Japan Press Weekly

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2013 November 27 - December 3 [WELFARE]

More than 40,000 yen a month will be imposed on severe intractable disease patients

Akahata Sunday edition

The government is seeking to impose heavier financial burdens on intractable disease patients and exclude mild case patients from the subsidy program in exchange for an increase in the number of intractable diseases eligible for the medical subsidy.

The program has functioned to encourage patients requiring expensive, long-term medical attention to continue receiving necessary treatments and has been useful for therapy research on intractable diseases.

The ministry of health and welfare, however, is planning to end the program for free medical care for serious case patients and charge them up to 44,400 yen a month. Tax-exempt households with intractable disease family members now pay no fees for the medical care but the government intends to require that they shoulder 3,000 - 6,000 yen a month for the care. The authorities are considering putting this plan into effect from January 2015.

Sasaki Koichi, 66, is expected to pay 44,400 yen per month for his medical expenses, though he now receives the treatment free of charge.

Sasaki developed amyotrophic lateral sclerosis (ALS) 17 years ago. On a mechanical ventilator, he can neither speak nor move.

He conveys what he wants to say to care staff with the use of a board of letters by staring at the letters one by one with his eyes which he can move. He uses his cheek to touch a sensor to call care staff. Just a 3mm-difference in positioning will prevent him from reaching the sensor. “Even if a mosquito is sucking my blood, there is nothing I can do,” said Sasaki.

He needs 24-hour care at home. He spends more than 100,000 yen a month on care services because the nursing-care insurance coverage is not enough. Due to a decline in muscle and skin condition, he requires moderate air circulation all the time, costing about 40,000 yen in the winter and 20,000 yen in the summer. In addition, the authorities are considering collecting medical treatment costs from him.

Sasaki via the letter board argued, “The government should provide proper assistance to persons with disabilities. Medical attention should be free of charge.”

Secretary General of the Japan Patients Association Mizutani Koji said, “Persons with intractable diseases need to be under lifelong medical supervision. We call on the government to improve the existing system so that they can continue receiving medical care without financial worries.”