Spinraza pricing negotiations
Deputy John Curran asked about negotiations with the manufacturer after the HSE refused reimbursement for Spinraza and queried whether the pricing law should be reviewed. The Minister of State said the process was independent of politicians, the company had re-engaged with the HSE, and no timeline for a decision was available.
At the end of February, the HSE decided not to reimburse Spinraza at its then price. It said that the company involved had 28 days to make further observations or submissions. Has there been an engagement between the company and the HSE during that period? If so, what is the current state of play? If no progress is being made, what steps can the Government take to review the Health (Pricing and Supply of Medical Goods) Act 2013? This drug is available to children in every other European country. We cannot make it available because we are caught up in our own red tape. If the process is not working, can we look at reviewing the 2013 Act?
Comment on this
The Deputy has raised two questions, one of which is the broader question of whether we should review what we do and, if so, how we should review it. As Deputies are well aware, the current process is independent of politicians. Under the Act, the Minister of the day does not decide whether drugs are approved. As the Deputy knows, the timeline for the negotiations was extended. The company has re-engaged with the HSE. We are awaiting the outcome of those negotiations to get the latest update.
Comment on this
I do not have a timeline or a specific date to bring an end to it.