RELATIONS BETWEEN THE MS SOCIETY AND THE
PHARMACEUTICAL INDUSTRY STATEMENT OF POLICY
Following consultation with this industry and
other MS charities this policy was approved by the MS Society
Board of Trustees October 1999.
THE MS SOCIETY
1.1 The MS Society has relationships with
many different sectors of business and industry as a routine part
of its work on behalf of people affected by MS. It is often a
customer, sometimes a partner or contractor, and also benefits
from gifts in cash or in kind. In all these relationships, the
Society aims to behave ethically and to the standards expected
of a prominent charity; it works within the law.
1.2 The pharmaceutical and allied industries
(referred to as the "Pharma Industry" in this paper)
at present constitute the only sector of business with an interest
in the same unique group of people for whom the Society works.
This policy statement, the result of extensive consultation, sets
out the guidelines within which the Society will work. It is intended
Assure the Trustees that the Society
is operating within the constitution.
Enable the Chief Executive to make
decisions as necessary.
Clarify the Society's position to
its members, the Industry and the public.
Facilitate clear and unambiguous
relationships between the Society and the Pharma Industry.
1.3 Everyone who works for the Society,
whether paid or as a volunteer at national or local level, is
expected to observe these guidelines, as is the staff of the Industry.
In addition, the Industry is requested to ensure that consultancies
and contractors it retains adhere to them.
1.4 The Pharma Industry is a sector of business
with which the Society has only begun to work since the licensing
of the first disease-modifying treatments for MS. While it aims
to work to the same standards in all circumstances, special attention
is required for these relations.
1.5 In addition to other factors, specific
UK and European laws regulate the Industry, while the MS Society
operates under charity law. The Industry works under particular
constraints over promoting prescription-only medicines to the
public, while the Society's constitution emphasises education
and information. Both the Industry and the Society accept the
law and regulations for licensing and use of pharmaceutical products.
1.6 The Industry is concerned with the health
and well being of people with MS, but is of necessity concerned
with selling its products to the NHS and must provide a return
to investors. As a charity the Society works solely for the benefit
of people affected by MS and no other interest; its independence
is central to its work. Linked to this is the Society's public
reputation which it safeguards strenuously.
1.7 The paramount consideration for the
Society in its relations with the Pharma Industry will always
be the benefit or disadvantage that could result for people affected
1.8 These guidelines cover the following
The basis of partnership.
Research, information and publications.
Government, the NHS, the medical
and allied professions.
Endorsement and promotion of products
Support of healthcare workers.
Financial and other material support.
2. The basis of partnership
2.1 The MS Society values co-operative relationships
with the Pharma Industry, to foster effective and accurate communication
between people affected by MS and the companies whose decisions
will affect their treatment.
2.2 We consider that partnership is based
on openness and integrity. It is expected that the Society and
the Industry will each share full and timely information about
initiatives that bear on the other. Where this is limited for
reasons of individual, legal, commercial or other confidentiality,
each will ensure that the other is made aware of this. Any information
provided and accepted in confidence will be treated on that basis.
2.3 The interests of people affected by
MS will be best served if the Society and the Industry have a
partnership of equals. We recognise that successful partnerships
are based on mutual benefit, and consider that each party should
make efforts to ensure that it understands goals and internal
culture of the other, as well as the external pressures.
2.4 Serving the interests of people affected
by MS often requires the Society and the Industry to work together
on policy development and practical initiatives. Neither the Society
nor the Industry should assume the other's support without explicit
agreement, formal or informal.
2.5 The MS Society acknowledges the Industry's
need to make profits which serve the interests of investors and
provide for investment in future treatments. However, the marketing
agenda of the Industry is not necessarily the same as that of
the charity, and the Society's support for marketing activity
should not be taken for granted.
3. Research, information and publications
3.1 The Society welcomes information from
the Industry of relevance to people affected by MS and to the
Society's research or policy programmes. In general the Society
prefers to deal with information subjected to peer review and
in the public domain.
3.2 Where the Industry seeks access to the
Society's beneficiaries, members or supporters this will be by
communication and invitation to participate from the Society;
lists are not made available. Each proposal is considered separately
and the Society's time and resources are taken into account.
3.3 The Society aims to ensure that people
affected by MS are able to rely on the best available evidence
in reaching conclusions about their treatment. It supports systematic,
scientific investigation including clinical trials where these
will reduce uncertainty, though it does not regard placebo as
the only acceptable form of control.
3.4 The Society is committed by its constitution
to seek publication of research on MS. Where the Society is in
partnership with the Industry publication of results is always
expected, but the Society also encourages the Industry to publish
the results of all research.
3.5 The Society is prepared to enter partnerships
with the Industry in research projects, providing support as appropriate;
a range of involvement can be considered from advisory to co-funding.
3.6 In all research involving people affected
by MS, investigators are expected to adhere to the canons of ethical
and good clinical practice including voluntary informed consent,
as well as prevailing law. The Society is a member of the Association
of Medical Research Charities and observes its research policies.
3.7 The Society has an interest in epidemiology
and population-based research. Because of its extensive databases,
the Society may be able to give particular help with such projects,
subject to appropriate safeguards for individuals and their privacy.
3.8 The Society has particular concern that
the interests of people with MS are adequately recognised when
they participate as volunteers in clinical trials or other human
research projects, and is always prepared to advise the Industry
4. Government, the NHS, the medical and allied
4.1 The Society and the Industry share the
common goal of increasing the resources available for the treatment
and management of MS. There are circumstances in which the Society
will wish to work with the Industry to influence the policy of
government and the NHS, or the attitudes and practices of the
professions. Clarity in goals and methods is expected at the outset
and at stages during joint work.
4.2 Where the Society is working with the
Industry to influence policy and practice it will always be prepared
to disclose this. It will not be acceptable for either partner
to obscure the involvement of the other.
4.3 Media or other public relations initiatives
in pursuit of shared goals are likely to impact on the work and
standing of the Society or of the Industry. They should therefore
be discussed as early as possible within the limits of proper
confidentiality, and note taken of any reservations expressed
by either party.
5. Endorsement and promotion of products and
5.1 The Society supports the availability
of the widest range of treatments, and of informed choice by patients
in consultation with their doctors. Treatments may include medicines,
complementary and/or alternative therapies, lifestyle changes,
surgical or other interventions as well as non-therapeutic products.
5.2 In line with its general policy, the
Society seeks to ensure that its beneficiaries have the most authoritative
and balanced information available on which to base their choices.
It encourages the Industry to co-operate in making this available.
5.3 The Society avoids endorsing individual
products. Reference in the Society's publications or information
services to a particular product by generic or trade name, or
acceptance of advertising where permitted, does not constitute
approval or recommendation of the product.
6. Support of healthcare workers
6.1 The Society is willing to co-fund health
professional posts in collaboration with the NHS and/or the Industry,
through its MS Nurse Fund or other channels as appropriate. We
will not support posts that are part of the marketing strategy
of the Industry.
6.2 To qualify for the Society's support,
any post must have an agreed job description that makes clear
the benefit expected for people affected by MS. The post holder
must be available to the client group agreed and be free from
bias in principle and in practice.
7. Financial and other material support
7.1 The Society welcomes financial and other
material support from the Industry for its work, so long as the
Society's charitable status and independence is not compromised.
In addition to the effects upon the goals and programme of the
Society, the overriding consideration will always be the potential
benefit or disadvantage to people affected by MS.
7.2 When possible, the Society prefers financial
support to be provided via consortia of two or more companies.
Where associated with a publication or event, the Society will
acknowledge support. It will always be prepared to disclose support
even where there is no ready vehicle for making this public.
7.3 The Society recognises the ambivalence
of attitudes towards the Industry among NHS workers, policymakers
and the medical profession, and regards the risk of adverse publicity
as grounds to decline or return donations, grants or other payments.
7.4 The name, marks and reputation of the
MS Society are its property and may only be used by the Industry
with the Society's explicit agreement. In no case will it agree
to their use in order to give one company market advantage over
7.5 The staff of the Society are subject
to strict rules on acceptance of gifts and hospitality. The Industry
is asked to ensure that it does not lead staff to break these
rules accidentally or intentionally; to do so would lead to a
rupture in relations.
7.6 The Society's national headquarters
in Scotland and Northern Ireland, its regions in England and Wales,
and its branches and local units throughout the UK should not
be approached by any company without the prior approval of the
Chief Executive. If direct approaches are received from these
units of the Society, the Industry is asked to first clear them
with the Chief Executive.