Keith Swanick (Fianna Fail)
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I concur with many of the points my colleague mentioned, particularly in respect of Respreeza. It is bad enough to have a chronic obstructive pulmonary disorder, COPD, condition due to smoking but it is a terrible condition to have as a result of alpha-1-antitrypsin deficiency. I would also like a timeline for when that product may be available.

I know there was some discrepancy about the savings mentioned. Approximately €150 million in savings was mentioned since the agreement with the Irish Pharmaceutical Healthcare Association, IPHA in August 2016. Since then only 11 medications have been approved for reimbursement. That seems a low figure. Can we do better? I take on board what Professor Barry said about dealing with 20 drugs in 2012 compared with 70 now. Does the National Centre for Pharmacoeconomics, NCP, need more resources?

The important point to remember about rare diseases is that they have very high mortality rates. Up to 30% of the kids with these diseases die before they reach the age of five. Treatment exists for only 5% of these patients. I understand that it can take up to 50% longer for orphan drugs to go through the process of reimbursement, even up to two years. The national rare disease plan identified the current process as disadvantaging orphan drugs. Are the HSE and the NCP tracking the time taken to reimburse medicines, orphan or traditional, from the initial application to the final decision and do they know the orphan status of the drug and the clinical data implications associated with such small patient populations when assessing the applications?