Grace’s saving error
HSE to honour its mistaken approval of drug
THE HSE has said an ‘administrative mistake’ was made when an application for an expensive drug to be given to a nine-year-old girl with an extremely rare condition was approved.
Last month, the family of Grace Cogan, from Co. Monaghan, received the news that the HSE had approved their request to access the drug Vimizim under the Treatment Abroad Scheme (TAS).
The drug costs an estimated €400,000 a year for an adult and is an enzyme-replacement therapy for the condition Morquio, an inherited metabolic disease.
Grace’s mother Gráinne said at the time: ‘We are over the moon.’
Now it has emerged that the approval to provide the drug under the TAS was given ‘in error’.
The HSE would not comment on individual cases but did say: ‘In recent weeks, in relation to one application for a non-approved drug, authorisation was given in error by the TAS for access to that drug in another jurisdiction.
It added, however, that it would honour the approval.
‘Given that the decision has already been communicated to the family and a reasonable expectation of access had been raised, the HSE has agreed to honour the decision of the TAS to this one applicant on a goodwill basis.
‘The HSE has met with the family concerned and apologised for any upset this mistaken authorisation may have caused.’
Grainne said: ‘To me, this is better than winning any lottery anywhere.’