The first survey by a support group revealed that children and their families with "rare intractable diseases," which are especially rare among intractable diseases, are suffering financially.

Many parents are unable to work in the care of their children, and support groups are calling for financial support.

“Rare intractable diseases” have a particularly small number of patients among intractable diseases, and many diseases do not have patient groups, so the challenges faced by patients and their families have not been clarified so far.



Therefore, from February to March, a support group conducted the first fact-finding survey of 442 families with children with rare intractable diseases, and received responses from 90 families.



According to the survey, many people complained about the heavy financial burden, and although the costs other than medical expenses vary depending on the type of illness, the average annual cost per child exceeded 370,000 yen.



The breakdown of expenses is


▽ transportation expenses to go to a hospital in another prefecture with a specialist

,


bed charges to use a private room for infectious disease control at the time of admission,


▽ meals with a reduced amount of protein, etc. There are many people who mention the cost of preparing.



In addition, nearly half of the households did not have medical insurance to prepare for surgery and school insurance, and many answered that they were refused because of their illness.



On the other hand, about 30% of households have both parents working full-time, and many said that they cannot work together because they take care of their children.



In the free description, "I'm worried that my household will be under pressure and I'll be able to learn like a healthy child," or "It's difficult to work due to sudden hospitalization, and I have the courage to welcome my second child." There are voices such as "No."



Professor Natsuko Minamino of Toyo University, who is the chairman of the "Healthy Parent-Child Support Association" that conducted the survey, said, "I was surprised that it costs a lot to live a daily life and that there are various restrictions. It is still difficult to say that the issues faced by patients and their families are fully understood, and it is necessary for countries and other countries to conduct large-scale surveys and provide financial support. "