The decision of the HSE not to reimburse the only approved drug for a rare genetic condition has been labelled as a “manufactured delay” by a Sinn Féin TD.
On February 25th, the HSE confirmed it would not reimburse Spinraza, a drug known to help treat those living with Spinal Muscular Atrophy (SMA). The condition is a life-limiting and debilitating disease that results in progressive muscle weakness and loss of movement.
Sinn Féin’s Spokesperson on Disability Rights and Older People Caoimhghín Ó’Caoláin, said that “leaving groups of young children behind is unforgivable.”
“I am not convinced from the responses that I have received from the Minister and Taoiseach on the floor of the Dáil that those who are representing us as a state are approaching the matter with a ‘can-do’ point of view. It appears to me that they are kicking the can down the road,” O’Caoláin told The College View.
In a written letter, the HSE stated Spinraza would cost over €20 million per patient over a five year period €600,000 for the first year followed by €380,000 per year after that.
Biogen, the company that produces the drug, said that these figures are out of date.
O’Caoláin added that “we are only one of two remaining EU member states who have not yet recognised Spinraza as a drug for reimbursement. It’s not something that Ireland should be proud of.”
SMA has four different types: ‘1, 2, 3 and 4’, which are based on the age of onset and the level of movement and functionality achieved.
Type 1 is the most severe form and makes up around 60 per cent of SMA cases found in children. Up to 95 per cent of children living with Type 1 who do not receive treatment die before two years of age.
On February 28, SMA Ireland, a patient organisation representing people living with the condition, held a protest outside Leinster House to call on the HSE to revert its decision.
“In the next two years, there is definitely going to be someone born with SMA Type 1 in Ireland. As things are now, that person is going to die and it is completely unnecessary,” said Anton Mannering, Interim Chairperson of SMA Ireland.
“Essentially, I think those figures were released (by the HSE) in order to create the impression that this was a legitimate decision,” said Mannering, “to change the press narrative away from the fact that they have failed to reimburse the drug.”
Mannering finished by saying, “The HSE has an opportunity to put this right. The government has the opportunity to influence and have public oversight. If we have to go to the Dáil again, we will. We will do whatever is necessary to ensure that our children and all people with SMA are treated.”
Image Credit: SMA Ireland