Patients suffering from rare diseases are not receiving adequate treatment because of inequality within the universal healthcare coverage system, a seminar was told on Sunday.
Among these rare diseases are organic acidemia, Duchenne muscular dystrophy, and autoinflammatory syndromes, according to Wichao Kor-charanjit, a pediatric surgeon working at the Queen Sirikit National Institute of Child Health (QSNICH).
The patients are in a minority and receive inadequate treatment because these diseases are not covered by the universal healthcare package, Dr Wichao told the seminar.
This annual seminar, titled "Network of Patients of Rare Diseases", was held at the QSNICH office in Bangkok.
"The chance of getting treatment would be even less if patients need an operation," he said.
As a surgeon, Dr Wichao said he had encountered worse cases involving children with congenital heart defects which constitute only 1% of births in Thailand.
Out of 60,000 children, there are only 4-5 who are born with a heart anomaly.
"Hospitals are shouldering the high cost of orphan drugs and postoperative care for patients with rare disorders," he said.
His statement reflects one of the many problems in Thailand's universal healthcare service.
Universal healthcare comprises the Civil Servant Medical Benefit scheme, the Social Security scheme, and the 30-Baht Gold Card programme.
Chairman of the Heart to Heart Foundation (HHF), Wichai Chokwiwat, said inequalities show up in the universal healthcare coverage scheme despite efforts to close the gap.
"The inequality of coverage under the scheme is blatant and outrageous," Dr Wichai said.
"The Civil Servant Medical Benefit Scheme is superior to the two others, multiplying healthcare costs.
"In the 2017 fiscal year, the expense for 4.8 million civil servants is 71 billion baht while the cost for 48 million gold-card users is 123 billion baht.
"On the other hand, those who qualify for Social Security and the 30-Baht Gold Card Programme must go to hospitals close to their homes.
"They can go anywhere in an emergency, but have to relocate to local hospitals in 72 hours," he said, citing a common criticism of the scheme.