About us - Medicijn voor de Maatschappij

About Medicine for Society

Medicine for Society is a platform for sustainable and affordable access to medicines for rare diseases. We are a platform for information exchange and collaboration and conduct projects to provide long term access to medicines for patients that suffer from rare diseases. We research laws, practice and policies regarding medicines for rare diseases.

Our goal

Patients need an effective and safe treatment, also if they have a rare disease. This is only possible if medicines for rare diseases are available for a socially responsible price. To achieve that, it is important that all stakeholders (physicians, pharmacists, pharmaceutical companies, patients, etc.) collaborate. The aim of Medicine for Society is to promote the collaboration and to connect these stakeholders. Our goal is to make medicines for rare diseases available and affordable, share knowledge, research and conduct projects.

The initiative

Frequently, there are accessibility issues regarding medicines for rare diseases, partly because of uncertainty in effectiveness. More often, costs are a key issue: research and development costs are too high for the industry or the market price is too high for reimbursement (payers). Medicine for Society wants to study these problems and provide a platform to collaborate and work on sustainable solutions with the aim of helping patients with a rare disease.

Medicine for Society is an initiative of Amsterdam UMC, founded by specialist for internal diseases and professor of inheritable metabolic diseases Carla Hollak and hospital pharmacist Marleen Kemper.

The initiative was established after Hollak and Kemper decided to compound a medicine for a rare disease in the hospital pharmacy. This medicine was inaccessible after healthcare insurers stopped reimbursement, after the market price increased significantly. This initiative got a lot of media attention and was featured in the Dutch national prime-time news.

Our activities

1. Platform for information exchange and collaboration for medicines for rare diseases: share knowledge and connect stakeholders.

2. Projects: contribute to long-term affordable access of particular medicines.

3. Scientific research: obtain knowledge and develop tools that can contribute to structural solutions. This can vary from clinical studies to research on accessibility or rules and regulations.

Funding

Medicine for Society was awarded project funding of 5 million euros funding by a national lottery (Nationale Postcode Loterij) in February 2019. This led to the start of the platform in the second half of 2019.