Select Committee on Health Written Evidence

Annex 1



  The existing policy on working with pharmaceutical companies has served the Society well. It has enabled to Society to have open and transparent discussions with pharmaceutical partners in a field that is changing fast. Indeed, the Society was praised for its transparency in a recent Which? report which found that out of 125 patient groups, only two—the Alzheimer's Society and Diabetes UK—had an accessible, clear policy.

  We now have four major drugs on the market for the treatment of dementia. In addition, people with dementia are significant users of a number of antipsychotic drugs and most pharmaceutical companies have at least one drug for the treatment of Alzheimer's under development.

  Partnerships between pharmaceutical companies and voluntary organisations are very tightly regulated by the industry. They cannot, for example, promote their product to members of the general public. It is for this reason that many would welcome the opportunity of funding our work to a much greater extent, including awareness raising, information provision and increasingly service delivery.

  One of the current policy's strengths is its flexibility. This is also one of its greatest weaknesses. It has enabled the Society to both accept and turn down partnerships without justification or additional explanation. However, it has led to increasing confusion and a lack of clarity over what is and isn't permitted within the policy—especially at a branch level.

  There are two significant reasons why the policy should be examined now:

    —  Lack of consistency between policy at national and branch level.

    —  Lack of strategic direction in developing partnerships.

  I have also recommended that this policy is revised in tandem with a review of sponsorship more broadly. There is a lack of clarity on this issue at both a national and a local level.

  During discussions with staff, it is clear that there is some dispute over what the Society's policy should be. I have highlighted a number of scenarios which the Society has been faced with over the past few months. The aim is to develop a stronger consensus and shared understanding. Which partnerhips would you permit?


Q1  During Alzheimer's Awareness Week a branch wants to organise a meeting targeted at GPs. It wants to seek financial support from a drug company for the cost of lunch, speaker expenses and hire of hall. Do you think they should be able to do this?

  Within the existing guidelines, the branch can accept an educational, unrestricted grant/donation towards the cost of the conference. This donation has to be publicly acknowledged, but the drug company logo must not appear alongside the Alzheimer's Society logo. Nor must the company have any control over the conference programme or the participants invited to attend. The drug company will often have a public presence at the event such as a stand. This does not count as "sponsorship". It is often recommend that the branch works with the PCT to put on a joint event.

      —  Q1A  If you accept support for the above branch meeting do you think that national office should accept unrestricted grants from drug companies for its conferences, eg younger people with dementia/national AAW event?

Q2  A branch is desperate to obtain funding to enable them to continue to provide a very successful early intervention project for people with early stage dementia. The PCT says that there is no money to continue funding a very effective project. The branch know that a drug company is prepared to support the project. The drug company says that it doesn't need to have its name mentioned on any of the information leaflets about the service. Can the branch accept the money?

  We are currently saying no. Instead, we suggested that the PCT, which is supportive, acts as a broker.

Q3  The Society has developed an excellent training workshop package for primary care staff on early diagnosis. It is working with a private training provider in order to deliver the training to GPs. This provider is seeking sponsorship from drug companies for the training. Even though the Society has secured endorsement from the Department of Health and the Royal College of GPs, and we provide the materials and the speakers our logo (and hence our name) will not appear on the conference flyer. Some of the drug companies find it hard to see how this opportunity fits within our guidelines. Do you think we're missing an excellent opportunity?

    —  Q3A  Would you be happy if branches approached drug companies in a similar manner in order to put on much needed training?

Q4  A branch receives a donation from drug company for a laptop and projector. Is this ok?

Q5  A branch wants to approach a drug company that does not have any Alzheimer's drugs on the market. Who should be responsible for advising them on this?

Q6  The public affairs team is asked to comment on a market research proposal for the development of a new drug. Should it help?

  Currently we say no. The existing guidelines say that we will help with information etc. However, we have an unwritten policy that we only deal directly with a pharmaceutical company. We also have an unwritten policy that if they can't tell us who it is they are working for, we can't help. This is based on a policy of being as honest and transparent as possible (it is also a really quick way of getting people off the phone!). We do however offer advice on how to write patient information leaflets etc—sometimes we get a donation for this work.

  We also facilitate carers/people with dementia speaking to drug sales teams. Branches sometimes receive a donation for this work. The public affairs and information and education teams have worked closely with several agencies on the launch of products and press releases.

Q7  A drug company wants to pay the Society £5 for every questionnaire returned by an old age psychiatrist and to use this as an incentive to increase returns. Should we accept?

  We say no. A branch did however say yes to a similar offer and received £600.

Q8  A drug company wants to buy and distribute 20,000 copies of "Im told I've got dementia" and also sends our posters and information to all GP practices during Alzheimer's Awareness Week. Is this ok?

Q9  Both a branch and national office want to approach a drug company for prizes for raffle. Is this allowed?

Q10  A national memory clinic website supported by a drug company under the name of "Dementia Link" wants to give the Society a prominent link. Alzheimer's Scotland have their logo/link on the front page. This could be an important link for many people wanting to find out about memory clinics. Should we have our logo added?

  We ended up putting our name (in house style yellow) but not our logo on this site. We later ask for it to be removed because of concerns about site and the way in which this is presented as the Society's endorsement.

Q11  The Society is offered editorial and advertising space on a supplement in Pulse magazine (for GPs) which is sponsored by a drug company. This is a target audience for the Society. Should we take the space?

  We decide to accept even though this does mean that logos appear on same publication (though not on same page). We insist that our piece is moved to a page with no product endorsement.


  Depending on feedback from discussion on the above scenarios, I suggest that minor amendments are made to the existing policy:

    1.  Include a definition of what we mean by sponsorship. Suggest that sponsorship is defined as an event where a sponsor's logo is used, and the wording/credit acknowledged might be part of the sponsorship negotiation. Sponsorship is different from an unrestricted donation for an event—this requires a one line credit, logos are not used and the Society controls the wording, position of credit and all activities associated with organising the event.

    2.  Include a new clause stating where possible, we favour the use of funding consortia composed of two or more companies from the same industry.

  In addition, there are a number of other suggestions that are worth considering:

    3.  Should there be a limit to the percentage of income/project that may be funded by a drug company? At the moment it is about 1% at national level. Do we think that is about right? We have no idea about the amount given to branches.

    4.  The current policy says that all contact should be made through the Head of public affairs. It is appropriate that there is a central contact, but the current policy does not work well. Suggest that the regional teams act as a first point of contact for branch enquiries. There is good co-ordination between public affairs and regional teams on this issue.

    5.  There is also a need to be more strategic in our partnerships with pharmaceutical companies. The Society tends to wait to be offered opportunities rather than actively seeking agreements to work on a joint project. Notable exceptions to this include the support of the production of the Working Together Video by Pfizer and a grant from Novartis for research on the use of drugs.

    6.  I also recommend that this policy is revised in tandem with a review of sponsorship more broadly. There is a lack of clarity on this issue at both a national and a local level.

    —  This requires a broader review and needs to include sponsorship of publications and newsletters. Who do we want sponsoring information/advice sheets or the Carers Handbook for example?

    —  Also, some branch newsletters for example carry advertisements for local care homes and solicitors. Should this be allowed?


  The scenarios highlight the varied nature of our partnerships with pharmaceutical companies. On the whole, the Society has positive relationships with the pharmaceutical companies and the agencies that they use.

  There have been many strategic alliances and information about the Society is now included on all patient and carer booklets that are distributed with the drugs. As a result, the Society has received new members, particularly from people with dementia. However, it is essential that the Society is, and is perceived as being, an independent provider of accurate information.

April 2003

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