EUROPEAN PATIENTS' FORUM

  On 31 January 2003, responding to calls by the European Commission and other EU institutions for one pan-European patient body to address and be consulted on issues concerning the interests of patients, l2 pan-European patient organisations came together in Brussels to create a common platform, the European Patients' Forum[1].

  The main published objectives of the Forum are:

—  To facilitate an open and inclusive Patients' Forum enabling all pan-European patients' groups to exchange information and points of view in the area of EU Health Policy and all other EU initiatives of interest or concern to patients.

—  To share health experiences and examples of good practice in order to strengthen the role and voice of European patients' organisations.

—  To offer the views of patients, as external stakeholders in the European healthcare debate, by means of a broad, truly representative and independent patient group resource.

—  To provide a forum for patients' organisations to develop common positions on European health policy issues and to lobby on behalf of those organisations, giving them a central position in the provision of healthcare in Europe.

—  To become the natural first point of reference for the European Commission and other European institutions when seeking the opinions of patients and/or when seeking to consult patient groups.

—  To co-operate in the formation and execution of joint projects aimed at improving health outcomes and the quality of life of European patients.

  All members of the forum are required to fulfil the following criteria:

—  Legitimacy: EPF member organisations should have statutes registered in one of the member states of the European Union. If the applicant organisation is not registered in an EU Member State, additional information needs to be provided demonstrating EU focus and activities.

—  Representation: EPF member organisations should have members of their own in more than half of the member states of the European Union.

—  Democracy: EPF member organisations should have governing bodies which are elected by their members, who shall be patients, their carers, or their elected representatives.

—  Accountability: Statements and opinions of EPF member organisations should reflect the views and opinions of their memberships and consultation procedures with those memberships should be put in place.

—  Transparency: European patients' organisations should disclose their sources of funding and generally make available their audited financial accounts.

  So far, so good.

ALZHEIMER EUROPE

  Alzheimer Europe is one of the full member organisations of the European Patients' Forum and complies with the Forum's requirement for transparency by making available its annual report on its website[2]. The most recent available report for 2002, shows that the organisation has an annual turnover of approximately

300,000. Income from membership fees is static at about

44,000 for both 2002 and 2001. However, income from sponsorship has risen from

91,000 in 2001 to

130,000 in 2002. Donors are listed with Janssen-Cilag, Lundbeck and Pfizer all shown as contributing between

20,000 and

49,999 in 2003. However, precise amounts are not given and the proportion of total donations arising from the pharmaceutical industry is not declared. Alzheimer Scotland is a board member of Alzheimer Europe and, again, its annual report is made available on its website[3]. This shows an annual turnover of approximately £7 million and lists Janssen-Cilag, Lundbeck, Novartis and Pfizer as corporate supporters. Again, precise amounts are not given and the proportion of total donations arising from the pharmaceutical industry is not declared.

EUROPEAN FEDERATION OF ALLERGY AND AIRWAYS DISEASES PATIENTS' ASSOCIATIONS

  The European Federation of Allergy and Airways Diseases Patients' Associations is also a full member of the EPF but neither accounts nor a list of sponsors is currently available on its website[4]. Asthma UK (previously known as the National Asthma Campaign) is a member of the European Federation of Allergy and Airways Diseases Patients' Associations and its annual report for 2003 is available on its website[5] although not easy to reach from the home page. The group's annual income was more than £10 million and the report lists Boots the Chemist Ltd as donating more that £100,000, Allen& Hanbury and AstraZeneca as donating more than £50,000 each, IVAX, Novartis and Superdrug as donating more than £20,000 each and Aventis Pharma, Merck, Sharp and Dohme, Schering-Plough Ltd as donating more than £10,000 each.

Increasing conflict of interest?

  The number and size of health campaigning organisations across Europe is increasing every year. The public, as both citizens and patients, turn increasingly to these organisations to represent their interests and campaigners speak regularly at key meetings and conferences and are consulted routinely by governments. Global economic slowdown has led to a decline in government and public philanthropy and the faltering stock market has reduced the amount of money available from charitable foundations. The result is that a rapidly increasing proportion of the funding for health campaigning groups comes from the pharmaceutical industry. The industry hopes that an ever closer relationship with health-based charities will stimulate public demand for more of their products and put pressure on healthcare systems and governments to respond. Very few of the health campaigning organisations are completely transparent about the sources of their funding and how it is spent which leads to increasing suspicion of the extent of influence of the pharmaceutical industry. Where organisations do publicise the sources of their funding, pharmaceutical companies figure very prominently but the amounts given are not made public and, again, the extent of influence is difficult to estimate.[6]

  Health campaigning organisations are subjected to increasing pressure from specialist heath PR companies as patient groups are created or wooed to assist with "disease awareness campaigns" or to provide emotionally charged testimony in favour of speedy. regulatory approval of new drugs.[7] Such specialist PR companies include the UK's Shire Health Group. The company's website includes the following rhetoric:[8]

        Public Relations

  The core of public relations is media relations—delivering your message to a wide audience, cost-effectively, through an authoritative third party. We have specialists in international PR and specialists in local PR. At an international level, we plan and deliver global media campaigns centrally, but we also know how to excite and engage local markets to implement a core programme.

  Local media work is much more about one-to-one relationships with journalists. Building individual journalists as advocates for your product or issue. Our media unit is run by ex journalists who know what makes a story. They take your data or any other source material and turn it into emotive news and train your spokespeople to deliver the right message. We have media planners that tailor the right media to your audience ensuring you get the best return on investment.

        Advocacy

  Our belief is that the effective development of opinion leaders, in all your stakeholder groups, is essential for your commercial success. We take a customer-centric approach that identifies a common agenda between you and your stakeholder, be it an individual, an organisation or coalition of groups.

policy and funding.

  In a growing number of markets around the world, non-prescribing customers are making decisions about your product and issues that are key to your business. Our job is to shape their thinking. Our programmes lobby and build partnerships with mutual benefit.

        Consumer

  We have long recognised patients, and physicians for that matter, as consumers in their own right. We can show you how and when to communicate with your ultimate customers, the patients, in the very best way to engage them and achieve the desired response.

  Herxheimer has argued that if the pharmaceutical industry directly or indirectly provides over 20% of an organisations budget, the organisation necessarily becomes dependent on it and this, if nothing else, will influence policies.[9] He cites the interesting case of the Lymphoma Association, a charity that is linked with Roche. The portal www.lymphoma.org.uk leads to two sites: www.lymphoma.org.uk/healthcare.htm for professionals and www.lymphoma.org.uk/support for the public. The first is password protected, "is made possible by an educational grant from Roche Products," and links to a Roche site. The second, which is freely accessible, does not mention Roche. Herxheimer states that one consultancy firm manages both sites.

  It is not the intention of this paper to undermine the important work of health campaigning organisations or to suggest that such organisations are in any way corrupt, but to draw attention to the degree to which third parties, in pursuit of their own commercial interest, are attempting to manipulate the activities of such organisations.

RESPONSE OF EUROPEAN MEDICAL ORGANISATIONS

  In this context, European Medical Organisations need to be very wary of uncritically endorsing recommendations and statements from European and/or national patient and/or health campaigning organisations.

9 June 2004

2   www.alzheimer-europe.org Back

3   www.alzscot.org Back

4   www.efanet.org Back

5   www.asthma.org.uk/donate/images/annrep03.pdf Back

6   Fundraising and the growth of industry involvement. Health and Social Campaigners' News Issue 6, April 2004, pp 6-62. www.patient-view.com Back

7   Burton B, Rowell A. Disease mongering. PR Watch 2003; 10(1). www.prwatch.org/prwissues/2003QI/monger.html Back

8   www.shirehealth.com/index.html (my emphasis) Back

9   Herxheimer A. Relationships between the pharmaceutical industry and patients' organisations. BMJ 2003; 326: 1208-1210. Back