Photo above: Yuriko Oda, right, with her husband and son in Funabashi, Chiba Prefecture.
JAPAN - The health ministry will undertake drastic reforms to financially support patients suffering from hard-to-cure diseases, including an increase in the number of rare diseases whose sufferers are eligible for subsidies.
The government plans to discuss details as early as fiscal 2013 to make the reform of its support system--the first in about 40 years--in fiscal 2014.
Although some patients worry they will not be able to receive as much support under a new system as they do now, the reform is generally expected to increase the number of intractable diseases for which patients can receive treatment subsidies.
"The government's reform will give us a glimmer of hope," said Hitomi Kawata, 41, at a rare-disease educational event in Tokyo's Marunouchi district on Rare Disease Day on Thursday. She is the mother of 9-year-old Moeka, who uses a wheelchair.
Moeka developed Alexander's disease, a rare neurodegenerative condition that erodes motor control, when she was one year old. A doctor informed Kawata that her daughter would not live long.
About 60 people in Japan suffer from the disease.
Each time Kawata looks at Moeka heading out with a smile to a special school, she tells herself she will neither give up nor give in.
When the government started the support system to subsidize the treatment of hard-to-cure disease patients in 1972, it made four diseases--including Becet's disease--eligible for the subsidies. That number has now increased to 56.
In fiscal 2011, about 780,000 patients received 120 billion yen in financial assistance under the current system.
The number of patients with such diseases is small--this is one of the prerequisite criteria for the government to designate an illness as intractable.
The Health, Labor and Welfare Ministry's panel compiled a proposal in January calling for an increase in the number of patients covered by subsidies to up to 0.1 per cent of the population, or about 120,000 to 130,000, from the current 50,000 or less. More than 300 diseases, including distal myopathy, currently meet the criteria.
The number of hard-to-cure disease patients eligible for subsidies is likely to be more than 1 million under the new system, the panel said.
Research progress expected
Once a disease is designated as hard-to-cure under the new system, the government should be able to collect accurate data on patients nationwide through their specialist doctors--information that will likely contribute to research of the diseases.
Yuriko Oda, 32, who lives with her husband and a son in Funabashi, Chiba Prefecture, was diagnosed 10 years ago with distal myopathy, which causes the gradual weakening of muscles. Her disease has progressed to the point where she can no longer lift even a plastic bottle.
She has high expectations for the government's new support system, saying, "Development of medicines--this is the hope of all patients."
Reform of the system has been a long-standing agenda item for the ministry.
The central government is supposed to contribute half the total medical expenses for rare-disease patients, while local governments provide the other half.
In fiscal 2012, however, the central government could only provide 35 billion yen, or a quarter the total medical expenses, due to a revenue shortfall.
In reality, a scenario in which local governments are forced to bear the brunt of the burden has become common; also the central government has been unable to increase the number of hard-to-cure diseases eligible for subsidies since November 2009.
The Finance Ministry and two others agreed to alleviate the excess burden on local governments under the new system.
What matters now is the extent to which the central government will be able to increase subsidies to rare disease patients.
Patients voice concern
While increasing the number of eligible diseases, the new system will abolish the existing classification under which medical expenses for patients in serious condition are fully covered by public funds.
The government intends to stop support for mildly ill patients, and ask people in serious condition to pay part of their medical costs according to their incomes.
These changes will cause a considerable number of people who receive government benefits under the current system to be excluded from financial support.
The health ministry has not decided how to deal with diseases that are included in the 56 adult ailments that qualify for subsidies but have more than 120,000 to 130,000 patients, the envisaged upper limit of people to be eligible for the new system.
According to an official of a national organisation for patients with Parkinson's disease, which has about 140,000 patients nationwide, "Our members are worried that Parkinson's disease will be removed [from the list of diseases covered by the new system]."
Eiji Hagiwara - head of IBD Network, a group for patients with ulcerative colitis - expressed some satisfaction at the new system, saying it was designed to promote research and strengthen support. There are believed to be more than 100,000 people with ulcerative colitis nationwide.
But Hagiwara also warned that it was "impossible to judge the seriousness of diseases simply from the number of patients." He believes comprehensive measures including education, employment and nursing care are important.
"I want the health ministry to listen to many patients' opinions when considering the new system," he said.