Fund the medicine
Vera Twomey has fought a well documented battle to gain access to a life changing cannabinoid based medicine for her daughter Ava Barry. She now faces another battle in order for her daughter to continue using this same medicine. The reason. The HSE are refusing to fund it under the Long term illness scheme. Not because of medical reasons but purely for bureaucratic reasons.
Furthermore the HSE are now trying to force Ava Barry’s family to use another product sourced in the Czech Republic which does not have the support of either of the two consultants working with the child. Worse still is the fact that the family would not get the equivalent medical support in the Czech Republic that they are currently receiving in The Hague.
The HSE are telling us that Market authorisation is the reason for this issue now arising. They say that due to this they cannot fund the medicine under the Long Term Illness scheme. However it is clear to anyone that if the state wished to fund the medicine under another mechanism then they could. We are talking about €1600 per month. A drop in the ocean of HSE funds.
Vera Twomey and her family have climbed a mountain in order to get access to a medicine which has improved their daughters life above and beyond all expectations. Having climbed this mountain it would be farcical and potentially tragic if all this progress was halted because a government bean counter couldn’t work out how to get few extra beans out of the jar.
Vera Twomey accompanied by Luke ‘Ming’ Flanagan MEP and Gino Kenny TD will give a press conference on this Friday 23 March 2018 at 11am in Buswells Hotel in Dublin.