Manea family are calling for local MP Steve Barclay's support over life-prolonging Cystic Fibrosis drugs
A Fenland family have welcomed news of a Parliamentary debate on making life-prolonging Cystic Fibrosis drugs available on the NHS, but now want local MPs to get behind the call.
Toddler Walter Olney, from Manea, may be too young for the drug, Orkambi, but he is fast becoming the poster boy of the campaign and his mum Leanne has become a tireless campaigner for the cause to “safeguard his future”.
Luckily Walter, who is a delightfully happy 16 months old, has had just one serious lung infection, but just one major illness could be just around the corner and could affect his lungs permanently because he has Cystic Fibrosis, a debilitating and often life-limiting genetic condition.
The Orkambi drugs, produced by Vertex could enable Walter to live a full life, which is why Leanne and families like hers across the country are fighting so hard to get them available on the NHS.
Leanne pushed an online petition calling for a debate in parliament and last month it hit the magic 100,000 signatures needed to make it happen.
She said: “We now have a date for theParliamentary debate of June 10 so now we are trying to gain support from our local MPs and gain some reassurance that they will attend the debate. I have emailed our MP Steve Barclay but it is unclear whether he will attend.
“The response I had was from his assistant and said: ‘Mr Barclay is very aware of the importance of Orkambi and the urgency of its deployment. This must be achieved in a way that protects the wider interests of the NHS from unreasonable and disproportionate pricing. The Government continues to make its case with the firm responsible for this drug.
“In respect of the petition specifically, members of the Government do not, by convention, formally support petitions of Parliament, as doing so is likely to breach the Ministerial Code’s rules on collective responsibility. Mr Barclay remains keen however to see access to Orkambi achieved as soon as possible.
“We want as many MPs as possible to attend this debate and so we have written explaining the case. Currently, 95 per cent of CF patients only have access to medications which relieve symptoms, without treating the cause. Vertex drugs actually treat the genetic defect which causes the disease.
“Much of the immediate burden on the NHS is lifted because of drastically reduced hospitalisation and other interventions. It would be great if local people could support us and write to Mr Barclay urging him to be there on June 10.
More by this authorSarah Cliss