Newcastle under Lyme MP Paul Farrelly is helping to step up the campaign to secure continued medical treatment for a young schoolgirl with a rare genetic disorder.
Tia Copsey, aged 10, is one of only a handful of children throughout the country suffering from Morquio’s Syndrome, a condition which has severely restricted her growth and caused her multiple other medical problems.
For the last six years, Tia has been part of clinical trials for a drug known commercially as Vimizim, which has significantly improved her quality of life and general health.
Since the trials ended, the drug’s manufacturers have continued to compassionately supply Vimizim – which costs around £200,000 a year for a single patient – for Tia and other children who it has been tested on.
But with no decision yet forthcoming on whether the NHS will fund the drug, and ongoing delays on the part of NHS England in formulating a proper process to prioritise and commission new treatments, the drug company – BioMarin – is now set to cease its compassionate funding of Vimizim from early May.
Tia’s family contacted Paul last month (February), urging him to help in their fight for Tia to continue receiving her weekly injections of Vimizim.
He has already written to NHS England to press for urgent discussions with BioMarin on the future supply of the drug, and for an early decision on a process for decision-making within specialised commissioning.
Now, Paul has collected letters from scores of Tia’s friends and classmates at Hassell County Primary School, which he will forward to Health Minister Jeremy Hunt and NHS England in support of the campaign.
He visited the school in Barracks Road, Newcastle, to meet Tia and her fellow pupils, and to hear about how Vimizin had enabled her to join in with activities which her illness would otherwise have excluded her from.
“It is quite heartbreaking to read the children’s letters and to realise how much they care about Tia’s health and well-being,” said Paul.
“They don’t necessarily understand all the whys and wherefores of how the drugs industry works, or the factors involved in the funding of treatments – but they do know that they simply want the best medication available for Tia to continue, and that happens to be Vimizim.
“I will be ensuring that my voice is added to theirs in doing all we can to fight for the continued treatment that has made such a dramatic and life-enhancing difference to Tia.”
Paul is pictured with Morquio’s Syndrome sufferer Tia Copsey (second from right) at Hassell County Primary School, receiving pupils’ campaign letters from the school’s Head Boy Thomas Kenny and Head Girl Lucy Williams, both aged 10.