The doctor plays a crucial role in first identifying or diagnosing the disease, then treating or managing it.
The very first treatment for SMA given in Malaysia was administered in UMMC by paediatrician Dr Tae Sok Kun, Prof Thong and nurse Nur Emylia Jamaludin. — Prof Dr THONG MEOW KEONG
This means that they are not available for regular prescription in Health Ministry hospitals, nor is their cost covered under the hospital’s budget if permission is obtained to prescribe them. Fortunately, there are other ways for doctors to help their patients get these treatments, albeit in limited numbers.
Only patients cared for by the doctors involved in the trial, who meet the strict criteria listed, will have an opportunity to participate in it. She adds: “We want to come up with a patient registry so that it is easier to identify these patients because some of them stay very far away.” Prof Thong shares that UMMC was one of the first hospitals in Malaysia to get involved in SMA treatment via a similar programme.
According to Dr Poorani, two HTA patients were also fortunate enough to have their names drawn to receive the gene therapy. “That’s not true; we always advocate a holistic approach to treatment – it’s not just about the pharmacologic agent, it’s also about the non-pharmacological management,” says Prof Thong.
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