Dáil told HSE cost claim on muscle wasting drug misleading

Health Service Executive claims that a drug to treat children suffering a rare muscle wasting disease would cost €600,000 per child are wrong, Fianna Fáil and Sinn Féin have claimed.

Fianna Fáil deputy leader Dara Calleary said the Health Service Executive's claim that a new drug Spinraza which treats spinal muscular atrophy (SMA) would cost €600,000 per child for the first year and €380,000 a year thereafter are out by up to 50 per cent.

SMA is a rare genetic condition that makes the muscles weaker and causes problems with movement and the families of 25 children suffering with the condition have appealed for Spinraza, which alleviates the condition, to be approved.

Sinn Féin disability spokesman Caoimhghín Ó Caoláin said Ireland is one of only three EU countries refusing to authorise the drug, along with the UK and Estonia. He added, however, that Scotland had unilaterally approved the drug.

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The two TDs accused the HSE of misleading the Government on the cost of drugs when 25 other countries had already approved the drug for use and considered the pricing reasonable.

The HSE last week wrote to Biogen, the company that produces the drug, rejecting the price offer. But Tánaiste Simon Coveney said the door was open to resume talks on pricing.

Mr O Caoláin said that if the Tánaiste could see the distressed parents and children protesting outside Leinster House to appeal for the drug to be funded it would be his “first priority”.

Mr Coveney replied that it was his priority. But the obligation to help patients in distress had to be balanced with protecting funding for drugs for as many people as possible in the health services.

He called on the TDs not to treat the HSE as a “cold body” that did not want to grant funding for the drug because everyone wanted the drug to be approved.

But he said “we have to ensure that in the dealings the State has with pharmaceutical and drugs companies that there is a fair price on offer”.

He added that they should have a process “that doesn’t allow children to be used as a way of getting prices agreed”, through their trauma and their stories.