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How we’re campaigning for the free prescriptions our community need
CF is one of a small number of long-term conditions that is not on the prescription charge exemption list in England, meaning that many adults with CF face extra costs for the daily medication they rely on. The Trust is campaigning hard alongside other charities in the Prescription Charges Coalition for a review of the exemption list, and we have recently taken this issue to parliamentarians in Westminster.
A survey from the Trust gathered views from the CF community about the impact of paying for prescription charges in England. We wanted to better understand the inequity that exists between CF and other conditions, as well as between those living with CF within the devolved nations who access their prescriptions for free.
It was unsurprising yet deeply worrying that there was such strength of feeling on this issue with over 800 people sharing their thoughts and concerns. The impact of paying for vital prescriptions was clear to see, and is just one of the many additional unfair costs of living with CF.
When asked about financial difficulties, almost 30% of respondents said they had skipped medication at some point due to the cost of prescriptions and 22% had gone without other basic essentials to pay for their medications. We believe now is the time for the Government to review the prescription charge exemption list in England and bring it up to date. 95% of those surveyed strongly agreed that prescriptions should be free for all people with CF and not just those who meet the criteria though other qualifying health conditions, so we took this to parliament.
On 2 February, Paul Maynard MP led a cross-party debate in Westminster Hall. He called on the Government to review the exemption list and ensure that long-term conditions like CF are added, given that CF was considered a paediatric condition when the current criteria were first drawn up in 1968. The debate, which also heard from Lee Anderson MP, Feryal Clark MP, Sir John Hayes MP, Ruth Jones MP, Kerry McCarthy MP and Jim Shannon MP, was responded to by the Health Minister, Edward Argar MP, who said he was moved by the personal stories and speeches and committed to sharing the information with the Minister responsible. Following the debate, Paul met with the minister responsible for prescription charges, Lord Kamall, to discuss the issue further.
Next steps
Now the Trust is writing to members of the Health & Social Care Committee, working with the Prescription Charges Coalition on the campaign to #reviewthelist and planning a day of action which will provide an opportunity for the CF community to be heard on this issue in UK Parliament.
Keep an eye on our channels for more information coming soon about how you can get involved.
Together, we can unite to make sure nobody with CF has to pay for the daily medication they need to stay well.
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.
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.