The Health, Labor and Welfare Ministry has finalized a plan to increase the number of hard-to-cure diseases eligible for medical cost subsidies from 56 to about 300, while asking patients with intractable diseases to shoulder part of their medical expenses, according to the ministry.
A ministry panel approved on Friday the revised plan, which stipulates that intractable disease patients will shoulder a maximum of ¥30,000 per month in medical costs.
The ministry plans to submit a bill for the plan to the ordinary Diet session next year, and to set up a third-party committee to select which intractable diseases will be covered by the system. The ministry hopes the law will come into force in January 2015.
There are thousands of hard-to-cure diseases that cause patients pain and suffering from such problems of nerve, muscle, immune system and hormone abnormalities.
The aim of the subsidy program reform was to correct a perceived lack of fairness, as only 56 of thousands of hard-to-cure diseases were covered by the system. The ministry thus decided to increase the number of diseases eligible for coverage, while asking patients to shoulder a certain amount.
The number of intractable disease subsidy recipients is expected to increase from 780,000 as of fiscal 2011 to 1.5 million in fiscal 2015, according to the ministry.
Under the panel-approved plan, patients with intractable diseases will shoulder 20 percent of their medical costs. The monthly cap is set at ¥2,500 to ¥30,000, depending on annual household income.
Patients whose conditions are judged to be mild would not be covered by the program in principle, but those who pay ¥10,000 or more in monthly medical costs more than three times a year would be covered under the system.
The monthly payment amount for patients on ventilators due to serious diseases such as amyotrophic lateral sclerosis (ALS) is to be limited to ¥1,000 regardless of annual income, the ministry said.
Households receiving welfare benefits will be exempt from paying medical costs.
In late October, the ministry submitted a proposal to its expert committee to set a cap on patients’ medical costs—from ¥3,000 to a maximum of ¥44,400 a month—depending on household income.
After learning of the request, groups of supporters and hard-to-cure disease patients repeatedly called on the ministry and lawmakers of ruling and opposition parties to reduce the burden on patients with severe conditions, which led to the revision of the plan.
“[The revision] is a big step toward the proposal’s passage into law. We can now start to take fresh measures against hard-to-cure diseases,” Tateo Ito, head of the Japan Patients Association, said during a press conference after the committee’s meeting.
Hitomi Sakai, a homemaker from Tokyo with ALS who started using a mechanical ventilator last year, welcomed the ministry’s revision of the system. “If the medical cost is lowered to ¥1,000 a month, that would be very helpful,” she said.
However, the new system has yet to dispel concerns and anxieties of patients suffering from intractable diseases.
Sakai, who currently needs round-the-clock assistance, pays more than ¥60,000 a month to her caregivers. “I want the government to think about providing a support system [to patients] that allows them to live like other people do,” she said.
The medical costs of some patients are expected to increase when the new system takes effect.
“If medical costs increase, I’ll have to reduce the amount of drugs I take,” said a 34-year-old Yokohama woman who suffers from myasthenia gravis, a disease that weakens the muscles throughout the body.
Using medicine to alleviate symptoms of the disorder, the woman works as a household helper four hours a day, three or four days a week, receiving about ¥40,000 a month.
Her mother, who lives with her, works at a facility for people with disabilities. Her annual household income is about ¥3 million.
“I feel sorry for my mother, because I can’t get by without turning to her [for money],” she said.
To be covered by the system, the ministry has stipulated the following conditions: The number of patients receiving subsidies for the disease must account for no more than 0.1 percent of the population; the cause of the disease must be unknown; there must be no cure; and the disease must prevent patients from performing daily activities.
The ministry’s next task will be to ensure fairness and transparency in selecting which diseases are covered by the system.