Out-of-pocket expenses for rare disease are astronomical, and the Ministry of Health (MOH), is taking time to find a more positive way to help benefit children and their families burdened by high medical bills in Singapore, originally reported by The Strait Times. The Senior Minister for the State for Health, Chee Hong Tat, expressed to the Parliament that a fund may exist in the near future to aid these families. They are hoping to pull from the government, company donations, charities, advocate groups and donors to contribute to these funds.
Ministry of Health is making a push to also study insurance/discretionary funds, for example, Medifund and Medication Assistance Fund. Chee shared they are planning to formulate a proposal very soon to provide different potential options.
Dr. Tan Wu Meng of Jurong GRC, also shared the extreme expenses these family face, somewhere up to $10,000/week for certain medications. Not to mention, these medications will only continue through out their lives and become higher dosage with age. It’s becoming more common that private insurers are denying coverage for some rare disease cases. Dr. Tan knows there’s a problem.
In Singapore alone, 2,000-3,000 patients suffer from rare diseases. One of those families are the Tengs, whose one-year-old baby boy Christopher developed bile acid synthesis disorder upon birth. This disease requires medication, specifically cholic acid, for the rest of his life. That medication alone costs $5,000 a month.
Luckily for the family, Mr. Chee reported that KK Women and Children’s Hospital has stepped up to try and find an alternative drug manufacturer with the intent to find a lower cost to the family. Mr. Chee himself has reached out to friends and colleagues to see what he personally can do to help. Yet, there are more families than the Tengs that need help. Hopefully the Ministry of Health can find some valuable and helpful options to aid all the families in need.
