"We are not allowed to prescribe the drugs before we have the official document in our hands. Patients plead with us, but doctors can only wait helplessly before the permission comes," he added.
Patients and doctors called on the bureau to allow the doctors to prescribe the drugs before the official review to grant free medication has concluded. But since there is no reported case of a patient dying during the review process, doctors are wary the procedure will change.
"A review process is a missed opportunity to save patients' lives," Lee said.
"Patients with acute PAH could die at any time."
About one in a million people suffer from the disease. Currently, 27 patients nationwide reported their cases to the Taiwan Foundation for Rare Diseases, a grassroots organization which has helped them fight for their right to medical care. About 20 or 30 Taiwanese contract the disease every year.
RSS