Skyclarys access for Friedreich’s ataxia
The Deputy seeks access to Skyclarys for Oisín Pollard and other people with Friedreich’s ataxia, criticising prolonged HSE price negotiations. The Minister offers to raise the case with the Health Minister and engage directly.
I raise with the Minister the case of Oisín Pollard. At nine years of age, Oisín was diagnosed with Friedreich's ataxia. For the past 18 years, he has battled on. For most of those 18 years, he was told there was no treatment. Now, for the first time, there is hope. Skyclarys has been rolled out by other EU states with great effect. It is life-changing. However, little progress has been made here. The HSE remains locked into a haggling war over price. For the small number of people suffering with this rare condition, time is precious. It has been nearly two years since Biogen applied to the HSE for reimbursement of this drug. I ask that the Tánaiste, the Taoiseach and the Minister for Health engage with the HSE to ensure that a solution is found so that Oisín and others get the urgent support they need.
Comment on this
I am really sorry to hear about the particular case. Where possible, where there are particular rare conditions, we need to support people insofar as we possibly can, with the HSE working closely with the companies as well. If the Deputy passes on the details of the specific case, if that has not already been done, I will certainly raise it again with the Minister for Health.
Comment on this
It relates to the reimbursement of the money. It has to be done.