Southampton charity calls for urgent action over shortage of life-saving drug
Their chairman warns it could contribute to increased deaths if not tackled quickly
A cancer charity based at Southampton General Hospital 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 Health Secretary Wes Streeting, 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.
Mr Pearce has warned that, unless action is taken quickly to implement interim solutions, the issue could 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.
A spokesman for PLANETS said:
"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 said:
"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 importation of Pert from unlicensed sources, but Mr Pearce said there is no evidence that patients in the community are getting access to these supplies.
He 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."
A Department of Health and Social Care spokeswoman said: "We have inherited ongoing global supply problems that continue to impact the availability of medicines, including Creon.
"We know how distressing this can be for patients and we are working closely with industry, the NHS and others in the supply chain to mitigate the risk to patients and make sure alternative products are available until their usual treatments are back in stock."