to the RDFC for their consideration. 

4      Currently, the RDF has listed seven treatments for five conditions. This is based on the the clinical effectiveness of these treatments and if RDF is adequate to support all known patients requiring the same treatment. Since November 2022, the RDF has received and supported applications from eight patients. 

5      We hope that donors will consider supporting the RDF so that more treatments and conditions can be listed, and more patients can be supported. 

6      Separate from the RDF, MOH will review the clinical and cost-effectiveness of spinal muscular atrophy treatments for subsidies and mainstream financing. In the interim, subsidised patients who face concerns affording these treatments may approach Medical Social Workers to apply for MediFund.