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Doctor urges public education campaign on rare disorders

The government needs to do more to educate both the public and the medical profession about rare disorders, a senior health official said yesterday at the opening of an international medical conference in Taipei.

"Drugs for these rare disorders are usually very expensive and hard to obtain," said Dr. Lin Shio-jean (林秀娟), deputy director of the Bureau of Health Promotion (BHP).

"But the worst of all is that, as most people and even doctors lack knowledge of rare disorders, many patients with rare disorders have died before they knew what disease they had," she said in her opening speech at the 5th Annual Asia LSD (Lysosomal Storage Disorders) Symposium.

"Last year, the National Health Insurance Bureau reimbursed NT$90 million for expenditures on drugs for rare-disorder patients," Lin said.

The three-day conference at the Grand Hotel has attracted experts from around the world who specialities include LSD, Gaucher disease, Fabry disease and Pompe disease.

The Taiwan Foundation for Rare Disorders (TFRD) has collected reports on about 135 kinds of rare disorders nationwide since it was established in 1999.

"From our establishment till July 31 of this year, 1,424 patients with rare disorders have sought the foundation's help," said Hung Sheng-hui (洪聖惠), of the foundation's public relations division.

"But the actual number of cases of rare disorders may exceed that number," Hung said.

Lin said the BHP's budget for rare disorders was NT$17 million last year.

"As the budget for rare disorders is limited, we cannot afford to spend much of it on research. Most of the budget has to be spent on rare disorder examinations," Lin said.

This year the government passed a law to regulate the distribution of drugs for rare disorders, according to Lin, and divided rare disorders into 16 categories.

According to the foundation, rare disorder patients are a minority of minorities. Its data shows most of the patients diagnosed to date have hereditary metabolic problems.

Given the rarity of these diseases or disorders, research into them costs a lot of money. The foundation says research projects are more likely to be conducted in developed countries with great regard for human rights.
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