Seanad debates

Wednesday, 5 December 2018

10:30 am

Photo of Keith SwanickKeith Swanick (Fianna Fail) | Oireachtas source

I refer to the topic of Spinraza again. I have spoken about this in the past, as has my colleague, Senator Conway-Walsh. Representatives of the spinal muscular atrophy, SMA, patient group met the newly formed rare diseases review committee on 8 November. They presented for 40 minutes on what life is like with SMA, the disease burden of SMA, and the perceived impact of treatment with Spinraza. The patient group was happy with the committee, which comprised a good mix of independent experts, including treating consultants and experts on patients' concerns. It was also evident, however, that the committee would not make a statement, as it needed to further consider proposed suitable treatment guidelines and access through a managed access programme. The patient group believes that this has since been completed and that the statement from the review committee will be accessible to the drugs group in December. I have been contacted by the parents of an affected child. They believe that the group meeting is scheduled for 11 December. Parents want to be assured that the matter is being considered at the first available opportunity, which is the 11 December meeting, and that it will not be kicked out until January. It is only fair that families have a decision before Christmas. I would appreciate if the Deputy Leader could give me an update on that.

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