Chambers calls on Government to stop ignoring the reality of life changing drug Spinraza

Fianna Fáil Deputy for Mayo, Lisa Chambers has called on the Government to do all in its power to
ensure the reimbursement of the drug Spinraza – which has been labelled a life changing drug for
those suffering with the rare disease Spinal Muscular Atrophy (SMA)

Speaking on the matter Deputy Chambers said “25 children in Ireland suffer with SMA and this drug
would transform and extend their lives. Right now the only barrier to providing the drug is cost. Over
20 countries worldwide have approved the drug with Belgium and the Netherlands the most recent.
We need our government to listen to these families, do the right thing and provide this life saving
medicine for these children”

“On June 22 nd  the Minister for Health announced that Ireland would join the Beneluxa initiative; an
alliance aimed at securing affordable and timely access to medicinal products in a range of
countries. The very first task undertaken by this new group was to make Spinraza available in each of
the countries signed up to the initiative, except Ireland,” she said

“I raised the issue of Spinraza with An Taoiseach three times in the Dáil Chamber and each time his
response was less than satisfactory; claiming efficacy issues which is completely false, Spinraza is
clinically effective and has been proven to work and this Government is ignoring that reality,” she
stated.

“The Minister for Health has yet to make contact with the families campaigning for Spinraza, I asked
An Taoiseach on three occasions to instruct his Minister to liaise with the families and he is still yet
to do so, which leaves me to believe that this Government is burying their heads in the sand when it
comes to Spinraza,” she continued

“I submitted a number of Parliamentary questions regarding Spinraza and the negotiations that have
taken place with Biogen (the company that supplies spinraza), in terms of the price that Biogen
offered the Government, the purchases options that have been given to Government and to confirm
whether a decision has been made either way regarding the purchase of the drug and when the
Minister intends to stop leaving these families in limbo and give them a direct answer. Subsequently
my PQ’s were disallowed and I and the families are none the wiser as to what the current situation
with Spinraza is, if any,” she said

“We need our government to listen to these families, do the right thing and provide this life saving
medicine for these children. The Government cannot continue to hide behind bureaucracy and
procedure by failing to make Spinraza available to those who need it,” she concluded.