Impact of cystic fibrosis on living costs debate in Parliament

On Thursday, 2 February 2023 Members of Parliament in Westminster debated the impact of cystic fibrosis (CF) on living costs (watch here). The debate followed an online briefing for politicians from across the UK parliaments organised by Cystic Fibrosis Trust where lawmakers had the opportunity to hear directly from those with experience of living with CF.

This briefing highlighted the Trust’s recently published report in collaboration with University of Bristol on the financial cost of living with CF. The report revealed that families with CF are more likely to be struggling with their finances than the general UK population, with 24% of adults with CF and 35% of parents of children with CF, describing meeting their bills each month as a ‘constant struggle’, compared to 17% of UK households overall.

Member of Parliament for Strangford in Northern Ireland, Jim Shannon MP, opened the debate and raised the urgent need to review the list of medical conditions exempt from paying for NHS prescription charges in England (NHS prescription charges are already free in Northern Ireland, Scotland, Wales) and the need to add CF to this list. Jim mentioned how when the exemption list was drawn up in 1968, CF was viewed as a condition affecting children who were exempt from paying prescriptions – but that “there are now more adults than children living with CF and it continues to be one of the few chronic, life-shortening conditions where people pay for their prescriptions.”

Other MPs shared the personal stories of their constituents living with CF and struggling to make ends meet were shared. Shadow Minister for Public Health, Andrew Gwynne MP, quoted Jess, an adult living with CF who said, “In almost every aspect of day-to-day living, it is more expensive to be a person with CF.”

Whilst Andrew Western MP (Stretford and Urmston) spoke of his constituent Eva, who has CF, and her mother’s concerns that when Eva turns 16 she will no longer be eligible for Disability Living Allowance (DLA) and worries she will be refused Personal Independence Payment (PIP) “even though the things for which Penny was given DLA still need doing and funding.”

Many of the MPs present spoke about the double financial-hit families living with CF experience, because of the necessary extra costs. These can be things such as having to spend more on heating, food, medical equipment, and travel to hospital appointments, as well as the lost income due to caring responsibilities, illness and having to take time off work.

Responding on behalf of the Government, Helen Whately MP (Minister for Social Care at the Department for Health and Social Care) made no commitments on the issues raised by MPs during the debate – but said she recognised “the fantastic work undertaken by Cystic Fibrosis Trust, which advocates on the behalf of people living with cystic fibrosis and their families and continues—very effectively indeed—to bring their needs to the attention of parliamentarians. The work of the Trust to help people with the increased financial burdens associated with cystic fibrosis, be it through direct financial assistance or by providing advice and information to those in need, is substantial and should be commended.”



Please continue to keep this conversation going and share your story of the cost of living with CF with your MP. You can find your local MP’s contact details here by entering your postcode. 

Read the report from University of Bristol

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.

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