One in four patients in Japan with intractable diseases had their test for coronavirus cancelled or postponed

Written with extracts translated from NHK

November 7 2020

A support group investigated the effects of the spread of the new coronavirus on patients with intractable diseases and found that one in four people had their tests canceled or postponed.

The survey was conducted by the NPO “ASrid”, which supports patients with intractable diseases, and from May to October, 363 people including patients with intractable diseases and their families responded.

When asked about the effects of the new coronavirus on testing,

▽ 3% of people said that they were “cancelled”

▽ 23% of the respondents said that they were “postponed”.

Also, regarding the interview with the attending physician

▽ 4% of people canceled

▽ 33% of the respondents said that they were postponed.

Some people said, “When I had a seizure, I was suspected of being infected with the new coronavirus and refused to see a doctor or have a test.”

When asked about the effects of treatment interruptions, 58% of patients said they “feel life-threatening.”

On the other hand, 29% of patients and their families experienced online medical care, and 98% of them answered that they were “helpful”.

Some people said, “I was very anxious about going out, but I was relieved that I could get the medicine at a local pharmacy without going to the hospital.” There were also voices of anxiety, such as “If you feel sick, your discovery may be delayed.”

The results of this survey will be reported at a forum held in Tokyo on the afternoon of the 7th, with the participation of groups of patients with intractable diseases nationwide.