Mr Speaker, Sir, having a child born with a rare disease can be a life-changing event for the entire family. In addition to the suffering that the child goes through, it also creates a lot of emotional distress, uncertainties and anxieties for the parents and can impose greater financial demand and physical demand in the caring for the needs of the child. The high cost of treatment adds to the overall burden. As a doctor, I have walked this journey with many patients and their family before, especially when they have an expected diagnosis being revealed to them.
2. I would like to thank Ms Cheryl Chan for her passionate speech and proposals relating to the Rare Disease Fund (RDF) in support of these families. The Government shares her concern for individuals with rare diseases where medication is very costly and required for life. This was why in 2019, the Government provided a generous matching of $3 for every $1 of public donation to establish the RDF as a charity fund to support Singapore Citizens diagnosed with rare genetic diseases.
3. The RDF supports high cost, life-saving treatments for very rare genetic conditions where the medications
(1) have a proven therapeutic efficacy,
(2) are able to substantially extend a patient’s lifespan and maintain quality of life as a direct consequence of its use, and
(3) be reasonably priced as when compared to its price in other countries.
4. Rare diseases with onset in childhood are prioritised initially as patients with these conditions can often go on to lead full and meaningful lives if they are diagnosed early in the course of their disease and receive the required treatment promptly.
5. Because these treatments tend to be lifelong, the RDF is structured as an endowment fund to ensure that only the interest income generated is used to fund the treatment and the capital sum continues to generate a sustainable stream of income to ensure patients enrolled into the program will have assured support.
Improving coverage of the RDF
6. While welcoming the setup of the RDF, Ms Chan has highlighted that the number of patients, conditions and medicines covered by the RDF is low, potentially leaving some rare disease patients unassisted.
7. Let me first clarify 3 common misconceptions.
8. First, this is not a situation in which eligible patients are not applying for the RDF due to a lack of awareness. In fact, as the costs are high, patients with rare diseases generally seek care in the public sector. We can therefore easily identify patients with rare diseases covered by the RDF and invite those who require financial assistance to apply.
9. Furthermore, many of the public sector specialists who treat genetic disorders are on the expert panel that advises the RDF Committee on the rare disease medicines that should be considered for coverage by the RDF.
10. Some patients with rare diseases have insurance coverage or alternative financial means and need not apply for RDF grants.
11. For those in financial need, medical social workers in the public healthcare institution and the patient’s specialist will assist the patient to apply for RDF assistance.
12. Second, when we first set up the RDF, it was established that there were up to 2,000 patients with rare diseases in Singapore.
13. However, majority of these patients have conditions where:
a. no treatments are available to correct for the genetic deficiency and life expectancy may be limited with poor quality of life, or
b. where treatments were relatively low cost and hence can already be supported under current funding sources.
14. We had therefore anticipated there could be up to 15 medicines that needed RDF support based on experiences of equivalent rare disease funds from overseas. In two years, we have covered six medicines. We need to do more, but it is tangible progress in the short time of two years. I would like to thank the RDF Committee for what has been achieved, and for the work that is to come to bring support to more patients.
15. Third, Ms Chan has also proposed to list more rare diseases and medicines on the RDF. We should only do so if the rare diseases have effective treatments that can meaningfully extend life expectancy. But adding more medicines does not in itself enable more patients to be helped, especially if the RDF does not have sufficient funds to support more patients for the entire lifetime of their treatment costs.
16. In the last financial year, the RDF made grant payouts of around $1 million. Many of the beneficiaries are children. They will grow and increase in body weight, which means that the medication dosage required along with the cost of treatment will go up commensurately. For example, in this financial year, RDF is projecting to make grant payouts of around $1.5 million which is 50% more than the last financial year for the same group of patients.
17. In the coming years, the annual sum in grant payouts required would increase significantly just to support these same patients. We have to cater for these increases with age when we decide how many patients the RDF can sustain, in order that the supported patients can be assured that they can continue to afford their medications once they are started on treatment.
18. This is a large sum for a very small number of patients. But that is how much rare disease medicines costs, and why we need all of us – the government and the community – to work together to help this group. Without more donations, it will be very difficult for the RDF to list more medicines or to support new patients.
More Donations are Critical for More Patients to be Helped
19. This therefore brings me to the crux of what will allow RDF to help more patients with rare diseases – raising more donations. Ms Chan has also recognised this in her speech.
20. It is not easy raising funds for patients with rare diseases. It was in recognition of this difficulty that the Government decided to match donations 3-to-1, so that every donation dollar is stretched further, and also to help encourage donors to come forward. In addition, all donations to the RDF are also eligible for a generous level of tax deduction at 250%, and the government also funds all administrative costs of the RDF so that donors are assured that every cent of their donation goes to the patients. This also applies to all donations made by corporations and family offices.
21. Fully aware of the importance of raising more funds, the RDF Committee together with its secretariat at KKH 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, as suggested by Ms Chan. It also stands ready to collaborate with organisations to help raise funds for the RDF, as it has done on a few occasions in the past. It is also exploring how it can develop a base of supporters who can reach out to their network to fundraise.
22. The RDF Committee will appreciate all the help it can get. If members of this house would like to help raise funds for the RDF, please let me know and I will gladly put you in touch with the RDF Committee.
Identifying More Rare Diseases for Coverage
23. Let me now turn to a few other proposals made in Ms Chan’s speech.
24. First, Ms Chan proposed to include two specific rare diseases – Neuroblastoma and Krabbe Disease.
25. Neuroblastoma is a form of cancer. Treatments for cancer, including Neuroblastoma are not covered under RDF as mainstream financing is available through MediShield Life currently. Those who need further assistance can apply for MediFund.
26. As for Krabbe disease, there are unfortunately no treatments available to slow disease progression today, with most patients succumbing by age 2. The current available medicines are for palliative and supportive care only, which would not fulfil the inclusion criteria for RDF of being able to substantially extend a patient’s lifespan. Patients who require additional assistance for palliative care are already supported via mainstream financing schemes such as subsidies and 3M (MediSave, MediShield Life and MediFund).
27. I would like to assure Ms Chan that the RDF Committee is well advised by the Rare Disease Expert Group on rare disease drugs that should be prioritised for coverage. Currently, the RDF Committee has a pipeline of 5 other medicines for 3 more rare diseases that stand ready to be added to the RDF list, once sufficient funds are raised.
Tapping More on Insurance
28. Ms Chan also suggested going beyond the RDF and leveraging more on insurance. I note that Ms Chan is familiar with the practice among private insurers of not covering pre-existing illnesses.
29. Where coverage of pre-existing illnesses is provided, it comes with loading of the insurance premium, which can be significant. The benefits and premiums of private insurance products, such as Integrated Shield Plans (IPs), are determined by insurers based on their own commercial and actuarial considerations.
30. In doing so, insurers have to strike a balance between providing more comprehensive coverage and ensuring the affordability of premiums as well as the sustainability of their insurance fund. As private insurance is optional, the insurers also need to guard against adverse selection that can affect sustainability.
31. Ms Chan may, however, be pleased to know that some insurance products such as IPs do not set exclusions for rare diseases, unless these are pre-existing conditions. In addition, our universal national medical insurance, MediShield Life, covers all Singaporeans from birth, with no disease exclusions and includes all rare diseases, subject to the relevant claims limit. Where there are claim limits to payouts such that there remains an out-of-pocket payment for the patient, the RDF would consider an application to support this remaining out-of-pocket payment.
32. In conclusion, establishing the RDF was a first step in assisting patients with rare diseases. The task remains ahead of us as a community to muster all the necessary resources and assistance that we all agree is needed for this group of fellow Singaporeans.
33. I would like to thank Ms Chan for calling on both the community and the Government, and even the pharmaceutical companies, to provide stronger support towards patients with rare diseases. I would like to reiterate the Government’s commitment towards supporting these patients with rare diseases. I encourage everyone to donate generously to this cause, so that more can benefit from the RDF.