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Background: There is wide debate on the cost of some pharmaceutical products and the impact this has on access to medicine. Little publicized knowledge on the public and philanthropic contribution to research and development costs exists so far. The objective of work reported here was to collect information on public contributions to research funding and thus contribute to the discussion on return on public investment. Methods: A multi-level search process was developed to search for public and philanthropic research funding based on 3 main steps: (1) identification of all generic and molecular names and terms, (2) systematic search for pre-marketing pathway information and related research funding, (3) systematic search for corresponding research funding amounts. Three Paediatric Orphan Drugs (Spinraza®, Brineura®, Crysvita®), which were approved by the European Medicines Agency (EMA) in 2017, were chosen to pilot the methods. Results: We estimated that public/philanthropic contributions to funding of product-related research ranged between approximately € 20 million (Spinraza®) and € 31 million (Brineura®). However, this is a very conservative estimate since pharmaceutical development calls upon basic research, which does not mention product-specific terms. For instance, for research into SMA as a whole, public and philanthropic research funding contributions totalling € 165 million were identified. Conclusions: Researching public and philanthropic R & D funding proved to be difficult and time consuming. Further piloting including the refinement and standardisation of the search strategy is underway.

Assessing the Public and Philanthropic Financial Contribution to the Development of New Drugs: A Bibliographic Analysis