[EDITORIALS]Help those with rare diseases

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[EDITORIALS]Help those with rare diseases

A recent article by the JoongAng Ilbo on the realities faced by patients suffering from rare and incurable diseases in Korea gave a vivid account of the painful predicament of these people. Among the 500,000 patients, only 6% receive help for treatment costs from the government. Most of the costs are not covered by health insurance, and so patients must bear the full brunt of those expenses.
An estimated 200 rare and incurable diseases have been identified in Korea, but since proper and meticulous research has not been carried out, that is an extremely small portion of the total. The reality is, there is no legal basis for the government to support those suffering from these diseases. Many patients and their families thus give up treatment because of the staggering cost. On Oct. 12, a tragic story of a father who cut off his daughter’s artificial respirator because of the enormous debt incurred in treating her rare disease can be termed a social murder.
Since the government is leaving the matter alone, the social perception is bound to be negative. It is difficult to expect help from corporations or social welfare institutions. The reality is that 50 or so groups formed by patients and their families are sharing disease information and giving mutual assistance on treatment fees, taking on the role that ought to be filled by the government.
This lack of policy and social apathy is an embarrassing feature of our society. How long shall we leave alone our government system that does not even provide minimal support? The National Institutes of Health of the United States allots 20% of its budget to this sector, keeping track of more than 6,000 rare and incurable diseases they have designated.
The government must undertake full-scale research and establish comprehensive support and management systems for diagnosis and treatment of them. If these diseases are confronted early on, the cost of treatment will decrease significantly. To set up such a social safety net, we must not spare any money in terms of the budget and tax system. The government must take action so that rare and incurable diseases are not regarded as a punishment from Heaven.

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