Rare Disease Fund to Provide Financial Support to Singaporeans with Rare Diseases

1.   The Ministry of Health (MOH) and the SingHealth Fund have jointly established the Rare Disease Fund (RDF), a charity fund that combines community donations and government matching contribution to support Singapore Citizens with specific rare diseases who require treatment with high-cost medicines. 

Rare Diseases 

2.   Rare diseases are conditions that affect a very small number of people1. Often diagnosed during childhood, most rare diseases are genetic in origin. Many rare diseases do not have available treatments and patients often have shorter lifespans as a result. 

3.     For some rare diseases where effective treatments are available, the medicines can substantially increase patients’ life expectancies and improve their quality of life. However, these medicines can be very costly (up to hundreds of thousands of dollars a year) and patients will often need to take the medicines for their entire lifetime. 

4.    The RDF aims to encourage community donations towards supporting Singapore Citizens with rare diseases who are treated in our public healthcare institutions. This will give support to patients whose treatment costs remain unaffordable even after government subsidies, insurance and financial assistance (such as Medication Assistance Fund, MediFund) have been provided, due to the high-cost nature of the treatments. 

Government to Provide 3-to-1 Matching 

5.   Through the RDF, the community and the government can come together to jointly help patients with rare diseases, as partners in a caring and inclusive society.

 

  1. The community can support patients with rare diseases by making monetary donations to the Fund. The RDF will have Institution of Public Character (IPC) status, which means that all donations to the RDF will be eligible for a 250% tax deduction.
  2. The government is committed to matching donations made to the RDF to encourage the broader community to give generously to alleviate the financial hardship of patients with rare diseases. For every $1 in public donation, the government will provide $3 in matching contributions to the RDF.
  3. In addition, the government will fund all operational expenses of managing the RDF. This ensures that all donations received will be used solely for supporting patients.

 

6.    Mr Edwin Tong, Senior Minister of State, Ministry of Health, said, “The Rare Disease Fund will extend much needed help to fellow citizens with rare diseases and improve their access to life-saving medicines. By providing 3-to-1 donation matching, we hope that the larger community including philanthropists, companies, community groups and individuals will come together to jointly support these patients and their families as part of our caring and inclusive society.”

7.    The RDF generally adopts an endowment approach where the interest income generated is used to support patients, as a more sustainable means to support beneficiaries over their lifetime.

8.    About $18 million have been raised to date. Together with 3-to-1 government matching of public donations, the RDF currently stands at $70 million. The Founding donors and partners supporting the RDF are listed in Annex A.

RDF Committee

9.    A RDF Committee, comprising volunteers with diverse expertise, experiences and perspectives, will assess patient applications for financial support from the RDF, and provide stewardship over the governance of the Fund. The Committee will also decide on the list of medicines to be covered under the RDF, taking into account advice by an expert panel of senior clinical specialists with experience in rare disease management. Please refer to Annex B for the list of RDF committee members.

Commencement of Applications for Three Rare Diseases

10.   The RDF Committee has approved an initial list of five life-saving medicines which treat three rare diseases for funding under the RDF. These are:

Condition

Medicine(s)

Primary bile acid synthesis disorder

Cholic acid

Gaucher disease (Type 1 or 3)

Imiglucerase (Cerezyme)

Velaglucerase alfa (VPRIV)

Taliglucerase alfa (Elelyso)

Hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency

Sapropterin dihydrochloride (Kuvan)

 
11.      Applications for financial assistance from the RDF have commenced for patients with these three conditions. Singaporeans undergoing treatment at public healthcare institutions for these rare diseases who require additional financial assistance may apply through the medical social workers at their public healthcare institution. Each application will be considered by the RDF Committee on a case-by-case basis. To date, the RDF Committee has evaluated and approved applications from two patients.

12.      As more funds are raised, the RDF can be expanded to cover more medicines for other rare conditions. Please refer to Annex C for the criteria which are used by the RDF Committee to determine the eligibility of medicines for inclusion in the RDF. 

13.     We encourage the public to support patients with rare diseases by donating generously to the RDF.Mrs Laura Hwang, chairperson of the RDF Committee said, “We hope that the wider community will come together to support patients with rare diseases by donating generously to the RDF. As more funds are raised, we hope to expand coverage of the Fund to support more patients.”

14.   Donations may be made through www.giving.sg/rare-disease-fund
More information on the RDF is available on www.kkh.com.sg/rarediseasefund

[1] Defined as fewer than one in 2,000 people.

MINISTRY OF HEALTH 
2 July 2019

 

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