Fixing programs for rare diseases

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Fixing programs for rare diseases

A group of singers and entertainers helped to stage a charity event last week to raise funds for patients suffering from degenerative, incurable and fatal diseases of the muscular system. Hundreds of audience members chipped in to help a patient support group and the Seung-il Hope Foundation, which is dedicated to assist patients suffering from Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), in their efforts to build a special nursing hospital and home. Popular rapper Sean, who sponsored the event, said that civilians have joined forces to raise funds because a nursing facility for people with severe muscular disorders could never be built under the current government program.

The disease causes motor neurons to degenerate and eventually die, making patients in the later stage completely paralyzed and in need of 24-hour assistance. General hospitals often turn those patients away because they require full-time ventilator and respiratory services, as well as feeding and palliative care.

Our welfare care leaves much to be desired in meeting the standards of around-the-clock care-giving services in countries like Japan. Park Sung-ja, the relative of a patient with ALS, said middle-income families often fall into poverty within years of dedicating themselves to such patients. An official of the Ministry of Health and Welfare said the government understands such hardships but cannot channel extra funding to specific diseases for fear of showing favoritism.

The government has failed to do a good enough job in providing support and care programs for incurable diseases. The number that merits public medical support ballooned to 134 this year from just four in 2001, but over the same period the related budget has only grown from 8.7 billion won ($8.045 million) to 31.5 billion won.

The number of diseases subject to free medical care for low-class families also grew by 37 last month. As such, the government has increased the number under pressure from patient groups and medical practitioners while keeping the budget more or less unchanged.

Like wages, it is hard to modify welfare benefits once they have been decided. Health authorities should set strict standards for reviewing which types of incurable diseases deserve support. The diseases should be graded so that patients and families suffering severe difficulties and pain can get effective benefits. With limited funding, the health care sector needs to be practical and economical to give the best support.
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