You didn’t die as a child? Pay for your prescription

I learned something shocking in the Forum discussion on my Cystic Fibrosis Breathing Life Awards: adults with Cystic Fibrosis (average life expectancy 31), who take huge and regular medications, are not exempt from prescription charges.. (except in Wales where all prescriptions are free – see the Cheap Prescriptions and Medications guide).

The allegation was that CF isn’t on the list of illnesses whose medications are exempt because when the exempt list was drawn up very few people survived into adulthood, so it wasn’t needed.

I found this staggering, so to check it out I contacted the CF trust charity to find out if this is true. Here’s its reply:

“The reason people with CF in England are not exempt from prescription charges is because when the exempt list was drawn up in 1968, most people with CF did not live beyond childhood, and as children were and still are exempt from prescription charges there was no need for this condition to be on the list.

The exemption list has not been reviewed since 1968! Nowadays, thanks to improved treatments and earlier diagnosis, people with CF thankfully live a lot longer, but as the list hasn’t been reviewed, have to start paying for their prescriptions once they turn 16 (as you will have seen from the videos, they have to take an awful lot of drugs). Ironically, if people with CF develop diabetes, which about 15% do, they will be exempt from prescription charges as diabetes is on the exempt list.

There are pre-payment (see Cheap Prescriptions and Medications guide – ML) certificates which lower the overall cost burden, however it is still unjust that Cystic Fibrosis, a life-threatening condition which requires intensive daily medication in order for people to stay alive, is not on the list.

The government has admitted that CF does meet all of the criteria and should in fact be on the list. In 2006, it launched an inquiry into NHS charges to which we submitted evidence, and has been promising a public consultation, which was supposed to be launched last year but seems to have been delayed, so we’re just keeping an eye on the situation at present.”

What an extraordinary and ridiculous situation. It’s at moments like this you want to bang all politicians’ heads together and say “just sort it!”

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