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 UKunless
they contract diabetesmust 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
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
1. CYSTIC FIBROSIS
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.
2. 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: www.cftrust.org.uk
3. TERMS OF
(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
The Cystic Fibrosis Trust believes the current
system of prescription charges is sufficiently transparent, but
(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
(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."
4. FURTHER INFORMATION
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/yearfrom
a total drugs bill of £6.88 billion. The benefits for the
person with CF far outweigh any strain placed on the NHS.
The Cystic Fibrosis Trust
2 December 2005