'Somebody is going to die untreated in Ireland': Families protest for Spinraza drug to be made available

Cillian Mearns, 7, and his father Paul Mearns both from Mayo with protesters during a rally at Leinster House. Picture: Gareth Chaney Collins

Will a child have to die before others get a potentially life-changing therapy?

That was a question a parent of a boy with a rare genetic condition asked politicians.

Anton Mannering from SMA Ireland was with a number of families who pleaded with politicians to make Spinraza available for around 25 children with the muscle-wasting disease, spinal muscular atrophy.

The HSE said it was not able to reach an agreement with the manufacturer of Spinraza – Biogen, “at a price that is viable”.

It said the medication would cost €20m over five years, or €600,000 per patient for the first year, and €380,000 in subsequent years.

However, Mr Mannering claimed the overall cost, based on around 70 adults and children with SMA, would be somewhere in the region of €3m.

“What are you going to say when we are back here next year after somebody has died,” he asked politicians who attended a presentation by families in Leinster House.

Because it is an absolute certainty that is going to happen. Somebody is going to die untreated in Ireland - it's unnecessary and it's cruel.

Rebecca Bulman, from Youghal, Co Cork is one of the parents who pleaded with politicians to fund Spinraza so her son's life will not be cut short.

Harry, who is just five years old, has SMA and Rebecca said he is only expected to live until his late teens or early 20s.

“Spinraza would greatly benefit, not only Harry's life but the lives of his entire family,” said Rebecca.

The tearful mother said she did not want to watch her son waste away and die when there was a life-saving treatment available, “I beg you not to allow this go on any longer,” she said.

A number of SMA families marched to the Dáil to present a petition with almost 100,000 signatures asking the Government to fund Spinraza for their loved ones.

Fianna Fáil leader Micheál Martin said it was a very sad that families had to give personal testimony on how Spinraza would change their lives.

“The courage that you have shown is amazing and I think it is just a very poor reflection on our system that it takes this type of presentation before our system can respond properly and appropriately to your situation,” said Mr Martin.

If 25 other countries in Europe could provide access to Spinraza, Ireland should be able to do the same, he said.

Mr Martin said his party colleague and primary care spokesperson, John Brassil, had been told by Biogen that it could make the drug available for less than €10m over the next two and a half years, together with an offer of €90m in savings on three bio-similar products over the same timeframe.

Chairman of the health committee, Dr Michael Harty, said there is a moral and ethical obligation on pharmaceutical companies to make the drugs available at a reasonable price.

Dr Michael Harty

A statement issued on behalf of Biogen said the Spinraza pricing proposal submitted to the HSE was in line with what other European countries had approved.

It pointed out that Spinraza was approved for reimbursement in 25 other European countries, including Scotland.

Also, all countries involved in the BeNeLuxA initiative, of which Ireland is a part of, have been granted approval of reimbursement for Spinraza – apart from Ireland.

“Biogen is genuinely surprised by this statement from the HSE. The figures referenced are at least six months out of date,” the drug company stated.

It had provided the HSE with a significant pricing proposal – absolutely in line with the final price negotiated in countries aligned with Ireland in the BeNeLuxA initiative, which had each decided to reimburse Spinraza.

Biogen also submitted a pricing for its biosimilars portfolio that would make significant savings to the health budget and substantially offset the cost of Nusinersen, marketed as Spinraza.

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