Examination of Witnesses (Questions 380
THURSDAY 25 NOVEMBER 2004
Q380 Dr Taylor: You would agree they
are better for some people?
Ms Hirst: They are for some people,
but not for everybody.
Q381 Dr Taylor: What is the incidence
of the inability to take the genetically-produced insulins?
Ms Hirst: What we know is that
30,000 people, which is about 10% of people requiring insulin,
are still using animal insulins but I come back to the evidence.
The research has not been done so we do not know. There have never
been long term comparative trials, for instance, to show the difference
Q382 Dr Taylor: Has any work been
done on why these 30,000 cannot take it?
Ms Hirst: No, and that is even
worse, is it not?
Dr Taylor: Yes, it is.
Q383 Dr Naysmith: There is also the
question that, if you are using pig insulin, you run the risk
of organisms which might be there in the animal insulin which
will not be there in the genetically produced stuff.
Ms Hirst: There is no evidence
of that at all. Animal insulins are as highly purified as the
so-called human insulins.
Q384 Dr Taylor: "Disease mongering"
is a very good phrase because we seem to be in a position where
patient awareness groups, illness awareness groups, are fostering
the climate where one could get into a state where you are worried
about your blood pressure, your weight, your cholesterol. Would
you comment on this?
Dr Wallace: Our particular concern
is that that is likely to expand in future. There is a definite
shift towards treating risk factors rather than diseases and clearly
that can be beneficial in some circumstances, but what we are
seeing with proposals to use genetic tests in particular to expand
those risk groups is a system in which the tests themselves are
not properly assessed. There is no mechanism to assess whether
or not the test is useful to decide who should take a particular
medicine. There is no mechanism to assess whether the test is
valid, whether it is linked with the risk of disease that is claimed.
There is no regulation to prevent direct sales to consumers or
direct advertising to consumers. It is therefore certainly possible
that this becomes a route by which large numbers of peoplepotentially
the whole populationbecome convinced that they are at genetic
risk for common diseases and need to take medication. There is
clearly an interest from the pharmaceutical industry in using
these types of tests to expand the market for medication.
Q385 Dr Taylor: Your submission is
a great help. You have told us the questions to ask potential
witnesses. You have made a whole string of recommendations which
I think we will certainly follow up. Does anyone else want to
come in on the disease mongering?
Mr Thomson: This is something
that is often mentioned in the context of depression. I would
like to establish that context because, without harping back to
Mr Flynn's evidence, I had a conversation earlier onDr
Naysmith was in the room at the timeabout the incidence
of depression and its status. Mr Flynn mentioned then that in
his view there was a handful of people in this country suffering
from serious depression and the rest were the worried well, created
either by the pharmaceutical industry or by me and my evil organisation.
I would like to correct that and to establish the context for
the illness. Mr Flynn also mentioned that the WHO predicts that
by 2020 depression will be the third biggest burden on health
services worldwide. He misquoted because it is the second biggest
by 2020. It is a serious, enduring mental illness and my organisation
certainly does not need to disease monger to realise the job that
we have on combating depression. I wanted to establish that, in
the view of the Committee, there is a reason for me being here
and that reason is that the condition exists.
Dr Naysmith: Mr Thomson referred to a
meeting that took place in the House of Commons. I was indeed
in the room but I think I had a position somewhere in between
him and Mr Flynn, which is occasionally the case.
Q386 John Austin: On the depression
issue and the role of your organisation and its relationship with
the pharmaceutical industry, can I ask whether your Alliance accepts
that there is some risk of dependence on SSRI anti-depressants
and whether you have alerted your membership to that risk or are
you more fearful of dissuading people from taking medication?
Mr Thomson: Absolutely not. We
support all therapies being available. We publicise information
about all therapies fairly equally. Our most recent publication
was on cognitive behavioural therapy which is a non-pharmaceutical
Q387 John Austin: Have you specifically
issued warnings about the possible risk of dependency on SSRIs?
Mr Thomson: I have brought all
our publications with us and one of them is called Depression
and Antidepressants. That issue is specifically covered in
that publication so it is quite wrong to say that we have not
alerted people to that risk.
Q388 Dr Taylor: Certainly diabetes
is one thing that you do need to be aware of and promote. Have
you any comment?
Ms Hirst: Yes. People with diabetes
are prime targets for drugs for cholesterol, obesity and blood
pressure. I do have concerns that the easy way out is to take
a pill, whereas to eat sensibly and exercise, the standard line,
is vital. I do worry that pills will be pushed as an easy option.
I think we all worry about that.
Mr McDonald: There are tight and
specific diagnostic processes around MS. It is not something which
is susceptible to disease mongering.
Q389 Dr Taylor: Can I go back to
Helen Wallace? Obviously the genetic approach is going to be good
for some patients. Could you tell us the sorts of groups that
it is going to help?
Dr Wallace: There are examples
already of genetic tests obviously in use in diagnosing genetic
disorders, which is clearly beneficial, but there are familial
forms of some common disorders, familial cancers, and the most
obvious example is the BRCA test associated with risk of breast
cancer, which can be useful to some women from high risk families
who want to know their risk. That is why we are arguing for regulation.
I am not saying that these tests are bad in general. There will
be some circumstances where they are useful to some people but
they are going to be much more questionable for use in the general
population across the board.
Q390 Dr Naysmith: Because of misuse
of inadequate information now, things are being marketed too soon.
As someone who has studied genetics in the past, it seems to me
it will be possible one day, I suspect, to identify individuals
who will benefit from specific treatments and drugs. It may be
multifactorial in lots of ways and polygenic as well but we will
get there one day. Would you agree that it is possible that we
will get there one day?
Dr Wallace: I would agree that
the number of useful tests will expand. The jury is still out
and in some ways it is not totally relevant to the decision about
assessment but, as to what extent it will be useful, say, to scan
the genomes of everybody in the population, I would argue that
there is enough data already on some diseases to show that that
is not going to be useful, for example, for trying to find out
who is genetically susceptible to lung cancer. We know there is
not a significant genetic component to that disease and I think
the potential has been generally exaggerated. In terms of regulation,
it is irrelevant what side of that debate you come down upon because
you can still agree that the tests should be assessed.
Q391 John Austin: You suggest in
your evidence that this focus on drug based and diagnostic approaches
may lead to reduced funding for other health issues. Do you think
there is a role for patient organisations to help the government
and other agencies in putting the genuine contribution of the
pharmaceutical industry into perspective in relation to other
interventions like leading healthy lifestyles and other public
health measures? Is there a danger that there may be a switch
of resources away from public health measures?
Dr Wallace: Yes. If we look at
the situation at the moment as analysed to some extent in the
Wanless reports and in work by the Health Development Agency,
a very tiny proportion of medical research is spent on public
health interventions so the Health Development Agency found something
like 0.4% of research output in terms of publications was looking
at those very important public health interventions which, as
your Committee knows from its reports on obesity and tobacco,
are the things that are going to make the difference. The reason
for that is that funding tends to follow the priorities of the
pharmaceutical industry and of patients that need treatment and
not look at these other priorities in terms of prevention. I would
argue it is not so much patient groups but perhaps new mechanisms
to involve the broader public in decisions about research that
would help to counter that. There has been a step towards that
in the new science strategy that has been published, which does
advocate public involvement, but it advocates public involvement
very much at the end of the pipe to look at how new technologies
might be applied and what the risks are. Many organisations, including
ours, are arguing we should shift that involvement upstream to
make decisions about research funding and what the priorities
should be that involve the public as well as scientists.
Q392 Dr Taylor: You all represent
a number of patient organisations. Have you ever felt that financial
dependence on the pharmaceutical industry has produced adverse
Mr Thomson: The interesting thing
there is financial dependence. It implies a passivity in the relationship
and we are in no way passive in our relations withI hesitate
to use the words "the pharmaceutical industry" because
I have no encounters with the pharmaceutical industry. I have
encounters with a number of companies who are in competition with
one another. This idea that it is an industry that is seeking
to influence me I do not recognise. The reality is that in an
ideal world we would probably like to rely, which we do, on far
less funding from companies within that industry but unfortunately
my organisation exists in the real world, not the ideal one. Government's
core funding of our organisation does not pay the rent on the
building, let alone any staff, the lights etc, and it is not a
grand building. In fact, one year it was voted the ugliest building
in London. The fact is that we do rely on that but we are very
careful in those relationships and we do not accept money from
the pharmaceutical industry; we aggressively seek it. There is
a fundamental difference because that gives us an equality within
Q393 Dr Taylor: Would you agree with
the witness in the last session who said she was quite confident
she was not influenced?
Mr Thomson: We have two separate
policies on fund raising, one generally, which I will not bore
you with because the core of it is repeated in the second one,
which is regarding funding from the pharmaceutical industry.
Q394 Chairman: If you could leave
that with us, that would be excellent.
Mr Thomson: What it points out
is that as a charity we are bound by what we can and cannot accept.
If there are no strings donations, there are only two very tight
conditions under which we can turn down a donation. That pertains
to other organisations as well in the charity sector. I do wonder
why that question has never been asked of people who overtly broadcast
the fact that they do not accept any industry funding because
that leaves their trustees quite liable.
Q395 Dr Taylor: As a charity, you
have to accept donations?
Mr Thomson: There are two conditions
under which we can turn them down. Those conditions are if there
are strings attached or if, by accepting it, we would prejudice
other funding areas so if it would blacken the name of the organisation.
Were we to only be accepting money from one company I would feel
quite happy about turning it down on that basis because we would
be seen to be favouring one over another. We do not do that and
I am quite happy that we do not risk the charity's name by accepting
Ms Hirst: I would totally agree
that a charity can grow, develop and reach more people if it accepts
pharmaceutical industry money, but we are set up with a deliberate
policy of not accepting pharmaceutical industry money. That is
because we have problems with industry and its influence. We also
felt that in order to represent the people we do represent we
could only do that if we remained independent. You cannot criticise
the pharmaceutical industry and specific drug companies and take
their money at the same time, or I do not feel you can, and we
as an organisation do not feel you can. The other point that we
feel quite strongly about is that it is how the public see you
which is that you can be as independent as you like and make judgments
you like if you accept pharmaceutical industry money, but if you
see adverts that are for a charity alongside a major drug company
the general public on the whole think there is an link and you
are giving approval to a product, not something any charity should
Q396 Dr Taylor: Where does the bulk
of your funding come from?
Ms Hirst: People and legacies,
the general public. I fully accept that that limits us and we
never did set out to be Diabetes UK as employing 164 people. I
still think that charities like us can do a worthwhile job without
accepting pharmaceutical industry money.
Mr Thomson: By accepting or seeking,
as we do, pharmaceutical industry funding we are then gagged and
not able to launch campaigns that would adversely affect the income
of those companies. Our most recent campaign does exactly that.
We had a conference last week looking at the issues around parallel
trade, counterfeiting and online pharmacies, all serious topics.
One of the outcomes from that conference which was covered in
The Telegraph on Monday this week is that we will be lobbying
industry to look at tamper proof packaging of their products and
that will cost the pharmaceutical industry a great deal of money,
running into several billion dollars no doubt because they will
have to retool all their production facilities to produce their
medicines in tamper proof packaging. That is an issue of patient
safety and that is where we are coming from. The fact that it
adversely affects companies that fund us is neither here nor there
in terms of patient safety. That is what we need to do, so we
do it. If we compromise our funding, so be it.
Q397 Dr Taylor: The MS Society is
obviously a very large society that needs a lot of money. Do you
think you have been influenced? Tell us about the beta interferon
Mr McDonald: I would agree with
Jenny that as a voluntary and membership organisation one of our
most prized assets is our reputation for independence. In terms
of the relationship with the pharmaceutical industry that rests
on three things. The first is transparency. Our accounts set out
where money has come from, from individual pharmaceutical companies.
The second is our code of practice which is appended to our evidence
and freely available. The third is in terms of accountability.
We have 45,000 members, 30,000 of whom have MS which means that
over a third of all people with MS in the UK are members of our
society and we are accountable through an elected board to them.
On the access to beta interferon campaign, that has to be set
in the context of our overall activities: millions of pounds'
worth of our own research commitments, 350 branches across the
UK, a helpline, £1 million of individual support grants every
year. That is the context for our activities on beta interferon.
It is probably worth me going back over some more figures which
were not included in the evidence. In the two years to the decision
on providing the disease modifying drugs the MS Society received
a total of £18,000 from manufacturers of those drugs, set
against an income in those two years of £53 million.
Q398 Dr Taylor: It is a very small
Mr McDonald: It is a very small
amount. There was a reference earlier to voluntary organisations
being described as the ground troops of the pharmaceutical industry.
We are not that but we would unashamedly be regarded as the ground
troops for people with MS. It is on that basis that we undertook
the campaign for access to beta interferon, to put those people
on an equal footing with people with MS who lived in France or
Germany, where those drugs are readily available.
Dr Wallace: The industry operates
at a bigger level than the level that came up in the earlier questions
in terms of selecting who gets money in the first place. We have
talked about whether individuals are affected in terms of how
they respond to industry pressure, but those organisations and
those individuals are selected as part of an industry strategy
to promote its own aims. For example, it is perfectly legitimate
for patient charities to campaign for earlier access to new medicines
and that is something which coincides with the pharmaceutical
industry's interests but that kind of work will inevitably get
more funding from the industry than work that is against the pharmaceutical
industry's interests. I think that is really where the system
gets distorted and where the priorities get distorted, rather
than in individual caving into pressure or that kind of development.
Q399 Dr Taylor: You would agree tighter
regulation is needed?
Dr Wallace: Yes.