hankyoreh

South Chungcheong Province

By Kim So-youn, staff reporter

President Park Geun-hye contributed money to the Ice Bucket Challenge, a popular worldwide campaign to raise awareness of the rare and incurable disease amyotrophic lateral sclerosis (ALS). But her administration actually cut its 2015 budget for the disease, Ministry of Health and Welfare data show.

The figures, received from the ministry on Sept. 21 by New Politics Alliance for Democracy (NPAD) lawmaker Kim Yong-ik, put the administration’s 2015 budget for medical cost support for people suffering from rare and incurable genetic diseases, including ALS, at 26.7 billion won (US$25.6 million) - three billion won less than the 2014 budget of 29.7 billion won (US$28.4 million).

That total for the medical cost supporting program was also slashed from 31.5 billion won (US$30.2 million) each in 2012 and 2013, indicating a shrinking trend since Park’s inauguration last year.

Aug. 22. After taking the challenge

The program subsidizes health care, nursing, and ventilator rental fees for low-income patients making 300% or less of the minimum cost of living, or 3.78 million won (US$3,620) a month for a family of three. It is available only to those suffering from one of 134 types of rare and incurable diseases, with around 25,800 receiving benefits last year.

An estimated 500,000 South Koreans suffer from one of 1,200 forms of rare and incurable diseases, which means most are ineligible for government assistance. The diseases in question typically carry high medical costs, as their causes may be unclear and patients may have to undergo long-term treatment.

The Ice Bucket Challenge campaign began last year in the US, with participants volunteering to dump ice water on their heads and/or donate US$100 to help patients and support the development of ALS treatments. It ended up attracting major attention, with around 400 prominent South Koreans also taking part. Park recently participated by making a donation; some of the politicians who have been doused include Kim Moo-sung and Na Kyung-won from the ruling Saenuri Party and Park Ji-won from the NPAD.

The reason the treatment budget was cut, despite the urgent need for social support, stemmed from the fact that it is a discretionary project without a legal basis. The administration’s discretionary efforts have borne the brunt of cuts amid a growing fiscal deficit as the 2015 budget swells without corresponding increases in tax revenue. Mandatory social service spending programs that are written into law, in contrast, are ineligible for cuts.

An accounts analysis report from July 2013 by the National Assembly Budget Office found that “rare and incurable diseases tend to carry higher medical costs, as they often require ongoing and costly treatment and expensive medications.”

“Because there is a danger that support may be cut off at any moment for [projects] without a legal basis, such a legal basis needs to be established for the stable implementation of the project,” the report concluded.

Kim Yong-ik criticized Park for the mixed message on ALS.

“President Park outwardly took part in the Ice Bucket Challenge, as though she was helping people with rare and incurable diseases, but then she went and slashed the budget for them,” he said.

“The administration is touting itself as the first ever with a social service budget of over 30%, but look closer and you’ll see that the budget for disadvantaged groups and the working class has dropped,” Kim added.

“The National Assembly, at least, needs to increase the budget for disadvantaged people, including those with rare and incurable diseases,” he declared.

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