Cystic fibrosis sufferers facing heavy financial, mental and physical burdens

An alarming 43 per cent the UK's cystic fibrosis sufferers worry about their future every day - as they shoulder a daily physical, mental and financial burden, a new report reveals.

CF is a life-limiting genetic condition that slowly clogs the lungs with thick mucus, with over 11,000 sufferers in the UK and only 100,000 in the world - and before 2019 there was no effective treatment on the NHS.

But despite UK sufferers now being able to access a range of lifesaving wonder drugs on the NHS, like Kaftrio, patients have been heavily affected by the Covid lockdown, the cost-of-living crisis and a recently worsening scarcity of a vital CF drug called Creon that sufferers need to take with each meal to help them digest the food.

Now ahead of Cystic Fibrosis Week (17-23rd June) the CF Trust charity have revealed shocking new patient survey data that unmasks the burden of living with the life-limiting condition that has no cure.

They found on average, patients are taking a staggering 34 tablets a day, with the most reported at a mind-blowing 150 a day.

While 42 per cent of respondents also said the burden of monitoring CF health at home was high or very high.

In order to stay well, many people with CF have to follow a high-calorie diet, undertake daily exercise and physiotherapy to help clear their lungs, and go for frequent health checks at their local CF centre.

But there is also a huge mental toll, with 1 in 3 worried about their mental health every single day.

The report also reveals that people with CF rate their average happiness levels at just a meagre 5.6 out of 10 - when the national average is 7.5.

This result is 5 per cent lower than in 2023 and significantly lower than in 2016, when people with CF rated their average happiness levels at 7.36.

People with cystic fibrosis cannot meet each other in person due to the risk that they infect each other with very harmful bugs.

This can be an isolating experience, when you can’t be close to people who are going through the same thing you are.

And there is also a huge financial burden that comes with CF, over and above general cost of living pressures. For a typical family, the added financial cost of having CF is nearly £6800 a year.

This is made up of both extra spending to keep well (heating, maintaining a high-calorie diet, attending medical appointments, home medical equipment, prescription charges) and loss of income.

For the third year in a row, the report has shown that 1 in 5 people with CF have missed a hospital appointment due to the associated cost of attending in the last year.

Additionally, 39 per cent said they were currently choosing between essentials like heating their homes and putting food on the table, and 21 per cent of respondents had run out of food before they had money to buy more.

While 10 per cent of respondents owe their energy provider over £250, with 2 per cent owing more than £1000. People with CF need a warm, dry home to stay well, and rising costs continue to pose a risk to health.

A quarter of those who responded to the survey had been uncomfortably cold in the last 12 months and 52 per cent had to go to work despite being ill because they were unable to afford to take time as sick leave.

David Ramsden, Cystic Fibrosis Trust Chief Executive said: "People with cystic fibrosis live with a 24 hour a day, 365 day-a-year life-limiting condition that impacts all their life choices.

"This report reveals that people with CF are feeling the mental, physical and financial pressures of their condition more and more – with many running out of money to buy essentials, worrying about the future, and missing vital hospital appointments.

"We need meaningful change for everyone affected by CF by bringing in long term solutions – ensuring free prescriptions for life-saving medicines, making sure everyone with CF has access to vital specialist care, and acting to improve air quality, bringing health benefits to people with CF and the whole population."

CF sufferer Emily Pink, 21, from London but attending the University of Exeter, said: "Being a university student with CF has come with so many challenges.

"In halls, my accommodation was spotless, heated, and damp free. Student housing doesn’t have that privilege. It is very expensive, and bills aren’t often included. You can see your breath in the house, and the winters are so cold.

"I had to have IV antibiotics twice in a month in my second year, and lots of oral antibiotics too. I was really struggling both mentally and physically.

"After all the improvements to my health from Kaftrio, I felt a bit invincible. But when CF comes to bite, it feels so much harder to cope with. I think it just reminds you that you are still sick, that you are not magically cured."

Cystic Fibrosis Trust is now calling on the governments across the UK to implement key policy changes to ensure people with cystic fibrosis are able to live free from the limits of CF. These include:

* Equity for all - Access to free prescriptions for everyone with CF and an uplift in Statutory Sick Pay.

* Breathing greener - We want to improve air quality for those with lung conditions, including introducing the early alert warning system to protect those with CF.

* Access to care - Secure the future of CF specialist care and address staffing recruitment and retention in CF teams.

* For information or support with cystic fibrosis, Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000, on email at helpline@cysticfibrosis.org.uk or on WhatsApp 07361 582053