SPEECH BY MR EDWIN TONG, SENIOR MINISTER OF STATE, MINISTRY OF LAW AND MINISTRY OF HEALTH, AT THE MOUNT ALVERNIA HOSPITAL’S “HOPE SHOULD NOT BE RARE” COMMUNITY CARNIVAL IN AID OF THE RARE DISEASE FUND, 3 NOVEMBER 2019

Mr Ho Tian Yee, Chairman, Mount Alvernia Hospital

Mr Philip Tan, Chairman, Community Chest

Dr James Lam, CEO, Mount Alvernia Hospital

Ladies and Gentlemen

1.     Good morning. I am so pleased to be here with you today. Today’s theme is “Hope Should Not Be Rare”. We agree absolutely as whatever the disease may be, whatever rarity the disease is, hope should always be there. It is an appropriate theme as we continue to strengthen support for patients with rare diseases and continue to raise public awareness of such diseases.

Rare Diseases2.       Rare diseases are conditions that affect a small number of people, and they typically stem from inborn genetic disorders. Most are diagnosed in childhood and most of these rare diseases are not curable. But there are a number of rare conditions for which effective medicines that can correct the genetic deficiencies to substantially extend lifespans and improve the quality of life are available.

3.      However, these medicines tend to be very expensive, costing up to a few hundred thousand dollars a year sometimes, and patients typically require these medications for life. Even after government subsidies, insurance coverage and existing programmes and financial assistance, patients and their families still continue to face great financial burden in trying to meet these costs of medication.

The Rare Disease Fund4.      In July, the Ministry of Health and the SingHealth Fund launched the Rare Disease Fund to provide assistance for patients with such rare diseases. The fund will extend much needed help to Singapore Citizens with rare diseases, and improve their access to life-saving medicines.

5.       The Government matches $3 for every $1 in public donation. All donations will also be eligible for a 250% tax deduction. In addition, the Government will also fund all the operational expenses, which means that every dollar that is collected by the Fund will go towards rare diseases medication fund entirely.

6.      When we launched the Rare Disease Fund, there were five medicines and three conditions that were covered. I am pleased to announce today that the RDF Committee has decided to include a sixth medicine which is for the treatment of Pompe Disease. The medication bill of patients with Pompe Disease could well be more than $500,000 per year, and this depends on the age and weight of the patient.

7.        The listing of Pompe onto the Rare Disease Fund is possible because we have so many generous benefactors who have stepped forward to donate selflessly, with a lot of compassion, to the RDF. We are very happy that the RDF has recently received significant support from Temasek and the Tsao Family Fund.

8.    We hope thatphilanthropists, companies, corporates, community groups and individuals will continue to come forward as a society and as a community to help support patients with rare diseases. It is not just the patients, it is their families as well who stress and agonise over financial costs and the threshold it takes to meet the costs of medication, very often for a young child in the family.As more funds are raised, the Rare Disease Fund can be expanded further to cover even more types of treatment and patients in the future.

9.        On this score, I would like to thank Mount Alvernia Hospital very warmly and from the bottom of my heart, for organising this meaningful event. Mount Alvernia Hospital is driven by a strong social mission, and has consistently utilised its surpluses to fund outreach programmes that serve and help the community in many different ways. The hospital’s community outreach medical and dental clinics, located at the Enabling Village at Redhill and Agape Village at Toa Payoh, have benefitted many families from disadvantaged backgrounds. Today’s carnival is yet another example of this. Thank you for spending your Sunday in such a meaningful way. I hope everyone here will participate actively in the programme today. Support the carnival booths where proceeds of sales will be channelled towards the Rare Disease Fund.

10.      Finally, I want to say that this event would also not have been possible without the very strong partnership of Community Chest and Punggol Coast Constituency. When we talk about education, we say it takes a whole village to raise a child. It is not very different in healthcare – it does take many hands and stakeholders to come together selflessly for a cause. Helping the marginalised and those who don’t fall in the mainstream signifies how far we have come as a society and how strong we are as a community in Singapore. I thank all of you very much for playing such a big role in doing that and long may this continue.

Thank you.