Select Committee on Health Written Evidence


Memorandum by CancerBACUP (PI 7)


  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.


  2.1  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
Publication income
Donations from charitable trusts
Donations from companies*
Special event and trek income
Grants receivable
Investment income

How the money is spent

*This includes, but is not limited to, pharmaceutical companies
Cancer support service
Publications about cancer
Fundraising costs
Special events and trek costs
Publications costs
Research and evaluation
Marketing and communications
Management and administration

  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.


  3.1  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.


  4.1  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.


  5.1  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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Prepared 26 April 2005