Amendments to the Rare Diseases Prevention and Medication Act (罕見疾病防治及藥物法) and the Nursing Personnel Act (護理人員法) were passed by the legislature yesterday to make more complete the care and support provided for those afflicted with rare diseases and to improve oversight of nursing institutions.
The changes to the rare disease act were made to guarantee the government’s financial backing of supportive and palliative care for people with rare diseases that are not covered by the National Health Insurance (NHI), to ensure that services such as psychological support and birth care are provided for patients and their families, to accelerate the review process for medications needed by patients to be covered by the NHI, and to establish an emergency drug-supplying mechanism to avoid a sudden shortage or termination of production.
Chinese Nationalist Party (KMT) Legislator Yang Yu-hsin (楊玉欣), who has a rare disease called Miyoshi myopathy — a progressive muscle disorder that causes muscle weakness and atrophy — and uses a wheelchair, said that while the amyotrophic lateral sclerosis “Ice Bucket Challenge” raised public awareness for the rare disease, patient groups, though encouraged by the campaign, are worried that the awareness it raised will not last in the long term.
“The government has the responsibility to institutionalize [both the medical and supportive] care for people with rare diseases,” Yang said.
On the regulations governing the country’s nursing homes, while the existing law states that the health authority is to conduct inspections only when “needed,” the legislature-approved amendments to the Nursing Personnel Act mandated government-authorized examinations of nursing institutions and raised the penalty for institutions’ failures to pass such regular reviews.
“The nursing institutions shall not shun, obstruct or reject the said reviews and inspections,” the revised regulation added.
Institutions failing to pass reviews are to be fined between NT$6,000 and NT$30,000 and forced to close for at least a month and for up to a year if no improvement is made after the first penalty.
Fines of between NT$60,000 and NT$300,000 would be issued if the violations were made by institutions that provide long-term residential care.
The amendments have come on the heels of the release of a report on senior citizens’ nursing homes by the Executive Yuan’s Consumer Protection Commission on Monday, which found that 90 percent (18 out of 20) of the nursing homes for elderly people inspected in six cities and counties were not up to standard.
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