'We are failing these children spectacularly': Parents call for access to Spinraza as row over 'exorbitant' cost rumbles on
PARENTS OF CHILDREN with a rare genetic condition have called for negotiations between the HSE and a pharmaceutical company over access to a drug to be sped up.The organisation said the medication would cost more than €20 million over a five-year period – €600,000 per patient for the first year and €380,000 per patient per year thereafter.
Twenty-five of the 28 countries in the European Union have granted access to the medication, except Ireland, the UK and Estonia. Children with Spinraza and their families marching towards Leinster House. pic.twitter.com/XODrWXkq7DIn December 2017, the NCPE did not recommend the reimbursement of Spinraza as it was not deemed “cost-effective”. Its estimated the cost at that time was €37.88 million over five years.
While the data we have so far is extremely compelling, there are only so many years of data available and limited comparators, which makes determining cost-effectiveness very difficult. “In more specialised reimbursement methodologies, such as what is now available in Scotland, these kinds of factors are considered.”
I would argue that it is not the assessment process that should be “urgently reformed” but the unrealistic pricing strategies being practiced by the pharmaceutical industry. There is a very clear way to get drugs reimbursed in Ireland and that is to price them fairly. Barry said we often hear the industry talk about pricing but “rarely about value”.
Last month Barry told the Sunday Business Post the HSE had already “almost exhausted” the available funding for new drugs for the whole of 2019.About one in 11,000 babies are affected by SMA – a debilitating disease that causes progressive muscle weakness and loss of movement due to muscle wasting. Speaking to TheJournal.ie, Fiona said waiting for a decision while negotiations go on behind the scenes is “heartbreaking”.“The details are up to Biogen and the NCPE to hammer out. Our lives are full with trying to contain this disease and keep out children pain-free.”
“It’s terrible to have to put our children through that – children in wheelchairs outside Leinster House, literally begging for their lives.”Sam celebrated his ninth birthday last Wednesday. Fiona said her son is “the same as any other kid” and “was delighted with himself” on the day. However, he is aware of what is going on.
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