Petition of the DIG PKU for the establishment of specialized medical outpatient clinics also for adults with rare metabolic disorders rejected
Adults with inborn errors of metabolism continue to have no legal claim to specialist medical care – § 116 b paragraph 2 of SGB V remains unchanged. The ASIM will continue to remain politically active in order to repeal this unfounded and absurd restriction in §116.
Press Release of the DIG PKU concerning TSVG
In a query addressed to politicians, the DIG PKU demands the warranty of an adequate care for patients with inborn errors of metabolism
To Politics
Press Release by the G-BA / Opinions of the ASIM
The press release No. 09/2017 by the Common Federal Committee, Germany (Gemeinsamen Bundesausschuss) under §1 SGB V: Dietetic Therapy for Patients Suffering from Rare Inborn Errors of Metabolism and Mucoviscidosis to be available on presription
Pressemitteilung Nr. 09-2017 vom 16. März 2017 des G-BA – Ernährungstherapie (Press Release)
Statement of the ASIM
The Statement of the ASIM on the Medical Therapy Guidelines (Heilmittelrichtlinien – HeilM.RL) for the Common Federal Committee, Germany (Gemeinsamen Bundesausschuss – G-BA)
Outpatient nutrition consultation for rare diseases and cystic fibrosis
may be requested at the ASIM office at
Email: I.Peukert@outlook.de
Alteration of § 116b SGB V
SGB V § 116b addresses the outpatient health care by medically specialized consultants.
No. 2 specifies rare diseases and conditions with correspondingly few numbers of cases that form part of this paragraph. Listed below j) is:
Medical specialist care for children with inborn errors of metabolism
In conjunction with other registered medical associations such as the APS, the ASIM claims a modification of this paragraph. Inborn errors of metabolism do subsist for a lifetime. Especially to adults suffering from these diseases no adequate medical treatment is rendered in Germany. The limitation to children needs to be abolished in this paragraph!
