Schoolgirls’ joy at miracle Easter gift
HSE finally agrees to pay for life-changing drug
tem and require treatment with a €400,000-a-year drug called Vimizim.
They have been without the drug following a dispute over cost – but they and their families are overjoyed that the HSE is now agreeing to pay for it.
‘It is the most amazing news,’ said Grace’s mum Barbara Frow, whose daughter Grace stopped receiving Vimizim last month.
Grace, from Leitrim and Cezy, from Kilkenny, have Morquio, a form of Mucopolysaccharide disease (MPS) which causes lifelong problems, including heart disease, skeletal abnormalities, vision and hearing loss and respiratory issues.
Vimizim is the only medicine in the world to treat the condition, replacing the enzyme that their body is missing.
A number of requests from the pharmaceutical company Biomarin for it to be reimbursed were turned down by the HSE, and last year, the company said it could no longer provide it free to the girls.
Grace and Cezy initially received it more than five years ago, as part of the clinical trials.
After that, BioMarin kept providing it to them on compassionate grounds.
On Thursday, the families were told by their medical team in Temple Street that it had been approved.
Cezy’s mum Elena said: ‘We were so delighted to get the good news and we are very happy for Cezy and for Grace to be back on track with Vimizim.
‘It was a very stressful situations for us as a family.
‘Cezy was without medicine for almost two months. We can’t believe
Pharma giant had provided it for free
we’ve received the most amazing news for us.
‘It’s even better than the Easter Bunny! The HSE phoned Temple Street to finally, in response to the fourth application by Biomarin, give us a “yes” for Vimizim funding by the HSE under a managed access scheme,’ she said.
‘We’re extremely thankful to the HSE for approving Vimizim for Grace and Cezy.
‘The relief hasn’t even sunk in yet; it’s like a dream. It’s all we’ve been able to think of since August last.’
And Barbara said: ‘We can finally get back to some kind of normal life now. Grace has the chance of a healthy life again.
‘Grace is over the moon with joy now she’s got her meds back and even the needles again haven’t fazed her. She’s planning a bit of a party when school’s back.’
She said that throughout their fight for continued access that, ‘Grace has always been our main driving force’.
It was originally reported that Vimizim cost around €400,000 per adult and it is not known what the final price agreed by the HSE and Biomarin is.
In a statement, the HSE said that late last year non-approval was “on the basis of cost’.
A spokeswoman confirmed that it has now been approved as: ‘Following negotiations over the past six months, the manufacturer has provided a revised offer that involves a significant benefit to the State, and has reached a threshold that allowed approval by the HSE Drugs Committee.’
The HSE said, ‘finalisation of contractual terms is under way today’, and it is expected that access will start shortly after Easter.
On its Facebook page, the Irish MPS society said: ‘After a long 12 months of campaigning and lobbying our TDs and Senators, we are delighted to announce that all our hard work has paid off.
‘On Thursday 29th March 2018, the HSE said Yes to Vimizim. We wish to thank everyone who has supported us in any way.’ TWO mothers have spoken of their joy after the HSE approved a life-changing drug that will help their children battle a rare condition.
Grace McInytre, 10, and Cezy Fosca, 12, both suffer from Morquio – a syndrome which affects the skeletal sys-