Advertisement

'Red tape stalls fight against rare disease'

Reading Time:2 minutes
Why you can trust SCMP

An engineer with a rare disease says his attempt to seek treatment in the US is being hampered by red tape.

Advertisement

Victor Ho Chi-shing, 32, a mechanical engineer and drummer, suffers from end-state reflex sympathetic dystrophy syndrome, a disorder of the nerves and tissues.

The disease developed after Mr Ho was hit by a taxi two years ago. He now has difficulties swallowing and breathing.

More than 20 doctors have provided no effective treatment, and Queen Elizabeth Hospital has described his as the most serious case it has come across.

Mr Ho applied to the Government's Health Care and Promotion Fund five months ago. The fund pays for patients suffering rare diseases to seek overseas treatment.

Advertisement

However, he was told a detailed treatment plan and budget, to be prepared by his doctor at the Queen Elizabeth Hospital, must be presented before his application could be processed.

The rule, requiring a local doctor to prepare the treatment, aims to ensure overseas treatment would be cost-effective so money is not wasted.

Advertisement