Cancer coalition report
shows patients demand central role in key
negotiations
An influential coalition of leading cancer charities, led by
Prostate Cancer UK, has criticised the government for shutting
patients out of crucial talks on changes to the UK-wide system for
pricing and assessing new drugs. The cancer charities warn that
ignoring the views of patients risks seriously undermining the
credibility and effectiveness of the new system before it has even
been established.
Discussions are underway to discuss a shift from the current
system of pricing and assessing drugs. A new system that prices
drugs according to their value to the patient and society
(value-based pricing) is being considered, representing a move away
from the current system which many feel focuses too much on
cost1. However the discussions taking place to establish
this new system only involve the government and the pharmaceutical
industry, with patients being denied a voice.
In the absence of any meaningful public engagement Prostate
Cancer UK has taken the initiative to work with other charities to
research the views of people affected by cancer in an attempt to
ensure they are put at the heart of the new plans. Their
report published today "Value-based pricing: getting it right for
people with cancer," presents the collective voice of over a dozen
leading cancer charities and provides crucial insight into patient
opinion on these vitally important negotiations.
The report sets out that, although the principle behind the
reforms are welcome, members will not support value-based pricing
unless it can be shown to lead to improvements in access to vital
drugs. It finds that people affected by cancer see reform as an
opportunity to improve the current system - but that they want and
need to have an equal voice in negotiations. It also proposes a new
body to represent and strengthen the voice of patients in the drug
appraisal process across the UK. Furthermore the report highlights
that, in addition to placing a high value on drugs which provide
clear clinical benefits, people affected by cancer value drugs
which improve quality of life, especially drugs which reduce pain
and fatigue, and they place a high value on end of life drugs.
Owen Sharp, Chief Executive of Prostate Cancer UK said: "NHS
patients throughout the UK rightly expect to be amongst the first
in the world to access the best, most innovative treatments for
their condition. But, as we know all too well, this is not always
the case. Whilst we welcome efforts to move away from the current
unwieldy process of pricing drugs, it is clear that a new system
which better reflects the value medicines bring to patients cannot
be achieved if patients are not included in the process.
"We know that men and women affected by cancer have the
experience, the knowledge and above all the desire to help develop
a better system. Today patients are demanding the opportunity to do
so. We stand full-square behind them and urge the government
to ensure their voice is heard."
Hugh Gunn, who has prostate cancer and is a patient
representative at Prostate Cancer UK, said: "It doesn't make sense
that those who will be directly affected by the changes to drug
pricing have not been consulted. I have been through the
severe pain of cancer followed by the liberating gift of a
breakthrough treatment. In my view, to ignore experiences such as
mine when defining the value of new drugs would be a terrible
mistake.
"There are so many articulate and informed patients who are
willing and able to air their views. It's time we, the people to
whom these negotiations matter most, were put at their heart rather
than being kept on the sidelines."
Key recommendations set out in the report include:
- Reform
of the current system must lead to significant improvements in
access to clinically effective drugs across the UK.
- A new
and improved method for involving people affected by cancer
in the process of appraising drugs must be introduced. People
affected by cancer think that a new collective body that represents
patients in drug assessments may be a good way to do this
- Drugs
which improve people's quality of life should attract the greatest
value, with reductions in pain and fatigue as a high priority.
- Drugs
which give people nearing the end of their lives precious extra
time should be given a higher value, and this must be reflected in
the new system
- People
affected by cancer are concerned about he proposals to give higher
value to drugs aimed at helping people back to work, as this poses
a risk that many people affected by cancer will lose out as
they will have already retired or are too unwell to return to
work.
ENDS