This is a guest blog post from Shohei Matsumoto of the Japan Hyperinsulinism Patients and Families Association (JHIA).
“In order to secure support from the government for the challenges faced by families of patients with hyperinsulinemic hypoglycemia, our association submitted a “Request for Research on Hyperinsulinemic Hypoglycemia” to the Minister of Health, Labour and Welfare. We arranged a meeting with representatives from the Ministry of Health, Labour and Welfare, the Ministry of Education, Culture, Sports, Science and Technology, and the Children and Family Agency, where seven members of our patient association, including the representative and vice representative, participated.”
“As this condition is a rare disease, appropriate support is lacking, often falling through the cracks of existing systems. Some necessary treatments and tests are still not covered by insurance, and there are significant disparities in medical care across kindergartens, schools, and welfare facilities, resulting in a situation where not everyone receives adequate support. We held discussions to raise awareness of these issues with the national and local governments and to encourage collaboration with the patient association towards finding solutions.”
“While not everything can be realized immediately, we will continue to raise our voices and learn and act ourselves, so that not only our current patients but also the children who will be born in the future can live in a more accessible society. We sincerely appreciate your continued warm support.”
Click here to read the original blog post on the JHIA site.
