Select Committee on Health Minutes of Evidence

Memorandum by Mr Paul Flynn, MP (PI 38)

  This Memorandum is relevant to the following terms of reference:

    —  Provision of drug information and promotion.

    —  Professional and patient education.

  The Committee's decision to undertake this inquiry is warmly welcomed. This brief report is intended to add to and to support fully the submissions to the Committee by MIND and Charles Medawar.

  The focus of this memorandum is the relationship between pharmaceutical companies and patients' organisations and lack of regulation of this relationship. These relationships have developed partly as a consequence of legislation preventing "direct-to-consumer" advertising and need of pharmaceutical companies to find other means of marketing medicines. They are driven by the demand for profits in an increasingly competitive sector. The ban on "direct-to-consumer" advertising should remain in place.

  While on the surface this relationship appears to be "win-win" for both parties, the power undoubtedly lies with the pharmaceutical companies, who according to the Association of the British Pharmaceutical Industry (ABPI), are worth almost as much as North Sea oil to the UK economy.[1]

  There are very serious concerns that pharmaceutical companies are using patient's organisations as conduits to promote their products in a subtle form of marketing. There is a complete lack of transparency in the regulation of these relationships and few formal legal requirements. Instead of representing the interests of patients, groups in some cases have become marketing tools for the pharmaceutical companies and this raises serious concerns about their credibility.


  The Consumers' Association estimates that there are more than 200 national patient organisations and support groups in the UK.[2] Medical research charities and groups representing particular medical conditions receive around 25% of total donations made each year from all donors.[3] A substantial amount of this money comes from pharmaceutical companies and is used for a number of purposes including the funding of leaflets and sponsorship of campaigns. Patients' organisations perform many roles including providing information to the general public and representing those who suffer from a particular medical condition. Increasingly they are campaigning bodies, fighting for access to a particular drug. Naturally this coincides with the interests of the producers of drugs.

  A survey[4] carried out to illustrate this memorandum gives a snapshot of the extent of this relationship and how the money is used. Many of the groups contacted provide support for All-Party Groups within the House of Commons, which is another area of concern within this broader topic. The groups supporting APPGs do not have to declare their interests and given that many of them have links with pharmaceutical companies, there is a danger that it is an indirect form of lobbying for those companies.

  The survey revealed a number of concerns about this financial relationship and the way it is regulated or rather the way it is not regulated. Each organisation was asked for details of the funds it received.

Receipt of funding from pharmaceutical companies

Stroke Association
National Osteoporosis Society
Arthritis Care
Alzheimer's Society
MS Society
Migraine Action
Alcohol Concern
Cancer BACUP
British Lung Foundation
Breakthrough Breast Cancer
Motor Neurone Disease Association
Haemophilia Society
Action for ME
Diabetes UK
National Kidney Federation
Muscular Dystrophy Campaign
Young Minds
Depression Alliance
National Autistic Society
British Heart Foundation

  The vast majority of organisations do receive donations of varying amounts, although a handful did not accept donations from pharmaceutical companies.[5] In its response, Young Minds, a charity supporting young people with mental problems stated, "It is YoungMinds policy not to enter into financial partnerships with Pharmaceutical companies. This enables the organisation to maintain its independence and avoid any possible instances of compromise."

  A similar survey carried out by Patient View for HSC News found that 76% of EU-based patient groups received funding from pharmaceutical companies to pay for occasional projects.[6]

  Many organisations who declare funding from pharmaceutical companies do so along side a policy document governing the relationship.

  The extent to which these organisations revealed the identity of the donors varied a great deal. Some merely printed their names and donations were recorded as a total. There was only one case where the individual donations of each company recorded.[7] One organisation, SANE, was "reluctant to provide company names due to the Data Protection Act,"[8] and another explained why it did not publish detailed accounts by saying, "this would embarrass the smaller supporting companies by way of comparison."[9]

  Interestingly, the HSC News survey recorded that 14% of EU-based groups declared using revenue from pharmaceutical companies for core costs, which suggests the survival of groups is not dependent on the support of these companies.[10] There would therefore be no disadvantage in fully declaring funding or perhaps being more circumspect in accepting it in the first place.

  While the mere act of receiving money from a company does not necessarily lead to a group being used by a pharmaceutical company or having questionable independence, there are examples of groups who have not been critical of their sponsors when products have been found to be ineffective. A major part of the problem is that many of the links are not clear.

    —  The Alzheimer's Society, which campaigned strongly for access a drug called Aricept and cost the NHS £39 million a year. A study paid for by the NHS found the drugs to be ineffective. In response to this, a statement was released by the drugs' companies which went out in the name of the Society. The Society does receive funding from these companies.[11]

    —  The Impotence Association, which campaigns for wider availability of impotence treatments. It receives funding from Pfizer, the makers of Viagra, for its website, which makes no statement of editorial independence.[12]

    —  A public relations agency called Phase IV contacted me via e-mail in July 2004 asking for my views on a campaign they were putting together to increase funding for anti-TNF drugs used for the treatment of arthritis. The campaign proposal included plans to contact patient groups to demonstrate the worth of anti-TNF drugs. It later transpired that the agency would be seeking support for this from pharmaceutical companies and had already approached the National Rheumatoid Arthritis Society. Regardless of the fact that doubts surround the effectiveness of anti-TNF drugs, this highlights the role of PR agencies in acting as a third party for pharmaceutical companies, adding a further shade of grey to an already unclear situation.

    —  There is world wide alarm because of the effects of the Selective Serotonin Uptake Inhibitors and allegations that information from clinical trials has been suppressed. A courageous leading campaign has been pursued by MIND who receives no contributions from any pharmaceutical company. There has been silence from SANE and Depression Alliance who accept donations. I have been in contact with all three organisations. There are grounds for suspicion that, at best, donations may have an inhibiting effect on the two latter groups. This may explain why they have failed to add to the concerns eloquently expressed by MIND.

    —  Following the suicide of a constituent who was using the drug Roaccutane for persistent acne, I investigated the alleged link with the use of the drug and other suicides. While no causal links have been established there is widespread international concern. A newspaper alleged that an Acne patients group failed to act on behalf on their clients to investigate any possible link. They also alleged that the group received a substantial annual grant from the company that produces Roaccutane.

  Some groups have been critical of their sponsors, although examples are few and far between. The National Kidney Federation, in response to the survey detailed on page, reported that it had been critical of some of its sponsors and supported the introduction of generic drugs, which would have a serious effect on the market share of those sponsors.[13]


  The regulation of charities with regards their relationship with pharmaceutical companies lacks transparency and is fundamentally flawed.

  While the Charities Act 1992 charges trustees with the responsibility of deciding whether donations are in the charities' interests, this specifically relates to the financial position of the charity. Patient's organisations share the same interests of pharmaceutical companies, so in general refusing funding would be difficult.

  Although charities with an income of over £10,000 per annum are required to submit accounts to the Charity Commission in a defined format, a representative of the Commission confirmed that "the requirements to provide information on the source of donations are less stringent than those relating to the expenditure of the charity."[14]

  There is no requirement to publish the names of all donors and how much they have contributed as was noted on page 3. "Under the charity accounting regulations (SORP) there is no general requirement for charities to disclose the sources of their donations."[15] Transparency is lacking because there is no legal requirement for it. The Charity Commission and other similar bodies can only really contribute in an advisory role to how this relationship is regulated.

  The Long Term Medical Alliance (LMCA) is an umbrella body of patient organisations. It publishes guidelines for groups to consider in their dealings with the pharmaceutical industry. The LMCA has no way of enforcing or monitoring this. "To make them work, however, would need monitoring, enforcement, and sanctions, with compliance as a condition of membership of the alliance—a distant hope."[16] This lack of transparency is confirmed by the findings of the HSC News survey, which found that only 26% of UK based groups surveyed had drawn up a "conflict-of-interest" statement.[17]

  Equally, the Institute of Fundraising publishes a code for its members, which it expects them to adhere to. It recommends as best practice to establish a policy of working with companies and recognises that "In this competitive age the reasons for a company wishing to work with a charity are seldom purely philanthropic."[18]


  As mentioned in the opening paragraphs, pharmaceutical companies face limits on advertising and patients' groups offer a platform to reach members of the public. Patient groups campaigning for disease awareness or the availability of latest drug inevitably attract such interest. Consequently it pays to support these groups and in some cases companies have gone as far as creating a group. "In 1999 Biogen set up Action for Access in their effort to get the NHS to provide interferon beta for multiple sclerosis."[19] This promotion was stopped as it breached guidelines.


  Pharmaceutical companies in UK are governed by, among other things, the Medical and Healthcare Regulatory Agency. One of its roles is to regulate the promotion of drugs, but its approach to breaches is to seek a negotiated resolution in the majority of cases. The emphasis is very much on self-regulation and it is well-documented that the MHRA is populated by people with links to pharmaceutical companies[20] and is funded 100% by the industry. Little mention appears to be made of patients' organisations specifically and this leads to the suspicion that there is a gap between two different types of bodies governed by their own codes.

  The ABPI publishes a code of practice, but again the emphasis is on self-regulation. Complaints are dealt with by a separate body, The Prescriptions Medicines Code of Practice Authority (PMCPA). The code governs advertising and sponsorship, but again it is self-regulatory and has very little to say about relationships with patients' organisations and individual donations. Out of a board of 12, six members belong to the pharmaceutical industry. In 1994, the Health Select Committee reported that, "We are not convinced that the present voluntary code is being rigorously applied."[21]

  The ABPI itself recognised the value of relationships with patients' organisations. During a campaign in 2000 to relax direct-to-consumer advertising within the EU, it described its battle plan as "to employ ground troops in the form of patient support groups, sympathetic medical opinion and healthcare professionals. This will have the effect of weakening political, ideological and professional defences."[22]

  The PMCPA publishes notes of each case it considers and sent a selection of those mentioning patient groups. They highlighted that PMCPA only really considers advertising and sponsorship, and does not extend to individual donations or the regulation of relationships. A few examples can illustrate both the influence of pharmaceutical companies and the limited role of the PMCPA.

    —  Case AUTH 498/2/97 Consultant Psychiatrist v Bristol-Myers Squibb

  Allegation that a booklet for Depression Alliance supported by Bristol-Myers Squibb was a subtle advert for a drug called Dultonin. The drug was not mentioned by name and the complaint was dismissed. Even so, this is illustrative of the relationship and the concern of a lack of transparency,

    —  Case AUTH 1455/4/03 General Practitioner v Pharmacia

  Complaint that a campaign called the Public Health Education Campaign sponsored by Pharmacia constituted direct advertising. The campaign had the appearance of a public health campaign and involved two patient organisations, The Continence Foundation and Incontact. A specific drug was not mentioned, but patients were encouraged to consult their doctor. While the complaint was dismissed, it was noted that a phone line established as part of the campaign failed to declare the involvement of Pharmacia and was misleading. Again, this illustrates the problematic nature of this relationship.

    —  Case AUTH 1316/5/02 Novartis v Fujisawa

  Novartis complained that Fujisawa had been involved in a promotional article in the magazine of the National Kidney Foundation. The article was drafted by Fujisawa's public relations agency and no declaration of Fujisawa's involvement was made. This was found to be a breach of the code, but the complaint itself was dismissed.


  Self-regulation of a one-sided, unbalanced relationship is flawed. While it might be argued that philanthropy is a private affair, the increasing role of patient organisations in providing services and campaigning and the power of pharmaceutical companies' demands reform. Measures should be considered to increase transparency and accountability and guarantee a greater measure of independence of patients' organisations. The Draft Charities Bill offers an opportunity to clarify the regulation relating to funding relationships where it states, "The Home Secretary would be given power to introduce statutory regulation of fundraising if he deems self-regulation to have failed."

    —  Mandatory requirement for patients groups to publish a policy (conflict-of-interest) document detailing their approach to relationships with corporate donors.

    —  Mandatory requirement for patient groups to publish all donors and their donations.

    —  Codes of practice should be amalgamated and made a compulsory requirement of registered charities. Monitoring of this code should be carried out by an independent body, possibly the Charity Commission.

    —  Require all groups who support APPGs in the House of Commons to declare their interests.

    —  Mandatory requirement for pharmaceutical companies to publish a policy document detailing their approach to relationships with patient organisations.

    —  Mandatory requirement for pharmaceutical companies to publish all donations made and recipients of those donations.

    —  Reform of the regulatory bodies of pharmaceutical companies to establish them as completely independent of vested interests and strengthen their powers and scope of responsibility to enforce mandatory requirements set out above.

    —  Increase public funding for independent sources of health information.

1   "Pharmaceutical Industry trade surplus higher than expected" ABPI press release 19 May 2004. Back

2   "Who's injecting the cash?" Consumers' Association April 2003. Back

3   "The eccentric world of British philanthropy" The Independent Maxine Frith and Nigel Morris 28 May 2004. Back

4   Survey carried out through my office by writing to a selection of patient groups chosen at random. Back

5   These included the Muscular Dystrophy Campaign, Young Minds, Action for ME, Alcohol Concern, MIND. Back

6   "Fundraising and the growth of industry involvement." HSC News Issue 6 April 2004 Published by Patient View p 29. Back

7   Alzheimer's Society. Back

8   Letter from Chief Executive of SANE April 2004. Back

9   E-mail from Chief Executive of National Kidney Federation June 2004. Back

10   "Fundraising and the growth of industry involvement." HSC News Issue 6 April 2004 Published by Patient View p 26. Back

11   "Alzheimers' drugs a waste of money, says NHS study" Sarah Boseley, The Guardian 25 June 2004. Back

12   "Who's injecting the cash?" Consumers' Association April 2003. Back

13   E-mail from Chief Executive of National Kidney Federation June 2004. Back

14   "Funding of charities/patient groups" Dr Kate Haire Science and Environment Section House of Commons' library. Back

15   Letter from Director of Policy and Strategy at the Charity Commission. Back

16   "Relationships between the pharmaceutical industry and patients' organisations" Andrew Herxheimer BMJ 2003;326:1208-1210 (31 May). Back

17   "Fundraising and the growth of industry involvement." HSC News Issue 6 April 2004 Published by Patient View p 59. Back

18   Institute of Fundraising Codes of Fundraising Practice 2004 p 16. Back

19   "Relationships between the pharmaceutical industry and patients' organisations" Andrew Herxheimer BMJ 2003;326: 1208-1210 (31 May). Back

20   A survey of the Annual Report 2002 of the MHRA found that of the 34 members of the main committee, 17 declare personal interests, which include having received travel expenses, fees, employment as consultants and the ownership of shares. 14 of the 34 declare non-personal interests such as the receipt of research grants. All the main pharmaceutical companies are represented, from Astra Zeneca to Roche and the trend continues through the various sub-committees of the CSM. Back

21   House of Commons Health Select Committee. Back

22   "The Mark of Zorro" Michael Jeffries Pharmaceutical Marketing May 2000. Back

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