Costs and funding of care for patients in centers for rare diseases in Germany
Alone in Germany, around four million patients live with a rare disease. In the EU, a disease is defined rare if less than 2000 people are affected. In order to improve their health situation, a “National Action Plan for People with Rare Diseases” was adopted in 2013, calling for the implementation of a center model, which is intended to ensure a high-quality and patient-oriented care. The targeted centers are the so-called Type A, B and C centers, which do not differ in quality, but are exclusive in regards to the offered performances.
A sustainable implementation of this model is closely linked to an appropriate remuneration. However, there are indications that the funding of the Centers for Rare Diseases could not be adequate. Therefore, real resource consumption or costs for the care of patients in selected A and B centers are to be collected and compared to the income from existing financing forms. It also examines how funding is designed in regards to specific types of care or indications, and whether compensation systems are compatible with incentives and which incentives influence the quality. Finally, the additional costs from the certification requirements are to be determined and financing models need to be developed. The results of these investigations can be used to remedy the lack of data on the adequacy of the funding of the Centers for Rare Diseases and enable conclusions as to whether the existing remuneration forms are sufficient or whether the legislator has to re-control them. The present project is therefore of high relevance due to the currently controversial cost coverage of the Centers for Rare Diseases in order to maintain and expand existing specialized supply offers.
Funded by the Federal Ministry of Education and Research (BMBF)