Editorial: 'Difficult to cure disease' medical benefit cut hurts patients, researchers

Some 148,000 people with difficult to cure diseases whose symptoms have been labeled "less serious" under Japan's medical fee subsidy system have had their benefits cut off, according to a Ministry of Health, Labor and Welfare survey. That is about 20 percent of all patients receiving the subsidies.

"Difficult to cure" diseases are ailments with unknown causes and for which there is no cure. Even "less serious conditions" can change or worsen. Thus it is necessary to gather information on each individual patient, to better understand their conditions and provide meticulous care.

The government has long subsidized the medical expenses of people with 56 specific difficult to treat conditions, but there are many other ailments with only a handful of patients each. This prompted the government to expand the subsidies to 331 conditions in a 2015 implementation of the difficult to cure diseases act. Standard health insurance covers 70 percent of a person's medical bills, but coverage for people with difficult to cure diseases is 80 percent. Furthermore, patients' out-of-pocket payments are capped at 30,000 yen a month if they are below a certain income level.

In addition to expanding the list of covered illnesses to 331, the 2015 law also included a measure to eliminate coverage for patients with "less serious" conditions. People in this category who need costly continuous treatment can stay on the benefit list, but anyone else who is judged by a doctor to be in the less serious slot and who is labeled "non-certified" by their prefectural government is to have their benefits stopped.

The health ministry survey counted some 84,000 "non-certified" people across Japan. Another 64,000 people or so did not apply for benefits renewal with their prefectural government after their conditions had been pronounced "less serious" by a doctor, among other reasons.

Many people with a "difficult to cure disease" must go to multiple medical institutions and endure a long wait from the onset of symptoms to finally have their diagnoses finalized. There are some people who even lose their jobs due to the time needed for treatment and hospital visits. These patients are extremely anxious about losing their medical subsidies.

One of the major factors behind the lack of progress on difficult to cure disease research is the small number of patients with each ailment, meaning there are few medical specialists for those conditions and pharmaceutical companies have little incentive to develop new drugs for them. For this reason, under the previous subsidy system patients had to submit a medical certificate from a doctor, meaning the number of people with each condition could be counted and a data pool on the illnesses could be created for use by researchers.

However, by cutting people with less severe conditions out of the system, there are worries that the already small sample sizes for each disease will be further reduced.

Ending benefits simply because a person's condition is deemed "less serious" is a serious disadvantage both to the patients and researchers. The health ministry is now doing a study on the living conditions of people deprived of benefits. We call for the subsidy system to be managed to meet real-world needs.