| Grant number: | 19/02519-0 |
| Support Opportunities: | Regular Research Grants |
| Start date: | May 01, 2020 |
| End date: | April 30, 2023 |
| Field of knowledge: | Health Sciences - Collective Health - Public Health |
| Agreement: | Trans-Atlantic Platform for the Social Sciences and Humanities |
| Principal Investigator: | Fernando Mussa Abujamra Aith |
| Grantee: | Fernando Mussa Abujamra Aith |
| Principal researcher abroad: | Conor Douglas |
| Institution abroad: | York University, Canada |
| Principal researcher abroad: | Ellen Moors |
| Institution abroad: | Utrecht University (UU), Netherlands |
| Principal researcher abroad: | Rabeharisoa Vololona |
| Institution abroad: | ParisTech, France |
| Host Institution: | Faculdade de Saúde Pública (FSP). Universidade de São Paulo (USP). São Paulo , SP, Brazil |
| Associated researchers: | Claudio Roberto Cordovil Oliveira ; Jarno Hoekman ; Marina de Neiva Borba ; Robert Peter Hagendijk ; Wouter Boon |
| Associated scholarship(s): | 21/05457-5 - Social Pharmaceutical Innovation for Unmet Medical Needs - SPIN Brazil, BP.PD |
Abstract
For many patients around the world, medical drugs and treatments are either unavailable or unaffordable. Many of these patients are from poor economic backgrounds, and are not seen as a viable market by the pharmaceutical industry. Other patients (like those with rare diseases) do not represent a large enough consumer base to justify the pharmaceutical industry's significant research investments required for the development of new treatments. All those patients therefore are facing what is called "unmet medical needs". In the domain of rare diseases, specific policies have been implemented in different countries that have resulted in some growth in the number of drugs for these diseases. However, many conditions are still lacking treatments, and when they are available, they are typically very expensive and thus inaccessible and unsustainable. In recent years, forms of social pharmaceutical innovation (SPIN) have emerged, which are novel models of research and development (R&D) that seek to address health inequalities and vulnerabilities related to rare diseases and other unmet medical needs. SPIN is not driven exclusively by profit making, and is characterized by collaborations between private companies, public institutions and diverse concerned groups (including patient organizations). Our project brings together teams from Canada, Brazil, France and the Netherlands with longstanding expertise in social aspects relating to pharmaceutical innovation. We will be conducting cross-national comparative research on different kinds of SPIN, namely R&D partnerships, alternative forms of provision and licensing, and alternative regulatory frameworks for coverage. Our objective is to provide a detailed understanding of the medical, social, economic, political, and regulatory contexts that shape these SPIN initiatives. In doing so, we will be disseminating the experiences of those directly involved in the SPIN initiatives we are studying, and will thus be contributing to SPIN itself. (AU)
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