'Door not shut' on access to Spinraza says Kilkenny Minister of State

The parents of Kilkenny youngster, Isaac Brennan were informed last week by the HSE that it was not in a position to fund Spinraza, a drug used to treat Spinal Muscular Atrophy.
The HSE said that it would not sanction use of the drug because of the cost involved.

However Minister for State John Paul Phelan has told the Kilkenny People that  the HSE response is that 'the door is not shut on the matter'.

The parents of Isaac Brennan have vowed to continue to fight to get their son access to the medication he desperately needs.
“We received a response from the HSE on Friday last advising that the HSE are not proposing to reimburse Spinraza under the current price offering from the manufacturer Biogen.
“The news has been a massive blow to us and we are absolutely heartbroken but we are not going to take this lying down.
“We will keep battling.
“The formal notice of intention now provides Biogen with a 28 day period to respond to the HSE.
“We are hoping that the HSE and Biogen can work together on this over the next few weeks for the sake of our children’s lives.
“This should not come down to negotiating cost, this is our children's health and quality of life and should be addressed as a priority.”

Minister John Paul Phelan said he has made a number of representations to Health Minister, Simon Harris,on behalf of the children and their families.

"The HSE response indicates that the door is not shut on this matter. There still have to be talks between the HSE and the pharma company.
"I will continue to represent these families and will update them on matters as progress is made," Minister Phelan promised.

Meanwhile Deputy John McGuinness said that the decision was a disgrace and vowed to continue to work with families to ensure that there is access to the medication. 

"It’s a disgrace that the HSE would not put children first. The decision must be challenged. I will assist in the work of the group," he said.

Deputy Bobby Aylward said that the decision was  'deeply disappointing for the families of the affected children, who were desperately hoping for good news'.

"I, along with a number of other TDs, have made a further request to office of the Ceann-Comhairle for time to be set aside for a special debate tomorrow (Wednesday) so that we can communicate our concerns to the Minister. We will be requesting the Minister to instruct the HSE Drugs Group to engage in negotiations with the manufacturer until such time as a resolution can be found.”

The Head of the National Centre for Pharmacoeconomics (NCPE), Professor Michael Barry said he understood that there was probably dismay and disbelief among patients about the Health Service Executive’s decision not to fund the drug, but he said ‘it is not a final no’ and that the ‘door is always open’.
Isaac is forced to use a wheelchair because of SMA. There is medication, Spinraza, which could enable him to walk and extend his life expectancy but it is not currently approved or funded by the HSE.