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A total of 43% of people with cystic fibrosis (CF) said that supply shortages of pancreatic enzyme replacement therapies (PERT) have had either a ‘significant’ or ‘severe’ impact on their health and wellbeing, results from a survey carried out by the Cystic Fibrosis Trust have revealed.
The survey of 747 people with CF and their carers and families, published on 12 November 2024, reported that 80% of patients had experienced symptoms of stress and anxiety resulting from shortages in supply, while 8% said that they had completely run out of their medicine.
PERT is a medicine taken daily to help digestion by replacing enzymes produced in the pancreas. It helps break down food, absorb nutrients and avoid bowel symptoms in people with pancreatic insufficiencies, which are commonly observed in pancreatitis, pancreatic cancer and CF.
In the UK, there are three PERT products available on the NHS: Creon (Viatris), Nutrizym 22 (Zentiva) and Pancrex V (Essential Pharma).
In May 2024, a national patient safety alert published by the government announced supply disruptions for all PERT brands in the country, which is expected to last until 2026.
In the safety alert, pharmacists were told to issue only one month’s supply of PERT at a time owing to the shortages.
More than one-third (37%) of the survey respondents said the PERT shortages have forced them to adjust their diet frequently in the past month, while 20% said they have to skip meals to ration supply.
The results also showed that 20% reported weight loss owing to the shortages — difficulty maintaining a healthy weight is a common symptom of CF because it can increase the body’s energy needs by 150–200%.
The PERT shortage has also resulted in increased travel time, with 21% of respondents spending four or more hours per week trying to find and collect PERT, resulting in higher travel costs.
Commenting on the survey results, David Ramsden, chief executive at Cystic Fibrosis Trust, said: “For people affected by CF, the shortages are a deeply worrying situation. Our survey shows that the shortage of pancreatic enzymes is having a serious impact on the physical and mental health of people with CF.
“It’s been almost a year since these latest supply issues started and concrete, long term solutions are urgently needed — including for the government to establish a medicines shortages taskforce,” he said.
In July 2024, Pancreatic Cancer UK and other representative organisations wrote to Wes Streeting, secretary of state for health and social care, asking for an urgent meeting to discuss “key policy solutions” to address the shortage.
However, the government denied the request in September 2024.
In an announcement published alongside the survey on 12 November 2024, the Cystic Fibrosis Trust called for the UK government to establish a medicines shortages task force with an immediate focus on the PERT shortage, improve communication to people with CF around support measures and access, and to ensure access to specialist psychosocial support caused by the supply issue.
A spokesperson for the Department of Health and Social Care said: “We know how frustrating and distressing medicine supply issues can be for patients, and the pharmacists and clinicians caring for them.
“This government inherited a broken NHS alongside global supply problems that continue to impact the availability of medicines, including Creon, and we are working closely with industry, the NHS manufacturers and other partners in the supply chain to resolve current issues as quickly as possible.”
