A local TD is accusing the HSE of being “petty” and “blatantly unfair” regarding the restriction of the approval of the use of the drug Spinraza to people solely under 18 years.
The drug is the only medication on the market to treat spinal muscular atrophy, a rare muscle-wasting condition.
While welcoming the provision of this medication for young people, Deputy Éamon Ó’ Cuív stated he could not understand why it was not being made available to those over 18 years of age.
“These people have the same right to life as everybody else and should be provided with this life saving drug just as those under 18 have been. The numbers involved are small. The number of people under 18 years of age who are benefiting from the drug is estimated at 18 and the number of adults that would potentially benefit if the drug was available without age restriction is another 18.”
He stated the HSE outlined that the annual cost of the drug over the next five years would be €4 million for under 18s.
“It is unlikely that all the 18 plus adults that have been excluded thus far would qualify for an access programme with no age limit. It therefore can be estimated that the extra money needed for universal coverage over the same period would be less than €3m a year. In the context of what the State spends on drugs and other savings that could be made, the amount of money is very small.
“I believe that the HSE’s current position is petty and blatantly unfair and unnecessary on cost grounds. I now call on the Minister to intervene with the HSE and instruct them to make Spinraza available without health restriction.”
