Taipei Times
Date: Nov 24, 2019
By: Staff writer, with CNA

Eleven rare diseases are to be added to the medical conditions covered by the Patient Right to Autonomy Act (病人自主權利法), the ministry announced on Friday last week.

The act, which went into effect on Jan. 6 and is the first of its kind in Asia, gives people the right to decide in advance what medical treatment or healthcare option they will accept if they are terminally ill, are in an irreversible coma or a permanent vegetative state, have advanced dementia or meet other conditions announced by authorities.

Such patients are entitled to terminate life-sustaining treatment, as well as artificial nutrition.

As part of the act’s implementation and after a series of meetings with experts over the past year, the ministry has named 11 rare diseases — multiple system atrophy, Duchenne muscular dystrophy, hereditary epidermolysis bullosa, Huntington disease, limb-girdle muscular dystrophy, nemaline myopathy, spinocerebellar ataxia, spinal muscular atrophy, amyotrophic lateral sclerosis, cystic fibrosis and primary pulmonary hypertension — as conditions that are unbearable or incurable.
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