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New report shows living with cystic fibrosis comes with annual extra £6.5k price tag

Press release issued: 24 January 2023

At a time of financial strain, a new report out today shows the extra cost of having cystic fibrosis is more than £6,500 a year on average.

This financial burden is made up of both extra spending, including heating, essential but costly dietary needs, attending medical appointments, home medical equipment, and prescription charges, as well as loss of income, which create a 'double hit' to the finances of adults with cystic fibrosis (CF) or those caring for children with lifelong condition.

The research, led by the University of Bristol and Cystic Fibrosis Trust, also reveals that families with CF are more likely to be struggling with their finances than the general UK population with a quarter (24%) of adults with CF and over a third (35%) of parents of children with CF reporting that just meeting their monthly bills was a ‘constant struggle’. This is compared to 17% of UK households overall.

The study analysed focus groups, one-to-one in-depth interviews and an online survey with adults with CF and parents of children with CF.

Study author Jamie Evans, Senior Research Associate from the University of Bristol Personal Finance Research Centre, said: This study highlights how long-term health conditions such as cystic fibrosis can have significant knock-on impacts on families’ finances, both by adding extra costs and potential resulting in loss of income as well. Financial difficulty can also worsen people’s mental and physical health – for example, by forcing them to cut back on spending on the very things that keep them healthy. With this in mind, it is crucial that policymakers take action to protect the financial wellbeing of those with CF and similar conditions.”

The full results showed:

-          A typical family with CF will lose £564 per month (£6,768 a year) because of the condition, with parents of children with CF reporting higher financial impacts than adults with CF.

-          An adult with CF will typically spend £209 extra a month on increased costs because of their condition, while parents of children with CF spend £291 more per month, as a result of cost associated with travel to and from medical appointments, medical treatments, dietary requirements and higher energy bills.

-          Three-in-five (59%) of adults with CF had also incurred some form of income loss as a result of their condition in the last two years – for example, reducing working hours, taking unpaid leave to attend appointments or leaving work altogether.

-          Other financial issues such as difficulty accessing insurance and benefits, prescription charges and finding suitable accommodation disproportionally disadvantage people with CF compared to the general UK population.

-          Overall, 76% of adults with CF and 85% of parents of children with CF report that thinking about their finances makes them feel anxious.

As the cost-of-living rises, the Cystic Fibrosis Trust is calling for urgent action to help reduce costs for people with cystic fibrosis, Cystic Fibrosis Trust. This includes the following measures:

-          Benefits continue to rise in line with the cost of living and unnecessary re-assessments for people with long term conditions are reduced.

-          No one with cystic fibrosis should have to pay prescription charges or VAT on energy bills.

-          Hospitals ensure that parking and food are affordable.

Jess, an adult living with CF said: "Living with CF has always caused my life to be unpredictable, which has cost me financially as well as in many other aspects of my life. CF is such a misunderstood condition and, in my experience, most people find it tough to comprehend the need for unplanned admissions and appointments which are such regular occurrences for so many CF patients. I have been unable to work for so long due to fluctuations in my health and various added complications caused by my CF so have had to rely on my family for financial support, as state benefits just do not cover my living costs.

"Living in London, I frequently pay over £20 just to park my car in order to attend an appointment, as parking is so limited and disabled spaces are few. I just find there are always little extras I need to cover on a weekly basis; parking, taxis, extra food and even items which are not issued in my prescription yet are imperative to my daily medical routine. If I am ever lucky enough to have the opportunity for a holiday, the travel insurance to cover me can cost more than the holiday itself! It can be an expensive thing to have a condition which demands so much from you and Cystic Fibrosis is certainly no exception to that concept."

Shane, an adult living with CF, said: "I've just had the flu, and needed to keep the house warm which meant my gas meter was eating all my wages. I’ve had to dip into my emergency fund more than once recently. I can’t put a price on my health but with these price hikes I feel like I’m having too."

David Ramsden, Chief Executive of Cystic Fibrosis Trust, said: “This research shows the huge financial burden that comes with having cystic fibrosis, a lifelong and life limiting genetic condition. With the cost of living crisis pushing bills even higher, there is a desperate need for action to support those facing these additional costs.”

Further information

About Cystic Fibrosis

  • Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
  • There are over 10,908 people with cystic fibrosis living in the UK and the population is growing every year. 
  • In terms of the nations the numbers of people with cystic fibrosis is as follows: England 9,044; Scotland 925; Northern Ireland 485 and Wales 454. 
  • Of those who died from cystic fibrosis in 2021, the median age of death was 38 years of age. 
  • Two million people in the UK are carrying the faulty gene without realising it. If two carriers have children, there’s a one in four chance their child will have the condition, which slowly destroys the lungs and digestive system. 

About Cystic Fibrosis Trust 

  • The Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited for everyone affected by cystic fibrosis. 
  • The Trust provides confidential advice, support, and information on any aspect of cystic fibrosis, including help with financial support.
  • To contact the Cystic Fibrosis Trust helpline call (+44) 0300 373 1000 or (+44) 020 3795 2184. 
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