Rare Disease Fund
Many families affected by rare diseases cannot afford the necessary treatments. Due to the small population of people these diseases affect, exorbitant price tags are often placed on the therapies. Some are hundreds of thousands of dollars each year and many patients require treatment for life. Few families can afford these costs. While insurance payouts, government subsidies, and financial assistance programs can aid in offsetting these costs, many families still struggle with the payments.
The Rare Disease Fund (RDF) was officially launched in collaboration with SingHealth Fund and the Ministry of Health (MOH) on July 2, 2019. This fund will help aid these families.
To start, this fund will focus on three rare diseases- Gaucher disease, Hyperphenylalaninaemia due to BH4 deficiency, and Primary bile acid synthesis disorder. Five different medications for these diseases will be eligible for coverage. However, the hope is that this fund will expand in the future in order to aid more patients suffering from other rare conditions.
Donations
Currently, the RDF has 70 million dollars with which they can provide support. This is thanks to the government’s commitment to matching community donations 3-to-1. Not only that, but Singapore’s government is also covering all operational expenses. This will help to ensure that all of the donations get to the patients they were meant to assist.
The hope, is that the government’s action will also inspire others to get involved. Community groups, philanthropists, and individual donors are asked to support the mission. Donations to the RDF are eligible for a 250% tax reduction.
The applications are already live for patients in need of support. So far, two beneficiary applications have been approved for support by the RDF.
Beneficiaries
- Geoffrey Toi Xian Jun’s son Christopher was diagnosed with primary bile acid synthesis disorder at just 6 months old. He will need cholic acid for the rest of his life. Currently, this treatment costs 6,250 dollars every single month. Thankfully, RDF will now cover part of this cost.
- Chew Tuck Choy’s daughter Zecia was diagnosed with Gaucher disease and will need lifetime enzyme replacement therapy. This therapy costs over 24,000 dollars every month. Through RDF support, Medisave, and insurance payouts, the family no longer has to pay any cash for Zecia’s treatment. However, Choy notes that the emotional support his family received from the community was just as crucial as the financial aid they are given.
“Just Having a Fund Will Not Solve Everything.”
The Rare Disorders Society of Singapore (RDSS) is working to help supplement the support from this new fund. The RDSS explains that the new initiative is lacking something- emotional support. Financial support is most certainly commendable, however patients and caregivers require other forms of care as well. The RDSS will initiate activities and events for the siblings and the caregivers of patients.
In other words, while this fund will not solve all of the problems rare disease patients face in Singapore, it is an incredibly valuable start to supporting this population of citizens.
You can read more about the Rare Disease Fund and how it came about here.
