In July 2018, two members of the Beneluxa Initiative on Pharmaceutical Policy (Belgium and the Netherlands) completed a joint negotiation for the reimbursement of Spinraza. However, this joint negotiation process commenced when Ireland had only opened negotiations with Belgium, the Netherlands, Austria and Luxembourg, with a view to joining the existing collaboration between these four countries.
The Deputy will appreciate that as a candidate country, Ireland was not notified, due to confidentiality arrangements that negotiations were occurring for the reimbursement of Spinraza and we were not party to the details of the negotiations, or indeed the final agreed price which was agreed between these parties as part of a commercially confidential arrangement.
There is no transparency around final agreed prices in Ireland and in Europe due to Industry’s insistence on commercial confidentiality which means that countries have neither certainty nor predictability on prices.
Despite lengthy engagement with the manufacturer, the HSE was unable to come to an agreement with the company for the reimbursement of Spinraza at a price that is viable.
The HSE has written to the company involved and informed them of the proposal to refuse reimbursement at the current price offering. Under the requirements of the Health (Pricing and Supply of Medical Goods) Act 2013 the company now has 28 days to respond or make representations to the HSE’s proposed decision.
The HSE remains open to considering any new evidence or information which emerges regarding the clinical effectiveness or price of this medicine.