‘Shocking’: cystic fibrosis patients should not have to pay for drugs that keep them alive, says MP

Read More

MPs will be asked this week to end the “shocking” practice of making cystic fibrosis patients in England pay prescription charges for the drugs that they need to stay alive. The condition is the nation’s most common inherited, life-threatening disease and affects more than 7,000 people.

Prescription charges, first introduced in 1952, were abolished in 1965; then, when they were reintroduced in 1968, exemptions were made for those suffering from long-lasting ailments such as cancers, diabetes and epilepsy. But children with cystic fibrosis were not expected to live to adulthood and so the condition was not exempted.

As a result of new medicines and the creation of special physiotherapy regimes, cystic fibrosis patients now live well into their 40s.

“Medicine and society have moved on, so should the exemption list to reflect modern-day experience,” said Paul Maynard, the Conservative MP for Blackpool North and Cleveleys, who will call for an end to prescription charges for the disease at a special Commons debate on the illness this week. “As someone who has a long-term medical condition – epilepsy – it has always amazed me that adults with cystic fibrosis have to pay for their prescriptions whilst I do not.”

Cystic fibrosis is triggered when a person inherits a mutated gene from each parent. This affects the behaviour of chloride ions inside the body, which become disrupted and impair the ability to produce healthy digestive juices, sweat and mucus. Bodily fluids become thick, sticky and clog up lungs, digestive tracts and other organs. Sometimes enzymes from the pancreas cannot reach the stomach, so patients cannot digest food.

“Patients have to take a significant number of drugs every day just to stay alive and also need hours of physiotherapy and exercise,” said Becky Kilgariff, head of information and support at the Cystic Fibrosis Trust. Often patients find it very difficult to maintain jobs and some live with extremely strained finances, she said.

Recent cases highlighted by the trust include that of Danielle, who has struggled with the sudden recent increase in her energy bills and was having to decide between putting on her heating or buying food.

In another case, a patient called Tom required intravenous antibiotics that could only be given in hospital. This disrupted his work and affected his income, threatening his ability to pay for food and heating for his young family.

In both cases, the trust was able to help through its winter hardship support fund but its staff argue it is deeply unfair that – on top of the problems affecting patients – they still have to pay prescription charges for the drugs they need to stay alive. In some cases, patients are able to buy an annual pre-payment certificate costing ?108, but financial vulnerability still means that for many the cost poses a significant burden on their day-to-day living.

“It is shocking that people who have a lifelong and life-limiting condition still have to pay for the drugs they need every day due to rules that were drawn up when people with cystic fibrosis weren’t expected to live beyond childhood,” added David Ramsden, the trust’s chief executive.

“We are seeing how people in our community are facing tough economic choices as the cost of living increases, and it is the time to make this change.”

Crucially, people in Wales, Scotland and Northern Ireland do not have to pay prescription charges and campaigners say it is time the government stopped penalising people in England, especially those with cystic fibrosis and other long-term ailments that are not on an outdated exemption list.