‘People will die’ warn charity as UK faces major shortage of miracle cancer drug that stops people ‘wasting away’
A MAJOR shortage of a drug that helps people digest food could cost lives, a charity has warned.
Neil Pearce, of PLANETS charity, has written to the Government outlining “deep concerns” about the lack of pancreatic enzyme replacement therapy (PERT).
Patients who rely on the medication can suffer from severe diarrhoea, weight loss, and malnutrition without it.
Paul Elcombe, 62, who takes PERT three times a day to survive previously told the Sun he had cut down his meals to just one per day to make his remaining drugs last.
“Without this medicine, I can’t eat. I’ll waste away and end up dying,” he said.
The drug is given to people like Paul who lack the digestive enzymes to break down food into nutrients the body needs to survive.
This can be caused by several conditions, including pancreatic cancer, pancreatic surgery, cystic fibrosis, chronic pancreatitis and neuroendocrine tumours.
PLANETS clarity helps patients with pancreatic, liver, colorectal, abdominal and neuroendocrine cancers.
It is estimated that about 20,000 people in the UK have been affected by the shortage of PERT.
The treatment is often referred to as Creon, which is the brand name of a commonly used type of drug.
Neil, who is a former pancreatic cancer surgeon, warned that, unless interim solutions were implemented, the issue could lead to “excess and avoidable deaths” from sepsis and diabetic complications.
“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,” explained Neil.
“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,” he added.
He added that patients remained “at significant risk” despite a National Patient Safety Agency (NPSA) safety alert, external.
It advises that procurement rules are being relaxed to allow the importation of PERT from unlicensed sources.
‘REALLY WORRIED’
However, Neil said there was no evidence that patients had access to them and that the charity heard of patients “scouring the country” for pharmacists with a supply in stock.
The Sun previously reported that patients have turned to Facebook in a desperate attempt to get the drug after struggling to get any from the chemist.
Alfie Bailey-Bearfield of Pancreatic Cancer UK, said: “We are really worried about the impact of intermittent shortages of Pancreatic Enzyme Replacement Therapy (PERT).
“PERT is essential for people with pancreatic cancer as insulin is for people with diabetes, and difficulties obtaining an adequate supply can cause distress and anxiety.”
He added: “People with pancreatic cancer rely on this vital medication to digest food, maintain a healthy weight and ultimately, live well, and be well enough to have treatment.
“Not having enough can significantly impact symptom control and people’s daily quality of life.”
A Department of Health and Social Care spokesperson 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.”
If you or a loved one are struggling as a result of the Creon shortage, Pancreatic Cancer UK has a specialist nurse who is experts in pancreatic cancer and can help you through this.
To speak to a nurse, call the charity’s support Line on 0808 801 0707 or email nurse@pancreaticcancer.org.uk”.
What is Creon?
CREON is a type of Pancreatic Enzyme Replacement Therapy (PERT) that replaces enzymes the pancreas would normally make.
The enzymes come in capsules that you take with food.
These help you to digest your food by breaking down carbohydrates, fats and proteins in your food.
Most people with pancreatic cancer will need to take PERT.
People who need PERT will take it for the rest of their life, and the pancreas will not start making the enzymes again.
Source: Pancreatic Cancer UK
MAJOR DRUG SHORTAGES
The latest medicine supply issue suggests medicine shortages in the UK are going from bad to worse.
There have also been ongoing problems with the supply of hormone replacement therapy (HRT) drugs, ADHD medicines, antidepressants and, most recently, insulin.
A new medicines report suggested “critical” drug shortages, are putting Brits health at risk.
Many patients are forced into “pharmacy bingo” and travel from one to the next to try and get their prescription filled.
Janet Morrison, chief executive of Community Pharmacy England, who published the report, said: “The medicine supply challenges being faced by community pharmacies and their patients are beyond critical.
“For some patients, not having access to the medicines they need could lead to very serious consequences, even leaving them needing to visit A&E.
“Pharmacies are doing everything they can to find solutions for all their patients, but are powerless to resolve national and global supply issues.”