Campaign update: Equal access to treatments for SMA adults
Muscular Dystrophy Ireland (MDI) and Spinal Muscular Atrophy (SMA) would like to thank everyone that has supported our #SMATreatmentsForAll campaign so far. Thanks to your efforts, we have seen significant engagement from your local TDs and senators, as well as Health Department officials and industry professionals. On Tuesday, 27th May at a briefing in Leinster House, SMA Ireland and MDI issued an urgent call for the arbitrary age restriction currently preventing approximately twenty adults in Ireland from getting access to life-saving SMA treatments.
There is still work to be done, and we are asking for further support in keeping the pressure on your representatives until every adult living with SMA has equal access to these life-changing treatments. Please, visit the link and ask your TD for their continued support in overturning this restriction.
Since 2019, there have been three SMA treatments available in Ireland (Spinraza, Zolgensma, and more recently, Risdiplam). The treatments were made available to those living with SMA under the age of 18 at the time of approval. This cohort continue to receive treatment. Meanwhile, those over 18 at the time of approval were denied access and continue to be excluded from treatment.
In her address to TDs, senators, healthcare professionals and industry professionals at the audio-visual room in Leinster House, Dr Aoife McNicholl, 30, Assistant Professor of Psychology at DCU, described her experience as an adult living with SMA. Currently, Dr McNicholl is impacted by the HSE restriction and described it as a “critical barrier” impeding her full and active life.
“I have a boyfriend, a career, and represented my country in wheelchair soccer this weekend. Every day that I go without access to treatment means further deterioration and decline. I know that I will not walk, but I am not looking for a silver bullet. I am looking for a silver lining,” said Dr McNicholl.
The three treatments are available across Europe, the UK and Australia, with ample data to prove the positive impact the treatments have on quality of life and outcomes for adults living with SMA.
Dr McNicholl added: “In Ireland, we are lagging behind other advanced countries. Lifting this restriction would be cost-effective, reducing the risk of future medical interventions and hospital stays.”
Also speaking at the briefing was Professor Orla Hardiman, Professor of Neurology at Trinity College Dublin and Consultant Neurologist at Beaumont Hospital.
“Children born today with SMA can be treated. The current situation is unequitable, unfair and unacceptable, and could be changed with the stroke of a pen.”
In his address at the briefing event, Senator Tom Clonan described the restriction as “casual cruelty” and in “contravention of lawful requirements of the disability act”.
Many TDs and representatives present at the event have raised parliamentary questions, proving that the campaign has so far been successful in raising awareness about this medical inequality. However, we are asking for your continued support as we cannot stop until we have ensured that all adults living with SMA have access to life-changing treatments. Please, use your voice by emailing your local TDs on bit.ly/4mpYWnk , urging their continued action until there are #SMATreatmentsForAll.