– Japan
On October 30, an online article in The Japan News, discusses how Japan’s Health, Labor and Welfare Ministry submits a proposal to review the country’s public assistance system for patients with rare or intractable diseases. Currently, the Japanese government subsidizes medical expenses of patients who suffer from 56 rare diseases. If the disease is severe, the government covers all of the medical expenses. Under the new proposed plan:
• Patients with rare diseases will be responsible for 20% of their medical expenses
• There is a cap on the amount patients have to pay, depending on household income
• Number of rare diseases will increase from 56 to 300.
After reaching a conclusion next month on how to handle rare diseases financially, the Ministry will introduce a new law that becomes effective in January 2015.
II – Australia
On October 25, Australia’s PBAC (Pharmaceutical Benefits Advisory Committee), following a decision in July 2013 to defer a recommendation on the reimbursement of Vertex Pharmaceutical’s orphan drug Kalydeco (Ivacaftor) for Cystic Fibrosis (CF), has decided again to defer a decision – until March 2014. Vertex Pharmaceuticals needs to submit their submission by November 6. About 200 CF patients who have the G551D mutation qualify for Kalydeco.
The alphabetical list of designated orphan drugs in Australia, from the Australian
http://orphandruganaut.wordpress.com/2013/10/31/rare-diseases-and-orphan-drugs-global-news-10-31-13/