APPENDIX 4
Memorandum by CancerBACUP (PI 7)
1. INTRODUCTION
1.1 CancerBACUP is the leading national
charity providing information and support to people affected by
cancer. The charity's specialist cancer nurses answer more than
60,000 enquiries a year from patients and carers on all aspects
of cancer and its treatment. CancerBACUP's services include a
telephone helpline, a wide range of booklets and factsheets, an
award-winning website and a network of local information centres.
In addition to providing information and support, CancerBACUP
works to promote patient-centred services and equitable access
to high quality treatment, information and support for everyone
affected by cancer.
2. CANCERBACUP
FUNDING
2.1 In 2002-03, CancerBACUP's total income
was £3,909,876.[9]
Donations from pharmaceutical companies represented less than
10% of this figure. A summary is given below of where the charity's
money comes from and how it is spent.
|
| Where the money comes from |
|
|
| Donations from individuals | 47%
|
| Publication income | 15%
|
| Donations from charitable trusts | 13%
|
| Donations from companies* | 9%
|
| Special event and trek income | 9%
|
| Grants receivable | 5%
|
| Investment income | 2%
|
|
| How the money is spent |
|
|
| *This includes, but is not limited to, pharmaceutical companies
| |
| Cancer support service | 47%
|
| Publications about cancer | 19%
|
| Fundraising costs | 13%
|
| Advocacy | 6%
|
| Special events and trek costs | 5%
|
| Publications costs | 4%
|
| Research and evaluation | 2%
|
| Marketing and communications | 2%
|
| Management and administration | 2%
|
|
2.2 CancerBACUP seeks funding from pharmaceutical companies
to pay for booklets and other publications, and for specific events
and campaigns. Such funding allows the charity to spend the money
donated by members of the public—which is the biggest single
source of our income—on providing services directly to people
affected by cancer.
3. POLICY AND
GUIDELINES ON
WORKING WITH
THE PHARMACEUTICAL
INDUSTRY
3.1 As the UK's leading provider of information and support
to people affected by all types of cancer, CancerBACUP relies
on its reputation for independence, impartiality and a commitment
to the highest standards. The charity recognises that accepting
funding from pharmaceutical companies is something that needs
to be approached with caution. We therefore maintain a written
policy and guidelines statement on working with the pharmaceutical
industry. This sets out the terms under which we will accept funding
from individual companies.
3.2 CancerBACUP believes it is important to maintain
cooperative relationships with companies that manufacture and
market cancer drugs and other treatments. We maintain relationships
with a wide range of companies and are not reliant on a single
one.
3.3 The charity accepts financial support from pharmaceutical
companies and groups of companies if there are strong grounds
for believing it will result in benefit to our service users and
supporters, and if there is no attempt on the part of the company
or companies to influence CancerBACUP policy or actions either
explicitly or implicitly.
3.4 It is our view that relationships between CancerBACUP
and individual pharmaceutical companies can and should be based
on equal partnership. The charity will not enter into a relationship
designed to give one company obvious competitive advantage over
another, and where possible we favour the use of funding consortia
based on two or more companies working together. However, CancerBACUP
will enter into strategic partnerships with individual companies
if these match the charity's corporate objectives.
3.5 We recognise that patient groups and pharmaceutical
companies inevitably have some shared interests. While we are
not interested in profits, we are strongly committed to ensuring
that people with cancer have access to the most effective, up-to-date
treatments available. We would be doing the patients we seek to
serve a disservice if we failed to make the case for equitable
access to treatments that have been recommended as clinically
and cost-effective.
4. ENDORSEMENT OF
PHARMACEUTICAL PRODUCTS
4.1 CancerBACUP supports the availability of the widest
possible range of effective treatments, whether drugs or otherwise.
The charity does not endorse individual treatments, of whatever
kind, because we believe that people living with cancer need the
widest possible range of treatment options and the freedom to
integrate them as they wish. CancerBACUP seeks to encourage active
partnership between patients and health professionals and the
discussion of all available options, in the interests of informed
choice on the part of the patient.
4.2 CancerBACUP retains full editorial control over all
our publications, and we will not put ourselves in a position
of appearing to promote or endorse specific products.
4.3 However, if there is widespread consensus that a
particular type of treatment might be beneficial for cancer patients—if,
for example, it has been recommended by the National Institute
for Clinical Excellence (NICE)—then the charity has no hesitation
in calling on NHS funders to make resources available to implement
NICE guidance.
5. EXAMPLES OF
SUCCESSFUL PARTNERSHIPS
5.1 Some examples of successful joint initiatives between
CancerBACUP and the pharmaceutical industry are given below. These
examples show that relationships with industry are not always
financially based.
5.2 Distribution of CancerBACUP helpline cards and
posters
CancerBACUP aims to let everyone affected by cancer know
about our telephone helpline, which is run by specialist nurses
who can answer any question about any type of cancer. However,
as a medium-sized charity with limited resources, we are not in
a position to pay for widespread advertising of our service.
Over the last 12 months, more than 75,000 cards and 35,000
posters giving details of the helpline have been distributed to
cancer centres, GPs' surgeries and pharmacies across the UK by
sales representatives from ten major companies. There is no branding—other
than the charity's own—on any of the materials. This has
helped a greater number of people gain access to CancerBACUP's
information and support than the charity would have been able
to reach without this assistance.
5.3 Campaign to highlight access to treatment for
advanced breast cancer
In October 2003 CancerBACUP publicised data given to the
charity by Roche showing substantial regional variations in access
to trastuzumab (Herceptin), a treatment recommended by NICE that
can prolong the lives of some women with advanced breast cancer.
The data was compiled by analysing sales of Herceptin region by
region and matching this with projected numbers of patients who
would be eligible for treatment.
The charity welcomed this information, which was not available
from any other source, as it gave us an opportunity to highlight
continued problems faced by patients who cannot obtain the treatment
they need because local decision-making in the NHS conflicts with
national guidance. As a result, the national cancer director undertook
an investigation into access to cancer treatments recommended
by NICE and produced a series of recommendations that will help
ensure that more patients receive the treatment they need.
5.4 Living Everyday
CancerBACUP worked in partnership with Ortho Biotech on an
information campaign called "Living Everyday" to help
people affected by cancer-related fatigue gain access to an information
pack on fatigue produced by the charity. CancerBACUP produced
the pack in recognition of the fact that people with cancer identify
fatigue as their most important untreated symptom.[10]
As has already been stated, CancerBACUP does not have the
resources to pay for national advertising. Ortho Biotech provided
a grant to enable us to advertise the information pack in the
national press over a five-month period in 2001. As a result,
1,760 packs were sent out to people who responded to the advertising
campaign, which was aimed specifically at people undergoing treatment
for cancer.
5.5 Fringe meetings at party conferences
CancerBACUP believes that political party conferences offer
an important opportunity for the charity to discuss with policy-makers
and influencers the issues of greatest concern to people affected
by cancer, and to increase our own understanding of the wider
context in which policy-making takes place. We regularly organise
fringe meetings at each of the three main party conferences to
provide a forum for patient-centred debate on cancer care.
The cost of hosting and publicising these events is high
for an organisation like CancerBACUP, therefore we welcome the
opportunity to host fringe meetings in association with a pharmaceutical
partner. We have previously worked with Aventis in this way and
are currently working with Lilly. It is our practice to be open
about such partnerships; the meetings are publicised as a joint
initiative and the theme is agreed by both partners.
9
2002-03 is the most recent financial year for which accounts
have been finalised. Back
10
Stone P et al (2000), "Cancer-related fatigue: inevitable,
unimportant and untreatable? Results of a multi-centre patient
study", Annals of Oncology: 11: 971-975. Back
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