Cancer charity urges government action on Creon shortage

A leading cancer charity has called on the government to intervene urgently over the shortage of a drug that can prevent life-threatening digestive problems in thousands of people with a range of medical conditions.

Neil Pearce, chairman of PLANETS Cancer Charity and a former pancreatic cancer surgeon, has written to Wes Streeting, Secretary of State for Health and Social Care, outlining his ‘deep concerns’ about the lack of pancreatic enzyme replacement therapy (PERT).

The treatment is often referred to as Creon which is the brand name of a commonly used type of the drug.

He has warned that, unless action is taken quickly to implement interim solutions, the issue will lead to excess and avoidable deaths in this patient group from sepsis and diabetic complications.

PLANETS, which helps patients with pancreatic, liver, colorectal, abdominal (oesophageal and gastric) and neuroendocrine (NET) cancers, estimates around 20,000 people in the UK are affected by the problem.

PERT is prescribed for patients with pancreatic deficiencies caused by a variety of conditions including pancreatic cancer, pancreatic surgery, cystic fibrosis, chronic pancreatitis and neuroendocrine tumours.

Patients who rely on the medication suffer severe abdominal cramps and a particularly unpleasant form of diarrhoea when they are unable to obtain it – typically taking a handful of the tablets with every meal to avoid these symptoms.

Lack of adequate PERT leads to malnutrition, with rapid weight loss, fatigue, vitamin and mineral deficiency, susceptibility to infections and, as many of these patients are diabetic, their blood sugars become increasingly difficult to control.

The shortage has been caused by a number of factors including supply chain issues across Europe exacerbated by leaving the European Union, the lack of a UK manufacturer and a worldwide increase in demand due to a rise in the number of patients living with the conditions related to it.

In addition, current NHS prescribing rules prevent pharmacists from substituting a like-for-like product when a specific brand is specified on the prescription and NHS procurement rules exclude viable supplies from ‘unlicensed’ sources such as US manufacturers.

Mr Pearce explained:

“We are deeply concerned that the patients we represent remain at significant risk of avoidable, life-threatening complications due to the shortage of PERT despite a National Patient Safety Agency (NPSA) safety alert being released.

“I am distressed by the stories I am hearing on a daily basis, including those of palliative pancreatic cancer patients suffering avoidable pain and indignity and some of my own patients from 20 years ago who are now unable to leave the house because of the severity of their symptoms.

“It is evident that the good intentions of the safety alert and the advice issued alongside it are not making a difference to patients in the community whose lives are now dominated by the search for this essential treatment.”

The NPSA safety alert advises that procurement rules are being relaxed to allow the import of PERT from unlicensed sources, but Mr Pearce said there was no evidence that patients in the community were getting access to these supplies.

Mr Pearce added:

“Every day we hear stories of patients scouring the country for pharmacists with a supply in stock and travelling as much as 100 miles to get a month’s supply or, in some cases, just enough capsules of this medication to last the weekend.

“Patients face a Catch-22 situation where, once they have submitted their prescription to a particular pharmacy if the medication is not available they receive a credit note for when stocks are available, which in some cases is months, not days.

“Even if they can find a pharmacy with stock, they can’t access it without a fresh prescription from the GP.

“The majority of patients in the community do not appear to have received the official advice to patients and are constantly contacting their nurse specialists, hospital dieticians and support charities for advice.

“The advice on how to eke out supplies and modify diet is helpful for those with mild symptoms but is inadequate for the many patients with already complex diets and severe enzyme insufficiency.

“Patients in the worst category are advised to ‘try not to worry’ because things might be better in 2025, which seems woefully inadequate.”

Mr Pearce said the latest advice given to GPs advises them to contact their local pharmacies to see what products are in stock and prescribe the particular formulation accordingly – but that the constitution of the treatment makes it difficult to achieve that.

He said:

“Unfortunately there is not one standard constitution for PERT, which comprises several different enzymes in different quantities and proportions, so different brands are not always directly comparable.

“Given that it is taking patients several days to track down a pharmacy with supplies, it seems unlikely that any GP outside of a dispensing practice would have time to do the same.”

Mr Pearce has proposed Mr Streeting and the government intervene to require pharmacy chains and suppliers to purchase sufficient wholesale stocks to supply the projected national need and distribute them equally to pharmacies across the UK.

He has also urged the relaxation of rules for pharmacists to allow them to substitute the closest available equivalent PERT product if the exact one prescribed is not available but an alternative is in stock.

He concluded:

“PERT is a very safe product with no foreseeable consequences from overdose. In the long term, consideration should be given to developing a UK-based supply chain but these steps will provide an adequate interim solution.”

Mr Pearce has also contacted the chief coroner and national lead medical examiner due to specific concerns about the potential for avoidable and hastened deaths due to sepsis, poor diabetic control and malnutrition in pancreatic cancer patients.