REVIEW OF THE GUIDELINES ON WORKING WITH
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 twothe Alzheimer's Society
and Diabetes UKhad 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
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 policyespecially at a branch
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
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
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
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
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 etcsometimes 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
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.
3. PROPOSED RECOMMENDATIONS
Depending on feedback from discussion on the
above scenarios, I suggest that minor amendments are made to the
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 eventthis 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
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.