On December 9, 2014, we held talks with the new section chief and three other officials from the Social Welfare Bureaus Department of Health and Welfare for Persons with Disabilities Policy Planning Division. Eight JMEA patient, caregiver, and support members joined JMEA board members at the meeting.
We submitted our request letter to the Health Minister and provided the officials with ME resources such as our informational leaflets and DVDs. Since this was our first meeting with the new section chief, we briefed him about the severity and characteristics of ME. We explained that some patients pay JPY 25,000 out-of-pocket per month to rent electric wheelchairs due to the unavailability of any public disability assistance. Since many are unable to afford electric wheelchairs, they are unable to participate in activities like this meeting. We know of one patient who incurs over JPY 100,000 for private assistance due to her access to public welfare services.
ME/CFS is excluded from covered diseases under the Act on General Support for Persons with Disabilities, even though the expansion of covered diseases to 153 diseases was approved at the
58th meeting of the Social Security Council Disabled Persons Group. We sought and received confirmation that, in order for a disease to be included in the Act, it need not be designated as a rare or intractable disease, and that the actual need for welfare services and impairment level of patients’ activities of daily living will also be given consideration in future deliberations.
We discussed possible measures for patients whose symptoms continue to worsen as they wait for the new ME/CFS diagnostic criteria which include objective markers-a requirement for inclusion of a disease in the Act-to be established. The Ministry’s ME/CFS patient survey will come out in March 2015, bringing the plight of patients’ situations to light. We requested that the Department for Health and Welfare for Persons with Disabilities coordinate with the Health Services Bureau’s Specific Diseases Control Policy Planning Division to inform administrative agencies responsible for issuing disability certification about the serious nature of the disease.