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People with cystic fibrosis may face a stark choice as the cost of living soars

This piece is part of a series of blog posts by members of the Inequalities in Health Alliance, highlighting the breadth of health inequalities that exist throughout society. #EverythingAffectsHealth 

The rising cost of living combined with the financial burden of living with a lifelong condition is an increasing worry for many people with cystic fibrosis and presents a real challenge to maintain their physical health and mental wellbeing, writes Lynsey Beswick, senior public affairs and advocacy manager at the Cystic Fibrosis Trust.  

As people with cystic fibrosis (CF) face steep rises in their cost of living, the Cystic Fibrosis Trust recently launched a survey to enable us to better understand the cost of CF. Early data show that, of the 1,151 people who took our survey, 87% indicate that they are worried about the cost of living, and 35% say that they worry about money daily.  

CF is a genetic condition that affects the lungs and digestive system, and requires a huge daily treatment burden, hospital appointments and inpatient care. Most people with CF have pancreatic insufficiency, which means that their pancreas struggles to digest essential fat and nutrients from food. As a result, people with CF need to consume additional calories and take enzymes with food to help maintain a healthy weight.  

The Cystic Fibrosis Trust is increasingly concerned about the impact that the rising cost of living will have on people with CF, who may be forced to make difficult choices between maintaining an appropriate diet and other additional CF-related costs, such as parking fees at hospital appointments or paying for essential medicines.  

For many, prescribed supplement drinks can help provide an additional calorie intake. However, CF is one of the few life-threatening, chronic conditions where around 2,500 adults with CF do not qualify for free prescriptions in England.  

When the prescription charge exemption list was produced in 1968, children with CF weren’t expected to live to adulthood – so CF wasn’t included. The Cystic Fibrosis Trust believes that the list is outdated and unfair, with a survey by the trust showing that 95% of respondents agree that prescriptions should be free for people with CF. 

Under the current system, many people with CF will continue to incur an ongoing lifelong financial burden to access their daily treatments. However, we believe this additional financial burden for people with CF is unfair, particularly at a time when many are struggling financially.  

We believe it is vital that everyone with CF should have access to free prescriptions, regardless of where they live in the UK. We are calling on the government to review the prescription charge exemption list and to acknowledge the financial challenges faced by people with long-term conditions like CF.