Select Committee on Health Minutes of Evidence

Examination of Witnesses (Questions 380 - 399)



  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 in people.

  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 people—potentially the whole population—become 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 on—Dr Naysmith was in the room at the time—about 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 intervention.

  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 effects?

  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 with—I 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 the relationship.

  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 those moneys.

  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 do.

  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 episode.

  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 amount.

  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.

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