Dr. Ciara Conlan:

We believe a better system is possible but will only be delivered by parliaments recognising the problem and working together to find a solution. Governments need to work collectively in order to successfully negotiate with global industry. At the conclusion of the Netherlands Presidency of the European Council in 2017, Health Ministers discussed and made recommendations around the problems associated with monopoly markets and the abuse of the orphan drugs system. The recently established BeNeLuxA and Valletta political groups are a good step on the way to increasing intergovernmental co-operation and this needs ongoing support and commitment. In Britain, Canada and the Netherlands, parliamentary health committees have worked to advance the case for an improved system. The Italian Government proposed a resolution to the World Health Assembly this year seeking to improve transparency of pricing, research and development and production costs, including public sources of funding.

We believe the current research and development model is unsustainable and has the potential to bankrupt healthcare systems and to create a small and powerful oligopoly of hugely profitable drug companies, whose primary interest is on shareholder profits rather than public health. We would like to quote Professor Mariana Mazzucato in her editorial in the British Medical Journal, where she stated, "The first important step to reaching a better deal is for governments to realise that they have the power to actively shape and create markets, and not just remain on the sidelines fixing broken ones, especially in the area of health that is heavily subsidised by the public". This resonates with recommendation No. 10 of this committee's report on evaluating orphan drugs in February 2018, which states:

The Committee recommends that the State and the HSE has some role in innovation, in collaboration with university structure. It is the Committee's view that unless the State has some involvement over the R&D element of the orphan drug and high tech phenomenon we will constantly be on the back foot with regard to funding. The Committee affirms the need for a sustainable, affordable and perhaps even novel model of funding.

We believe the Joint Committee on Health is uniquely placed to take a lead in this area of pursuing reform of the medicines research and development model. We would like to thank the committee for granting us this opportunity to share our perspective. We would also like to take this opportunity to invite members to our annual conference on 16 April, where key experts and stakeholders on access to medicines will come together to discuss the problems and potential solutions. For now, we are happy to take questions.