Chancellor Jeremy Hunt has been urged to give a compassionate Spring Budget – by finally granting free prescriptions to sufferers with rare genetic diseases like cystic fibrosis.
A year ago the Daily Express and the Cystic Fibrosis Trust handed in a petition at 10 Downing Street, asking the Government to finally make CF sufferers exempt from paying for their medicines.
In 1968 chronic illnesses like diabetes and epilepsy were included in a list of conditions warranting free prescriptions, but many rare genetic diseases like CF missed out – and the list has never been updated since.
Just adding CF would only cost taxpayers £279,000-a-year, less than the price of one house – against the Department for Health and Social Care’s huge £160bn annual budget.
Now a year on from, the CF Trust have written to Mr Hunt asking why nothing has yet been done – urging him to stop financially penalising people born with life-affecting diseases.
In his letter to Mr Hunt David Ramsden, Chief Executive of Cystic Fibrosis Trust, wrote: “I urge the Government to consider the tangible impact your actions can have on the lives of people with CF.
“Your Spring Budget presents a crucial opportunity to rectify the inequity – one way is to allocate funding for the prescription pre-payment certificate to the small group of people with CF who are currently ineligible for exemption.
“This would likely entail an annual expenditure of around £280,000. I implore you to dismantle the barrier of prescription charges for people with CF in England.”
Cystic fibrosis (CF), a life-limiting genetic condition where mucus clogs up your airways, was excluded as back then there was no treatment except antibiotics – and patients’ life expectancy was just 30 years old.
So CF was not added to the list as the disease mainly affected children – with adults life expectancy so low – and children had free prescriptions anyway.
But since 1968 man’s walked on the moon, Britain’s seen 12 new Prime Ministers and new NHS wonder drugs like Kaftrio are adding decades to adult CF sufferers’ lives.
Yet the exemption list still hasn’t been updated to include the genetic condition, which sees sufferers needing dozens of different tablets and pills to stay healthy.
Although there are 10,800 CFers in the UK, the CF Trust claim 2,500 sufferers in England are using disability benefits to pay for prescriptions for essentials like antibiotics, enzyme Creon taken with each meal, protein supplements, vitamins and liver and salt tablets.
CF’s not alone in wanting to be added to the exemption list, with rare genetic condition phenylketonuria (PKU) – where they are unable to eat any protein – also seeing sufferers often get their entire weekly food shopping on prescription.
People with regular prescriptions can make it more affordable by paying for a 12-month Prescription Prepayment Certificate (PPC) but that is still £111.60-a-year – money during the cost-of-living crisis that many don’t have.
Patients in Scotland, Wales and Northern Ireland enjoy free prescriptions – but patients in England do not.
Mr Ramsden, Chief Executive of Cystic Fibrosis Trust, told us: “It’s unacceptable that people with CF are having to prioritise one essential, such as heating, eating, or prescription charges, over another.
“With the cost of living continuing to impact everyone, prescription charges for live saving medicines are a cost people with CF in England should not be having to pay – we need long-term solutions from the Government.
“The exemption list is outdated and needs urgent review. Without action, people with long-term life limiting conditions like CF will continue to be at risk.”
A Department of Health and Social Care spokesperson told the Daily Express: “Around 89 per cent of prescription items are free on the NHS in England.
“Those with specified long-term conditions or on a low income can apply for a range of prescription charge exemptions or additional support through the NHS Low Income Scheme.
“Patients can also buy pre-payment certificates to cover all the prescription items they need for just over £2 per week and we are working with the NHS Business Services Authority to raise awareness of low-cost options to help people save money on their prescription costs.”