Reported by Strait Times, it was announced by Ministry of Health last week that there may be a potential fund developed to help children who suffer not only from a rare disease, but the steep costs that come with it. Yet, before a fund like this can happen, all aspects need to be thought through that allow for wide, sustainable support.
Executive director of patient care advocacy group called Rainbow Across Borders, shared that this mission and focus is right on as these children are the future. Yet, he expresses there should be support for young adults as well, and funding needs to be consistent and available for the continued treatment that many of these kids will face. According to Rainbow estimates, Singaporeans with rare diseases range from 2,000-3,000 individuals. Thankfully for some, insurance covers a majority of expenses. Chloe’s, a 9-year-old girl suffering from a rare disease, family has been able to squeak by with insurance and by making affordable payments, yet once their yearly limit is hit, then they need to find another supplement of income to cover expenses.
While future rare disease funding will be incredibly helpful to covering the costs of treatments, Chloe’s father Mr. Mah expressed that those expenses aren’t the end of it. Mr. Mah also is a apart of Rare Disorders Society Singapore and believes a fund program like this should also provide support for the families/caregivers of the patients. Amelia Teng is a mother of a 1-year-old with bile acid synthesis disease, a condition which interferes with bile break down that you can read more about here. She has to pay $5,000 a month for the rest of her child’s life. MOH putting together a fund like this could help families just like these. Families hope that the fund can accept donations from several different groups (charities, corporations, donors, communities, etc.) and be able to accumulate more growth.
As the fund potential develops and awareness on rare diseases continue to spread, hope is amplified for these families that greatly deserve it.