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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

SMA drug reimbursement delays

Summary

Deputy O'Sullivan called for fairer and faster access to treatments for SMA and criticised HSE delays under the reimbursement system. The Tánaiste said a new framework agreement with the pharmaceutical industry is due and he will raise the matter with the Health Minister.

This week, patients with spinal muscular atrophy, SMA, came to the audiovisual room to highlight their case for equal access to treatments and drugs. As Minister for Health in 2017, the Tánaiste once described the reimbursement system we have as being in serious jeopardy. He may actually have inferred that it was broken. Every paper published since then continues to show HSE non-adherence to timelines as outlined in the Health Act. The Mazars report says the HSE was not adhering to the spirit of the legislation. Subsequently, at least four academic papers have highlighted the decision timelines for reimbursements involving health technology assessments, HTAs, have exceeded that 180 days. The Irish Examiner published an article last year, which noted it was taking 180 days just to get a reply from the National Centre for Pharmacoeconomics, NCPE. In February this year, the Irish Pharmaceutical Healthcare Association, IPHA, published three years of data showing 86% of applications exceeded the legislative timeline. In light of this, and I would appreciate a direct answer if he can, does the Tánaiste believe the HSE is adhering to these timelines and what will we do to ensure it does?

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Simon Harris The Tánaiste Fine Gael

It certainly does not sound like it, based on what the Deputy has said. I know he has done a huge amount of work on the issue of access to medication, particularly for those with rare diseases. I met the Irish Pharmaceutical Healthcare Association approximately two weeks ago. As the Deputy can imagine, we discussed trade and tariffs, but we also discussed that a new framework agreement is due to be negotiated between it and the State. I made a suggestion at that meeting, one which I think they agree with and which I will speak to the Minister for Health about. The discussion and negotiation are always about the quantum, or how much money we are going to spend on new drugs in the next number of years. However, I think the most important and urgent thing to do in that framework is to spend time to get the system and structure right because we ultimately end up buying the drug but it takes too long and there are patients with SMA, many of whom I met back in the day. That is an example. I will ask the Minister for Health to come back to the Deputy on that specifically, but the new framework agreement is a chance, once and for all, to make a broken system work much better.

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