Select Committee on Health Minutes of Evidence

Examination of Witnesses (Questions 363 - 379)



  Q363  Chairman: We express our thanks to the second group of witnesses for your co-operation with our inquiry. Could you each briefly introduce yourselves to the Committee?

  Mr Thomson: I am Jim Thomson and I am Chief Executive of Depression Alliance. In the interests of declarations of interest, I should start by making one and that is that although I have been with Depression Alliance for three years, in my immediate previous incarnation I also came into contact with the pharmaceutical industry. I was Director of Fundraising and Marketing for the largest anti-vivisection organisation in this country. Part of my role there was to play an active part in undercover investigations into that industry and its suppliers.

  Ms Hirst: I am Jenny Hirst. I am Co-Chairman of the Insulin-Dependent Diabetes Trust and as such I am a volunteer with no conflicts of interest.

  Mr McDonald: I am Glynn McDonald, Head of Policy and Campaigns at the Multiple Sclerosis Society. I am also a trustee of the Disability Alliance. The Multiple Sclerosis Society provides the secretariat for the All-Party Parliamentary Group on MS.

  Dr Wallace: I am Helen Wallace, Deputy Director of GeneWatch UK, which is a not-for-profit organisation whose aim is to ensure genetic technologies are used in the public interest. Our funding at the moment is largely charitable foundations.

  Q364  Chairman: I think several of you were here for the earlier session. You will probably be aware oaf some of the written evidence we have received and you will have had a chance to look at that written evidence. You will be aware of something mentioned in the previous session, the suggestion that patient organisations are the ground troops of the pharmaceutical industry. I do not know whether any of you feel that that description applies to your organisation?

  Mr McDonald: No.

  Mr Thomson: My organisation has spoken to you several times in this and previous sessions. I do not recognise the organisation from anything I have heard, so, no.

  Q365  Chairman: To be fair to you, may I give you the opportunity to respond to Paul Flynn's comment. As you are aware, he was talking about the specific SSRI issue and suggesting that there had been a courageous campaign pursued by MIND, who receive no contribution from any company, but silence from SANE and Depression Alliance who accept donations. Would you all respond to that? Is that an unfair criticism?

  Mr Thomson: I would love to respond to that. He says in his memorandum that there is worldwide alarm because of the effects of SSRIs. There is not worldwide alarm but there is an investigation ongoing in this country, which I believe is going to report back soon. There was alarm caused by the so-called heroic (I think that was the word he used) coverage by Panorama. May I say for the record that I do not find it particularly heroic when a programme goes to air and the principal resource offered to people that it is going to alarm is a help-line that has been shut for a month. I spent all day the previous day before that programme on Panorama went out trying to get Panorama to put another resource up there and not to broadcast a number that had shut, but there we are. He further says that there has been silence from SANE and Depression Alliance who accept donations. As he well knows, there has not been silence from Depression Alliance. In fact I have written to Paul Flynn on four occasions and he has written back to me on a number of occasions. I gave up the correspondence when it became clear that the points I was making about the role of a charity as opposed to the role of the regulator were falling on deaf ears. It is not Depression Alliance's role to campaign in that way. In fact, a political campaign of that type is strictly prohibited under charity law. We have not been silent.

  Q366  Chairman: You would strongly refute his argument that your organisation has in some way been compromised on this issue?

  Mr Thomson: On five separate occasions, one in person and four in writing, I have asked Mr Flynn to provide one piece of evidence of where my organisation has been in any way influenced by the pharmaceutical industry and he has been unable or unwilling to do so. In fact, for the purposes of the Committee, I have brought a copy of everything that we produce here and I repeat that offer. If anybody can show me one example of pharmaceutical industry bias, and given what I told you about my previous incarnation I suggest I am the last person to not recognise bias, then I am quite happy to offer my resignation.

  Q367  Chairman: We discussed in the previous session the difficulties that some organisations have in functioning without support from the industry. Mr McDonald, what impact would it have on your organisation if the resourcing you receive from the industry was no longer available?

  Mr McDonald: The effect would not be so much upon our organisation as upon people with MS. May I explain the way in which we receive money from the pharmaceutical industry? Our turnover is about £28 million a year. We are involved with a scheme which receives donations from three manufacturers of disease-modifying drugs for people with MS where those companies each put in £350,000 over three years, which is matched by £350,000 from the MS Society. We act as an independent administrator for that money. It goes direct to the NHS to fund MS nurses. That arose out of the risk-sharing scheme for provision of disease-modifying drugs. The Department of Health wanted the industry to contribute towards development of infrastructure for delivering those drugs. At the request of the Association of British Neurologists and the UK MS Specialist Nurses Association, the Society stepped in and offered to act as an independent broker for that money to put a gap between individual companies and individual nurses. If that money was withdrawn, the effect would not be on our organisation because we do not actually benefit from that money directly; it would be on people with MS who would have less access to MS nurses.

  Q368  Chairman: Do you think that more could be done to develop that kind of principle whereby there is not the direct connection between the patients' organisation and the company? Have you other ideas on how that might evolve?

  Mr McDonald: I think what causes some discomfort, and there are numbers of specialist nurses around, is the idea that there might be direct link between those individual practitioners and individual companies. We were quite happy to act in the role which was requested of us, to act as an independent intermediary. If I can give you an example of how that works, we receive the money from the companies; there is then an advisory panel which decides where the money should go. There is a bidding process and a panel decides in which areas that money should be allocated. There is no drug company representation on that group, and so there is no suggestion that nurses are being put in areas where the drug companies see an opening for their market. They are going to places purely decided on the basis of need.

  Q369  Dr Naysmith: This question is to Helen Wallace. The issues that GeneWatch is concerned with tend to be technical and have a different kind of applicability to what we have been talking about this morning, the side-effects and so on, and very laudable they are. Do you think they are of concern to any other patient organisations? Have any other organisations come in behind you on that?

  Dr Wallace: Yes. We have done some work with the Consumers' Association, for example, on the direct marketing of genetic tests to members of the public. Our particular concern and the issue I have raised in my submission is about healthy people; it is not so much about patients but about disease mongering, if you like, to people who are told they are at risk of becoming ill in the future. One of our concerns is that there is not an organisation really that will represent the views of those people in government policy or in regulation and that we therefore need to consider new mechanisms to get the broader public involved in this debate.

  Q370  Dr Naysmith: have you ever come across any opposition from patient organisations or consumer organisations to the kinds of thing that you are doing with the idea that you might be blocking progress for them or their supporters?

  Dr Wallace: We have been criticised by one of the patient organisations, the Genetic Interest Group, yes, for work that we have done.

  Q371  Dr Naysmith: What sort of group is that?

  Dr Wallace: They represent groups of people with genetic disorders mainly, a collection of different charities. They do play a role in a lot of consultative meetings and they do take pharmaceutical industry funding.

  Q372  Dr Naysmith: Do you think the pharmaceutical industry has any role to play in this kind of negative criticism?

  Dr Wallace: I can certainly say that the industry is not happy with the kinds of things that we are advocating in terms of regulation of genetic tests. They have told me, of course, that they are opposed to increased regulation of genetic tests. I am not aware of any action that they have specifically taken to try to prevent us from raising these issues.

  Q373  Dr Naysmith: Could I turn to Mr McDonald and mention something from your submission? The Society states: "Where the Society is in partnership with the industry, publication of results is always expected." Why do you think that is so important?

  Mr McDonald: That is purely for reasons of transparency. With any research which we as an organisation finance, and at the moment we have about £12 million of research commitments, it is an absolute that all the results of those trials or research projects are published. We would expect that to apply if we did any joint work with the pharmaceutical company. Equally, we would expect it if it was something being done entirely independently by a pharmaceutical company. We want publication of all results of research.

  Q374  Dr Naysmith: Would you take that as far as terminating your partnership with a pharmaceutical company if it refused to publish something, and publish something in a timely way as well?

  Mr McDonald: In practical terms, that would happen before any joint work took off if it became apparent that there were any kinds of restrictions on publication. Once we had set out an agreement, if it then appeared that there was a reluctance to publish, we would not continue with that arrangement.

  Q375  Dr Naysmith: Turning to Jenny Hirst now, you have been quite critical in your submission and you suggest that the commercial influence of the industry and the culture of secrecy in UK drug regulation leads to "largely poor quality research". What do you mean by that? Can you justify that statement? Why is the research of poor quality?

  Ms Hirst: Relying on the evidence of the Cochrane reviews, which we certainly class as independent and good quality reviews, for insulin, for instance, the genetically-produced insulin, at least 80% of the research was funded by the drug industry and both Cochrane reviews have shown that it was methodologically poor. It has not it looked into the long-term effects of the insulin and obviously for people with diabetes that is key. It concerns us that this sort of research has been relied upon for the approval of drugs and for people to make decisions upon.

  Q376  Dr Naysmith: Yet there have been some amazing advances in using different forms of insulin in diabetes compared with even 10 or 15 years ago.

  Ms Hirst: Have they, in fact? There is really not the evidence to show that. What we have actually got now are genetically-produced insulins where there is no evidence to show that they are better or more reliable, but they are far more expensive. The cheaper animal insulins, which have a long history of safety, are not even advertised and doctors and diabetes specialist nurses tend to think that animal insulins are not available any more because they are not advertised, again an influence that the drug companies are having.

  Q377  Dr Naysmith: Would you tend to say that these influences are such that drug regulation is failing to protect and promote patients' health? Is that a statement you would agree with? If things were better regulated, it would be better for your patients?

  Ms Hirst: Yes, and I am unhappy about the relationship between the drug companies, the MHRA, and the role that patients cannot play in all of that.

  Q378  Dr Naysmith: How would you rectify the situation? What would you expect your organisation and other patients' organisations to do to improve this? What would you be able to do?

  Ms Hirst: What would we like to be able to do? We would like to be better represented within the regulatory authorities; to ensure that there is greater transparency; be allowed, as it were, to look at the research properly; to have access to the yellow card scheme and the adverse reaction reports and be able to report. I realise that that is supposed to happen, that patients are going to be able to report, but I think patients need all of that information. They need to be able to access it if that is what they want.

  Q379  Dr Taylor: May I go on along that tack just for a moment? You are content that there is no advantage of the genetically-produced insulin over the others and the only rationale for them is that they make more money for the drug firms? Am I over-stating you?

  Ms Hirst: You are over-stating me. A wide variety of insulins need to be available to suit all needs, but what we have now got is increasing pressure from the industry to make us believe that the genetically-produced ones are better for everybody, which I do not believe.

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