Civil society’s proposal for Horizon Europe, the next EU research framework programme
High prices of new drugs for cancer, hepatitis C and rare diseases in Europe have attracted great media and public attention and have brought the debate about access to medicines into the political spotlight in the EU and globally. Considerable public investments have been made and are being made by European taxpayers to finance scientific excellence and address key societal challenges with a robust EU research programme and budget. However, the EU research and innovation (R&I) programme currently does not attach sufficient upstream safeguards or conditions to public funding to ensure the accessibility, availability and affordability of medical products that result from public investment.
In order to maximise the public return and societal impact of EU biomedical R&I policies, we recommend the introduction of a set of Access Principles in Horizon Europe, to which future beneficiaries of EU R&I funding should commit to and be guided by during the implementation of the projects. Those principles are:
- Needs-driven: R&I priorities should be set according to priority diseases/pathogens as defined by the WHO and be set according to public health and patients’ needs, defined through transparent and inclusive priority-setting processes at national, European and global levels.
- Equitable: allocations for R&I funding should be made on a fair and impartial basis. Attention should also be paid to neglected and underfunded areas and diseases, as well as on specific needs of disadvantaged, vulnerable and marginalised groups.
- Effective: R&I products should bring significant added therapeutic value and be delivered in appropriate forms for the contexts in which they need to be used.
- Accessible, available and affordable: R&I should result in health technologies that are accessible and available in a timely manner and are delivered in appropriate quantities for those who need them. Such technologies should be available at a price that individuals, health systems and health providers can afford.
- Efficient: Coordination and collaboration should be maximised in R&I to increase efficiency and avoid duplication or waste of resources. R&I should adopt Open Science principles and open knowledge approaches.
- Public-interest driven ownership of results: Ownership and management of publicly funded R&I results should be driven by the public interest and explore various forms of IP management and licensing with this goal in mind. The following approaches should be considered: publication, non-exclusive licensing, donations of intellectual property and participation in public sector patent pools, among others.
- Transparency: Further efforts are needed to ensure R&I, its funding processes and the prices of resulting technologies are made transparent. Beneficiaries receiving funding should make R&I costs, manufacturing costs, the costs of acquiring intellectual property rights, the patents landscape around drugs, the registration costs, the assessment of the economic value of the various exemptions and subsidies that benefit the private company, the real clinical benefits of the products for patients in comparison to existing therapeutic options, publicly available.