Memorandum by Multiple Sclerosis Society
(PI 25)
1. INTRODUCTION
About MS
1.1 MS is a condition which affects the
central nervous system (the brain and spinal cord). Its effects
include problems with mobility and speech, extreme fatigue, pain,
continence and cognition. With many people diagnosed in their
twenties or thirties, employment or other useful occupation is
a key issue in their lives.
1.2 There are an estimated 85,000 people
with MS in the UK. There is currently no cure.
About the MS Society
1.3 With nearly 45,000 members the MS Society
is the largest organisation in the UK representing and working
for those affected by MS. We estimate that we represent over one-third
of all people with MS in the UK.
1.4 We provide a range of services to people
affected by MS including helpline, website and information services,
and personal support through our network of 360 local branches.
We fund both scientific and service improvement research, and
provide pump-priming funding for such things as MS nurses.
1.5 Provisional figures for 2003 indicate
that the Society's income was £28 million. The broad division
of income was £12 million donations, £8 million legacies,
£8 million grants and other income. Details of contributions
received from pharmaceutical companies in 2003 are given in Annex
A.
2. SUMMARY
— The MS Society values its relationships
with the pharmaceutical industry, which we believe in help us
achieving our charitable objectives.
— Any financial arrangements between
the Society and the pharmaceutical industry are conducted within
a clear and transparent framework.
3. DISCUSSION
3.1 As an organisation our role is to support
people affected by MS and represent their interests. Our relationships
with people affected by MS and other stakeholders depends crucially
on our independence. It is important that we are both independent
of all outside interests and perceived to be so.
3.2 We have been aware for some time of
the need for particular transparency in our relations with the
pharmaceutical industry. In 1999, after a lengthy consultation
with pharmaceutical companies and other MS charities the Board
of the MS Society approved a document Relations between the
MS Society and the Pharmaceutical Industry, which forms the
basis of our interactions with the industry. A copy of the document
is at Annex B.[23]
3.3 Our relations with the pharmaceutical
industry are generally constructive. Most differences tend to
be small scale, resolved informally and in private. However, we
do not shy away from a more public approach if we believe it to
be necessary. In 2000 we reported a manufacturer of MS disease-modifying
drugs to the Medicines Control Agency (MCA) for what we believed
to be a breach of the Medicines (Advertising) Regulations 1994.
The issue related to advertising promoting access to drugs which
seemed to us to constitute direct to customer marketing. In the
event the MCA concluded that the nature of the advertisement in
question was not covered by the advertising regulations.
3.4 We have in the past published a statement
on our relationship with pharmaceutical companies and the detail
of donations received from them. We did not publish this in 2002
(though the full details of the nurse scheme mentioned in Annex
A were made public through a press release at the time of its
launch). However, in view of the increasing interest in the relationships
between medical charities and the pharmaceutical industry we intend
to reintroduce this section in our 2003 Accounts.
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