Representatives of families with children with spinal muscular atrophy, an intractable disease in which the general muscle strength is weakened, visited the Children's and Family Agency on the 19th and submitted a request for nationwide testing of newborns for early detection of the disease.
"Spinal muscular atrophy" is a progressive intractable disease in which muscle strength of the whole body decreases, and it is said that 2% of children die or need a ventilator by the time they are 9 years old if treatment is not performed early when they develop in infants.
It can be detected before the onset of the disease by a test that collects the blood of newborns, but since the cost of testing is not included in the diseases covered by the national government at public expense, it is up to the local government to decide whether to carry out the test.
For this reason, on the 19th, representatives of organizations made up of patients and their families, as well as doctors, visited the Children's and Family Agency and handed over a written request to Minister Kato in charge of children's policy.
The
petition calls for ▽ testing of newborns nationwide at public expense as soon as possible, and
▽ a nationwide system that allows early treatment in the event of a positive test is established.
Yuko Oyama, president of the SMA (Spinal Muscular Atrophy) Family Association, said, "Early treatment is an important disease, and the future of babies is currently changing significantly due to regional disparities.