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The National Information
and
Advice Centre
for Metabolic Diseases
CLIMB POLICY ON
RELATIONS WITH COMMERCIAL COMPANIES
Climb
is a national umbrella organisation working on
behalf of children, young people and families
affected by metabolic diseases.
There are
more than 1300 metabolic disorders, most of them chronic, progressive,
disabling, severe to very severe and more often than not, life threatening.
They mostly affect children but also adults and can occur at any time in
life. There are no treatments and no cures for most of them and they affect
25 to 30 million people throughout Europe.
Climb
supports over 4000 families throughout the United Kingdom and Europe.
Worldwide the support extends to over 6000 families and support groups.
In common
with many other patient organisations,
Climb
must increasingly rely on corporate financial support for a significant
proportion of its core and project funding. It recognises that, in return,
companies would expect their support to be acknowledged publicly.
Corporate
funding helps to maintain the services of
Climb
but it is essential to establish rules about such funding and about what
companies may or may not expect from
Climb
in return.
This policy
exists:
- to clarify
Climb’s
position regarding commercial companies;
- to clarify
Climb’s
position to its members;
- to clarify
Climb’s
position to the general public.
Directors and staff of
Climb
are expected to adhere to this policy, which will be reviewed from time to
time. The policy does not set out to provide a definition of every possible
funding opportunity but, rather, it provides a set of principles.
Climb
believes it is important to maintain co-operative relationships with
commercial companies in order to enhance communication between the
families/parents/young people, whose interests we represent, and the
companies, whose decisions will affect their treatment.
Relationships between
Climb
and the commercial companies will be based on equal partnership and will
work in the interests of the families/parents/young people while preserving
Climb’s
independence and integrity. To ensure such a partnership is successful each
partner should learn to understand the internal culture of, and external
pressures on, the other. This should include, however, the knowledge that
the companies’ profit motive may, from time to time, be in conflict with the
needs of Climb
to maintain its independence and that in such situations funding from the
companies would not be accepted.
Climb
recognises that metabolic conditions can limit the number of companies that
may be interested in offering financial support and that the consequent
relationship between
Climb
and funders may appear too close and give the impression of ownership of the
organisation by particular companies. The above policy is written to keep a
transparent position regarding this aspect.
Climb
welcomes funding from companies so long as its independence is not
compromised and there is total transparency in the relationship. A contract
between the parties outlining this concept maintains clarity.
Climb
must not appear to endorse products or brands, be associated with a company
that is unpopular with its public or appear to be partisan in any way.
Climb
should avoid financial support from companies that make unsubstantiated or
misleading claims about their products.
Companies can be involved in
project funding, sponsorship funding, grant funding or one-off donations
either individually or collectively.
Project funding allows
Climb
to develop a close, mutually beneficial relationship providing dependable
income sources over a number of years. It allows the funder to gain public
credit for their involvement while projecting the functions of
Climb
in a way that appeals to company interests and maximises such funding
opportunities. Public association of one company with
Climb
can also encourage other companies to initiate or increase their support in
competition. Prior agreement will have been reached as to the level of
publicity given, including the logo type used and the wording that is
credited to the company and its support.
Sponsorship funding would apply where a
single activity stream related to
Climb
was being financed such as a conference or means of communication such as
the newsletter, leaflets or website. In such cases
Climb
controls the wording and position of credit given or the logo type which may
be used (by prior agreement).
Grant funding would apply in relation to
the finance of personnel including trainees, staff with a particular job
specification such as information resource and assistance with travel
expenses. In such cases acknowledgement would be as for sponsorship.
One-off
donations may not attract an obligation on the part of
Climb
to acknowledge support. However this may be given by way of the Annual
General Meeting, publication in
Climb’s
Annual Report or public acknowledgement at a particular function (eg
conference).
Climb
recognises that companies wish to be publicly acknowledged for their
financial support. When they are referring to financial support they have
given to Climb
within their own literature, the wording used and/or the
Climb
name and logo cannot be published without the prior approval and agreement
of the Executive Director of
Climb.
Any publicity information must be jointly agreed between
Climb
and the company.
When funding is agreed/approved a contract
will be negotiated between the company and
Climb
taking into consideration he following principles:
- Any funding from
companies must be committed to ensuring benefits to
Climb
and those it represents, projecting no adverse publicity and having no
presumption by the funder that this in any way influences
Climb’s
policy whether explicitly or implicitly.
- Commercial use of the
Climb
name and logo by the donor must have the prior, explicit, written approval
of the Executive Director.
-
Climb
supports the availability of the widest range of products, orphan
medicinal products and treatments; it does not endorse individual
treatments; it encourages active partnership between patient and health
professionals and the discussion of all available options in the interests
of informed choice on the part of the patient.
- Where more than one
branded version of a medicinal product exists,
Climb
encourages the naming of all such products without prejudice.
-
Climb
opposes the marketing to families/parents/young people of any treatment
that has neither undergone clinical trials nor been examined and approved
by qualified specialists in the field.
-
Climb
cannot meet the needs of those for whom it exists without funding. As
Climb
plays a major role in the implementation of services and support within
Europe it is bound to attract the interest of industries which have a
particular investment in the development of treatments for metabolic
diseases.
By adopting a
transparent policy regarding its relations with commercial companies which
can be published within its literature and on its website,
Climb
is creating wider opportunities for future funding while making clear how
this will not compromise its independence and future policy decisions
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