People with pancreatic cancer are eating only one meal a day because of an acute shortage of a drug that helps them digest their food.
Patients with cystic fibrosis and pancreatitis are also affected by the widespread scarcity of Creon, a form of pancreatic enzyme replacement therapy (PERT).
People who rely on the drug have also been taking reduced doses to conserve their supplies and travelling more than 30 miles from their home to find it, pharmacists revealed today.
Thousands of people with pancreatic cancer need to take PERT tablets and those hit by the shortage are suffering “distress and frustration”, the charity Pancreatic Cancer UK said.
The difficulties the Creon shortage is causing patients emerged on Monday in a survey of 300 pharmacies undertaken by the National Pharmacy Association. Almost all – 96% – are struggling to get enough of the medication to meet demand.
“As this distressing survey shows, ongoing supply problems with Creon have had a profound effect on the patients who depend on it to survive and lead a normal life”, said Olivier Picard, the chair of the NPA.
“It simply cannot be right that in the 21st-century patients are skipping meals in order to ration their medication.
“Medicine shortages not only cause huge inconvenience but can risk serious patient safety issues, particularly in the case of PERTs, including Creon,” he added.
Pancreatic cancer patients who either do not take a PERT or take too small a dose of it can become too sick to have surgery, which is the only potentially curative treatment for the condition, the NPA explained. They may also be less able to withstand the rigours of having chemotherapy and struggle to manage the symptoms of their condition, which can affect their quality of life.
The Department of Health and Social Care (DHSC) said that the scarcity of Creon in the UK is part of a Europe-wide shortage linked to a lack of the ingredients used to make it and “manufacturing capacity constraints”.
Creon has been in short supply for at least a year. The DHSC last week extended the two serious shortage protocols that have already been in place for it since May last year, covering 10,000 and 25,000 capsule formulations of Creon, until 21 November this year.
The protocols are official notifications of a medication being hard to obtain, which allow pharmacists to give patients a smaller quantity of a drug than they usually receive.
Alfie Bailey-Bearfield, head of influencing and health improvement at Pancreatic Cancer UK, said: “These deeply worrying findings echo the distress and frustration we are hearing from patients and their loved ones across the UK.
“Thousands of people affected by pancreatic cancer rely on taking PERT tablets every time they eat simply to digest their food and absorb nutrients, something most of us take for granted.
“It’s totally unacceptable that they are taking desperate measures which put their health, wellbeing and their eligibility for treatment at risk,” he added.
One pharmacist said the Creon scarcity was the “worst stock shortage” they have ever dealt with.
Pancreatic Cancer UK called on ministers to buy supplies of Creon directly from countries that have a surplus in order to tackle the shortage in Britain.
A DHSC spokesperson said: “We know how frustrating and distressing medicine supply issues can be for patients and the clinicians caring for them.
“The European-wide supply issues with Creon are caused by a limited availability of raw ingredients and manufacturing capacity constraints.
“We are working closely with industry and the NHS to mitigate the impact on patients and resolve the issues as quickly as possible.”
