EIVE – Developing innovative health care concepts for rare diseases

[1]

© EIVE

The aim of this multi-partner project funded by the German Federal Ministry of Education and Research is developing innovative health care concepts for the management of rare diseases.

Sub-project: Improving the provision and financing of assistive technology used in the management of rare diseases. 

  Background:
People with rare diseases often need assistive technology devices, which can be costly and require substantial customization. An insurer’s refusal to cover an expensive device can leave patients facing financial difficulties and restrict their ability to participate in the normal activities of daily life.Instead of a uniform system for financing and reimbursing assistive technology, Germany has a patchwork of contracts and agreements between insurers and providers, both at the federal and state levels.

  Aims:
     - To analyse problems in the financing and reimbursement of assistive
        technology devices that are used in the management of rare diseases.
     - To describe ways to improve the current situation.

  Methods:
I. Data from published and grey literature will be used to analyse payment flows
   and supply chain activities between the various actors involved in the production
   and provision of assistive technology devices. The focus will be on the following
   rare diseases:
  Ø  Marfan syndrome
  Ø  Epidermolysis bullosa
  Ø  Amyotrophic lateral sclerosis (ALS) and Duchenne muscular dystrophy
  Ø  Wilson’s disease
  Ø  NBIA (Neurodegeneration with brain iron accumulation)
II. Telephone interviews will be conducted with patients concerning the following
     issues:
  Ø  Problems in the provision of assistive technology
  Ø  Issues related to insurers’ coverage decisions/claims denials 
III. The data will be analysed, and the results will be used to identify and describe
     opportunities for improving the financing and reimbursement of assistive
     technology devices.