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.
From Friday, when the list was published, there is to be a two-week period for input from the public, Department of Medical Affairs Director-General Shih Chung-liang (石崇良) said, adding that he expects the list to go into effect in December if there is not
The additions to the act could affect more than 1,700 people, an estimate by groups advocating for those with rare disorders showed.
The act — written to “respect patient autonomy in healthcare, to safeguard their rights to a good death, and to promote a harmonious physician-patient relationship” — was completed in 2015 and promulgated on Jan. 6 the following year, but only went into effect this year.
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