Sinn Féin Senator for Mayo Rose Conway-Walsh has again raised concerns with Minister Harris about the agonising delays in administering Sprinraza for SMA patient.
We now have a situation in Mayo when one child, Grace O’Malley from Hollymount, continues to be denied the treatment which was approved back in June. This is not acceptable.
Senator Conway-Walsh said:
“Minister Simon Harris has assured me that the HSE is now in discussions with the three hospitals involved; Crumlin, Temple Street and Tallaght, with regard to arranging a schedule so that the administration of Spinraza can be performed for patients.
“However, it appears that the resources are not being made available for some of the children, including Grace. This is a inhumane situation I will not tolerate.
“Grace and her family were to the forefront of the long but successful campaign to have Sprinraza approved. Now, they are once again thrown into despair. Minister Harris must ensure this situation is rectified without further delay.”
