Japan Press Weekly

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2012 October 17 - 23 [WELFARE]

Give relief to all patients: intractable disease sufferers

Intractable disease patients are calling for the government’s medical and welfare measures to be improved to cover all such patients who are left in a void between existing assistance programs.

“If I had not become an incurable disease patient, I would have never realized how hard it is for such patients just to live their everyday lives. Even though we are facing a life-or-death crisis, we cannot receive necessary public support,” said Ono Sarasa, a 28-year-old writer.

Since she developed symptoms of autoimmune disease in 2008, she has gone through various difficulties struggling with the health problems all by herself and the heavy financial burdens incurred by medical treatments.

The current law does not accurately cover the needs of patients as many of them cannot receive public assistance even though their symptoms are very similar to ones designated as “intractable diseases” for which the government provides financial support, said Ono.

When it became a ruling party in 2009, the Democratic Party of Japan promised to abolish the law to “assist self-support” of the disabled and establish a new one that covers intractable disease patients who are abandoned without necessary support because they find themselves in a void between existing programs. However, the new law, enacted in June, to “comprehensively support” the disabled added only some intractable diseases to be eligible for financial support.

Among 5,000 to 7,000 rare diseases, patients of only 56 diseases can receive financial assistance for medical treatments.

On October 4, together with other intractable illness sufferers, Ono hosted a symposium at the Diet building.

Shinohara Mieko is one of the 300,000 patients in Japan suffering from myalgic encephalomyelitis (chronic fatigue syndrome), which is not designated as being eligible for either intractable disease assistance or welfare services benefits for disabilities.

Lying down in a mobile bed attached to a wheelchair, Shinohara, 54, introduced the following concerns of other patients: “I have to be in a bed all day and need assistance in everything I do (36-year-old woman),” and “Without assistance, I may also have to die when my parents die (34-year-old woman).”

Shirai Seiichiro, 29, a social worker and intractable disease patient, said, “We want the government to pay attention to how difficult it is for patients to continue on with their daily lives and to enable all people in need of assistance to apply for public assistance, regardless of the difference in their diseases or disabilities.”