Need to revamp rules on funding orphan medicinal products

I sometimes hear from families who are desperate to access medicines to alleviate suffering, or prolong life, but which the HSE won’t fund because they are too expensive. I attended the Health Committee on 12th July to question officials from the HSE, Mr John Hennessy, Mr Shaun Flanagan, and Mr Ray Mitchell, and the National Centre for Pharmacoeconomics (NCPE), Prof Michael Barry and Dr Lesley Tilson, about the Government’s policy on orphan drugs.

These are licensed medicines for the treatment of rare diseases and conditions. Because the cohort of people who can benefit from them is small, they have more difficulty in meeting the HSE’s test for cost-effectiveness. It is perhaps inevitable that, once there are any budgetary constraints in this area, some people could suffer. It is also the case that pharmaceutical companies charge enormous sums for medicines which, they claim, cost a fortune to research and put on the market.

The fact remains that some of these medicines are approved for funding by other EU countries but are not available to patients in Ireland. Ironically, in some cases these drugs have been manufactured in Ireland.

You can read my exchange with the HSE and NCPE representatives at the Health Committee here:

Health Committee Orphan Drugs