Select Committee on Health Written Evidence

Memorandum submitted by the Cystic Fibrosis Trust (CP 4)


  Cystic Fibrosis is a life-threatening condition for which there is no cure. Although the outlook has improved for people with Cystic Fibrosis (CF), many of those affected still die in their teens and early twenties. The average life expectancy is 31 years, and people with CF only live this long as a result of a daily regimen of medication and treatment. Before such treatment was available, most died as babies or very young children.

  At present, all adults with CF in the UK—unless they contract diabetes—must pay prescription charges for medicines that they have to take on a daily basis, and without which their life expectancy and quality of life would be severely compromised.

  This situation is demonstrably unjustifiable. The Labour Party in opposition accepted that Cystic Fibrosis should be on the list of conditions that are exempt from prescription charges, but failed to deliver on its promise to abolish prescription charges for adults with Cystic Fibrosis.

  The Cystic Fibrosis Trust has demonstrated that costs to the NHS to abolish prescription charges for Cystic Fibrosis would be minimal.

  In conclusion, the Cystic Fibrosis Trust believes that all adults with Cystic Fibrosis should be exempt from prescription charges.


  Cystic Fibrosis is the UK's most common, life-threatening inherited disease, affecting over 7,500 people in the UK. One in 25 people carry the faulty gene that causes CF, and one in every 2,500 babies in the UK is born with Cystic Fibrosis.


  The Cystic Fibrosis Trust was founded in 1964 and is the UK's only national charity working to fund research into a cure and effective treatments for Cystic Fibrosis and to ensure appropriate clinical care and support for people with Cystic Fibrosis. It aims to ensure that people with CF receive the best possible care and support in all aspects of their lives, and provides information, advice and support to anyone affected by Cystic Fibrosis.

  At present, and on request, the Cystic Fibrosis Trust pays the first year's prescription charges for all adults with CF, to help ensure that they are able to get their medication.

  For further information, please visit the Cystic Fibrosis Trust website:


 (a)   Are charges for treatments including prescriptions, dentistry and optical services, and hospital services (eg telephone and TV use and car parking) appropriate?

  For those who require regular or longer periods of hospital stay, telephone and TV charges in hospital can be prohibitive, as can car parking costs. Many CF patients fall into this category. These charges can be particularly problematic for people on low incomes, which is often the case for people with Cystic Fibrosis, who may be financially disadvantaged as they may have been unable to take up certain career/educational opportunities due to their illness.

 (b)   What is the optimal level of charges?

  The Cystic Fibrosis Trust accepts the principle of charging for prescriptions at the current levels for conditions that are not on the exempt list. However we would argue that Cystic Fibrosis should be on the exempt list.

 (c)   Is the system of prescription charges sufficiently transparent?

  The Cystic Fibrosis Trust believes the current system of prescription charges is sufficiently transparent, but is unfair.

 (d)   What criteria should determine who should pay and who should be exempt?

  The Cystic Fibrosis Trust believes the current criteria to be acceptable. However, although Cystic Fibrosis fits all of the criteria, it is not on the exempt list.

 (e)   How should relevant patients be made more aware of their eligibility for exemption from charges?

  A joint effort between the Government, medical workers and the relevant supporting body/organisation/charity should inform all patients of their rights.

 (f)   Should charges be abolished?

  The Cystic Fibrosis Trust does not believe all prescription charges should be abolished. However, as stated, the Trust firmly believes that prescription charges for Cystic Fibrosis should be abolished, for the following reasons:

  (i)  Cystic Fibrosis is a life-threatening, inherited condition for which daily medication is essential.

  (ii)  Adults with CF are often considerably disadvantaged in economic terms, because their condition prevents them from pursuing certain academic/career pathways. Further financial hardship is caused by having to pay prescription charges.

  (iii)  For those adults with CF in financial difficulty, prescription charges may deter them from seeking essential treatments, at serious risk to their health.

  (iv)  It is illogical and unjust that people with similar or less serious conditions are exempt from prescription charges, whilst those with CF are not. This is a source of considerable upset and frustration for people with Cystic Fibrosis and their families.

  (v)  Cystic Fibrosis meets the requirements set out by the British Medical Association in 1968 and accepted by the Government as criteria for exemption; specifically that it is a one of several "readily identifiable conditions, which in virtually all cases call for prolonged continuous medication."


  The list of medical conditions for which people are exempt from paying prescription charges was drawn up in 1968, and has not been revised since. However, it no longer accurately reflects the improved prognoses of people with Cystic Fibrosis. In 1968, most babies born with CF did not live beyond childhood, so prescription charges for people with Cystic Fibrosis were not an issue, and CF was not placed on the list. Thanks to improved treatments, today many people with CF reach adulthood. But on turning 16, they now have to pay for their prescription charges.

  Adults with Cystic Fibrosis are only exempt from prescription charges if they develop diabetes, a condition that approximately 20% of CF patients will develop, and a condition that is on the exempt list. This means that approximately 80% of adults with CF have to pay for daily medications without which their health would be severely endangered.

  Finally, the Cystic Fibrosis Trust has consulted extensively with consultants caring for CF patients, CF patients and their families. All agree that Cystic Fibrosis meets the criteria for inclusion in the exempt list. The Trust assumes that the Government has received no advice from any professional body that it would be inappropriate to include Cystic Fibrosis on the exempt list. Furthermore, exemption from prescription charges for those with CF would cost the NHS little over £100,000/year—from a total drugs bill of £6.88 billion. The benefits for the person with CF far outweigh any strain placed on the NHS.

Rosie Barns

The Cystic Fibrosis Trust

2 December 2005

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