MP welcomes NHS decision to fund life-saving treatment for Tia

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24 Nov 2015
Newcastle’s Labour MP Paul Farrelly has welcomed the announcement by NHS England that people suffering from the rare genetic disorder, Morquio Syndrome, will now be able to access the drug that treats the tragically debilitating disease.

Having fought with campaigners, urging the government to grant funding, Mr Farrelly is delighted that this decision will finally bring light at the end of the tunnel for his constituent, Tia Copsey, aged 10 from Newcastle. 

‘This is great news at long last for Tia, her family and everyone else who suffers from this sadly debilitating condition and I am glad the Government and NHS have finally listened to the campaign,’ he said.

Tia is one of around 100 people, mostly young, in the country suffering from the disease, which severely restricts growth and causes many other medical problems.  

For the last six years, Tia – who goes to Hassell Primary School in Newcastle - has taken part in clinical trials for the drug, known commercially as Vimizim,  that has radically enhanced her quality of life and helped her cope with the symptoms.

A decision on the funding of Vimizim - first licensed in April, 2014 and now approved for use in over 20 European countries - was originally expected in April of this year, but continuous delays led to concerns over the future for Morquio sufferers in the UK.

Treatment was suspended earlier this year when the manufacturers, BioMarin Pharma, stopped supplying the highly expensive drug ‘pro bono’ in the face of NHS prevarication, resulting in a severe deterioration in Tia’s condition, including increased lethargy and pain.

NHS England’s price-cutting deal, announced yesterday, will bring much relief and finally promise a higher quality of life. For the moment, however, it only extends over five years - with further trials throughout - and the campaign for lifetime treatment will continue.

‘This is hopefully just a first step to help save lives and we all want the treatment to carry on beyond five years. What we, and all the campaigners, are now doing is to make sure Tia and everyone get Vimizim quickly, so it really is a Christmas present come early.’

‘What we certainly don’t want is any disappointment because of NHS bureaucracy getting in the way and for Tia and all Morquio patients to receive the treatment again without delay.’ 

‘In the summer, Tia went to 10 Downing Street and handed in a letter to the Prime Minister - and all her school friends signed, too. I and colleagues here, cross-party at Westminster, will continue to help the campaigners and make sure we get more good news in the future.’