Reform of rare-disease subsidies

A panel of the health and welfare ministry has proposed increasing the number of hard-to-cure diseases for which patients may receive subsidies for treatment from the current 56 to more than 300. The ministry hopes to enact a law incorporating the panel’s proposal in and after fiscal 2014.

As the panel discusses the details, it should make public its discussions so that the opinions of patients will be reflected and that the public will understand and support the subsidy system.

In 1971 the ministry started the current support system with the payment of ¥10,000 monthly to sufferers of SMON (subacute myelo-optico-neuropathy). In 1972 it was found that use of quinoform, a medicine for intestinal disorders, caused the nerve disease. Thinking that the system helps accumulate data on hard-to-cure diseases needed for advancing research, the ministry that year adopted a comprehensive outline to push countermeasures for hard-to-cure diseases and made four diseases eligible for subsidies.

At the end of fiscal 2011, some 780,000 patients suffering from 54 diseases were receiving the financial assistance. In fiscal 2012, the total spending under the support system increased to ¥127.8 billion.

The ministry hopes that a law based on the panel’s proposal will stabilize the subsidy system’s financial foundation. In principle, the subsidy cost should be shouldered fifty-fifty by the central and prefectural governments. But the lack of legal footing has led the burden of the central government to decrease to about a quarter of the total cost, causing prefectural governments to complain.

The panel proposed that subsidies should be provided if diseases meet the following conditions: The number of patients is less than 0.1 percent of the population or about 120,000 or less; effective cures have not been established but diagnostic criteria have been established; and long-term medical treatment is necessary.

Doctors who have undergone certain training and have been designated by prefectural governments would examine the conditions of patients and a council at each prefectural government would determine whether they are eligible for subsidies.

Under a system envisaged by the panel, patients with severe conditions who are now exempt from payment obligations would be required to pay a certain percentage of the costs depending on their income level. Given the severe state financial conditions and the need to ensure equity with the financial burdens for medical treatment of aged or disabled people, the proposal may make sense. But the ministry must pay sufficient attention to the fears that patients have expressed about the proposal.

The panel and the ministry also should consider how to help patients with hard-to-cure diseases that will not be covered by the subsidy system because the number of patients exceeds the criterion set by the panel. They also should increase the number hospitals where patients of hard-to-cure diseases can be treated.

As the panel discusses matters related to individual diseases, it should ensure that patients who need help will get it without fail and that the new system will be easy for patients to use.