Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Industry funding of patient support groups
- Peter M Lapsley (4 June 2003)
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Breast cancer associations: fund raising and conflict of interest
- Paola Mosconi, on behalf of Italian Forum of EUROPA DONNA (10 June 2003)
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The 'benevolence' of the pharmaceutical industry towards patient organisations
- David O Gebhardt (12 June 2003)
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Corrections - the International Alliance of Patients' Organizations
- Albert van der Zeijden (4 August 2003)
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Peter M Lapsley, Chief Executive Skin Care Campaign
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Dear Editor As the UK umbrella organisation representing the interests of all people with skin diseases and their patient groups, the Skin Care Campaign (SCC) welcomed the balanced approach taken in last week’s BMJ: Education and debate Relationships between the pharmaceutical industry and patients’ organisations. BMJ 326 (7400): 1208). However, the argument that ‘where industry directly or indirectly funds a large part of the budget … this if nothing else will influence policies…’ is one we must contest strongly. Resources are made available to the SCC by many organisations including voluntary group members, and by professional organisations (including the British Association of Dermatologists, British Dermatological Nursing Group, Primary Care Dermatology Society and the Royal Pharmaceutical Society of Great Britain). The majority of funding is received from substantial number of companies –a funding consortium – which manufacture products of value to people with skin diseases. We and those who fund us are absolutely clear about our policy that funds are donated with ‘no strings’ for the SCC’s campaigning and educational work. An independent Board of Directors made up entirely of patient representatives decides our agenda. We believe that we exemplify a successful formula that has real integrity and works well. There is no doubt that the Department of Health, with which we enjoy a close working relationship, would not consult with us in the way that it does if there was any question about our integrity. Understandably, people often suppose that patient support groups necessarily surrender their independence if their income derives chiefly from one sector. In truth, patients, clinicians and the healthcare industries all have remarkably similar objectives, albeit for rather different reaasons. We would welcome greater recognition of the value of industry/ patient partnerships, especially in the continuing absence of government core funding for patient support groups. Yours faithfully
Competing interests: Please see the text of our letter |
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Paola Mosconi, Head Outcome Research Unit Istituto di Ricerche Farmacologiche Mario Negri Via Eritrea, 62 - 20157 Milano Italy, on behalf of Italian Forum of EUROPA DONNA
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Dear Editor, Herxheimer (1) reported and commented about relationship between pharmaceutical companies and consumer/patient associations. It is a very hot topic: the debate on transparency of fund raising for voluntary health associations is far from being resolved, and consumer umbrella associations play an increasingly important role in the discussion of health at European level. In Italy, at least among the hundred breast cancer associations belonging to the Italian Forum of EUROPA DONNA (3,4), transparency of fund raising is rarely discussed, and very few data are available. In the framework of a survey with a standardized self-administered questionnaire on the characteristics of breast cancer associations, sponsored in part by Komen Italia Onlus, we collected some information on sponsorship relations. It’s interesting to note (see table below) the different ways funds raising handled at the individual, institutional, and company level. Most of the funds come from individual collection, and one third of breast cancer associations receive funds from pharmaceutical companies. Fund raising declared by 67 breast cancer associations participating in the survey _________________________________________________________ At the individual level Annual subscription 97% Donation 89% Fund raising through public manifestations 44% At the institutional level Central government 14% Local government 74% Public institutions 6% At the company level Pharmaceutical companies 30% Commercial companies 42% In the same survey we also asked if breast cancer associations had prepared a document on the transparency of their relationship with a sponsor (declaration of competing interest). Only five breast cancer associations declared that they had done so, and among associations sponsored by pharmaceutical companies only two prepared this document. These data confirm the concern expressed by Herxheimer (1) and Hirst (4) on the independence of consumer/patient associations and support the need of more public funding for the organisations involved in the debate on public health. References 1. Herxheimer A. Relationships between the pharmaceutical industry and patients' organisations. BMJ 2003; 326: 1208-10. 2. Mosconi P, Italian Forum Europa Donna. Consumer health information: the role of breast cancer associations. Breast Cancer Research and Treatment 2002; 76: 89-94. 3. Mosconi P, Kodraliu G on behalf of Italian Forum of Europa Donna. Italian Forum of Europa Donna: a survey of the breast cancer associations. Health Expectations 1999; 2: 44-50. 4. Hirst J. Charities and patient group should declare interests (letter). BMJ 2003; 326: 1211. Competing interests: None declared |
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David O Gebhardt, retired biochemist home address: Anna van Burenlaan 1, 2341 VE Oegstgeest, The Netherlands
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Editor--As a patient I know that the pharmaceutical industry helps to finance the running of my patient organization. Thus, the annual contribution is low and we have a glossy quarterly with a professional editor. There is a good secreterial staff and an office and there are subsidies for research on the disease. All this is given to the organisation by the industry. I am aware of the statement by Hirst (1) that the pharmaceutical industry does not donate money to charities for altruistic reasons. Herxheimer (2) believes that succesful partnerships are those where both parties gain something. In my opinion a symbiosis is difficult (but not impossible) to attain, because there is no equality of arms. A patient organisation must be especially wary of drug trials, if they are initiated by the company, who in the future wishes to market the drug. Above all transparency is needed when patients of the organisation participate in such a trial. Care must be taken that the medical adviser of the pharmaceutical company, who may also advise the patient organisation, is not faced with a conflict of interests. As long as there is absolute scientific honesty, a symbiosis between the two unequal partners should be feasable. D.O.E.Gebhardt, a patient without competing interests, Anna van Burenlaan 1, 2341 VE Oegstgeest, The Netherlands 1 Hirst J. Charities and patient groups should declare interests. BMJ 2003; 326: 1211 2 Herxheimer A. Relationship between the pharmaceutical industry and patients'organisations. BMJ 2003; 326: 1208-1210 Competing interests: None declared |
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Albert van der Zeijden, Chair, International Alliance of Patients' Organizations (IAPO) 703 The Chandlery, 50 Westminster Bridge Road, London SE1 7QY, United Kingdom
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Dear Sir, Recently I saw an article of Mr Andrew Herxheimer in BMJ Volume 326, 31 May 2003, entitled Relationships between the pharmaceutical industry and patients’ organisations. As Chair of the International Alliance of Patients' Organizations (IAPO), I agree with most of Mr Herxheimer’s article. At the beginning of the article Mr Herxheimer writes: “This article explores the position, mainly in the United Kingdom...”. At page 1209 however, Mr Herxheimer introduces IAPO as a prominent and highly visible international association. This is true, but the rest of the information about IAPO is inaccurate and unfounded. In the following I will quote some of the statements of Mr Herxheimer and confront it with nothing else but the facts. Mr Herxheimer writes: “IAPO… was founded and is funded by Pharmaceutical Partners for Better Healthcare, a consortium of about 30 major companies”. Facts: The Pharmaceutical Partners for Better Healthcare (PPBH) was a collaboration of about 40 innovative pharmaceutical companies. It existed from 1993 until the end of 1999. IAPO was founded in 1999 by representatives of forty patients’ organisations from many different countries with the aim to promote the need for patient-centred healthcare, introducing the perspective of the long-term patients into the debate. PPBH donated unrestricted start up funding for the year 1999 only. Since that time IAPO has survived by a variety of funding sources, including patients’ organisations, the European Commission, in-kind funding, foundations and unrestricted funds of a diversity of companies, representing the pharmaceutical as well as the medical devices industry. So, Mr Herxheimer’s statement that IAPO was founded by PPBH is untrue, but it is true that they were involved in our initial funding. It is untrue that IAPO is still funded by the non-existing organisation PPBH. IAPO has faced very difficult financial times during recent years, and this is common to the majority of patients’ organizations worldwide. We have managed to survive, and 2003 is proving to be a year of building up our communications and restructuring the organization to ensure a sustainable and effective future as the global voice for patients. One particular development that will greatly enhance our ability to communicate both with patients’ organizations and other stakeholders is the redevelopment of our website: www.patientsorganizations.org. This will allow us to present clear and transparent information regarding our structure, financing and processes and to strengthen links between patients’ organizations worldwide. I will not reflect on Mr Herxheimer’s feelings about the preferences of the European Commission, for it is hard to debate feelings. However, the following statement: “With other organisations linked to the industry, they successfully lobbied the commission to propose allowing industry to provide direct to consumer “information” about prescription medicines (the European Parliament is opposing this)”, must be answered as it does not represent the facts, but is very suggestive. Facts: On 18 July 2001, Commissioner Erkki Liikanen, responsible for Enterprise and the Information Society, gave a press conference in Brussels to launch the “Commissions proposal to review EU pharmaceutical legislation”. One of the slides was called: “Better access to information for patients”. What Mr Liikanen said there was completely new for IAPO. I will quote the text of Mr Liikanens slide: • “For certain products subject to prescription • Patient oriented and controlled information • Not direct to Consumer Advertising type • EU set of “Good Information Practice” to be adopted • Pilot phase • 3 specific groups of long term and chronic diseases: AIDS, Asthma and chronic bronchitis, Diabetes • Based on strong and specific patient demand • Effects to be monitored and assessed • To be reviewed in 5 years” In his presentation Mr Liikanen added to this text the following: “Still with the patient in mind, we are also introducing a pilot system aimed to ensure the availability of better, patient-oriented and valid information on authorised prescription drugs – for three types of illnesses: AIDS, diabetes and asthma. This is not direct to consumer advertising. We are not introducing of advertising for prescription drugs. What we want to do is, as a test case, with respect to three specific disease groups, to make sure that validated and patient oriented information can be made available – when this information is requested by patients or a group of patients.” Mr Liikanen also stated that these diseases are chosen for the following reasons: they are long term and chronic; there is a strong and specific demand for information; the types of drugs used are the same throughout Europe; the results of the 5-year pilot should be relatively easy to monitor; and people are currently forced to rely on (probably inaccurate) information from outside Europe on the internet. When you read the text of Mr Liikanen it is not easy to understand why Mr Herxheimer writes “information”, suggesting that it was not about information. In addition his suggestion that the Commission came with this proposal as a result of our successful lobby is an overestimation of our influence. The whole proposal, now known as “The Review 2001” was mainly new for us and most other patients’ organisations. The proposal itself however started a very intense debate about the pros and cons of information direct from the industry to patients. We heard from patient organisations often that they were in favour and from consumer organisations that they were against it. The discussion about better information for patients is not over now and that is a success, but the proposal in the “Review” is passed, for five weeks ago the Council of Ministers came with a principle agreement of common understanding and since both the Commission and the rapporteurs in the European Parliament accepted this, direct-to-consumer information is no longer a part of the proposal to the Parliament. Mr Liikanen spoke about information, yet the discussion in the parliament was about advertising, and this was exactly the term used by most consumer organisations, governments and every one opposing the proposal. IAPO’s activities relating to direct-to-consumer information: Thanks to the independent research organisation PatientView, IAPO got the opportunity to roll out a survey of 500 patient organisations located in all EU countries. Almost 30% of those organisations participated in the survey, all of them in their own language. The report of this survey is published in June 2002 under the title “Should pharmaceutical companies provide the public with more information on prescription medicine? The view of EU-based patient groups”. PatientView was completely responsible for the scientific methodology of the survey. We needed funding for the survey, but decided that no funding would be accepted from pharmaceutical companies, the European Commission or national governments for they all showed to have a vested interest in the discussion. Together with the questionnaire, all patient organisations got information about the proposal of the Commission and about the regulation for advertising in the USA. Furthermore from the outcomes we excluded the patient organisations with positive answers to the question whether they were dependent for core funding from the pharmaceutical industry. The survey showed a strong support to the proposal to allow pharmaceutical companies to supply the public with significantly more information about prescription medicine, but with a strong demand for strict limitations. These were the answers of organisations of people with long-term medical conditions, so exactly the group addressed by the proposal. You see it is not so that IAPO claimed to represent patients in many countries, we actually distributed the opinions of patient groups in all 15 EU countries. So, with the survey to support us the position of IAPO is as follows: • Long-term users of medicines want more and better information, regardless the source of the information • The information must be strictly monitored and regulated for patients want to be sure that they can rely on the information • Patients want the industry to be transparent. They want to control that all information, positive and negative, of a particular product is used for the information to the public. I do not know that this is what the industry wants, but I do know that this is what the patients of the EU want and what the patients want is what drives IAPO. We are still very grateful that PatientView gave us this time the chance to determine the patients’ views on this issue. I hope in view of the factual errors in Mr Herxheimer’s article, you will correct these using the information I have provided in an upcoming issue of the BMJ. Perhaps also you may want to consider a future article on the issue of direct-to-consumer information in the EU? Please do contact me if you require any clarification of the issues I have raised, or if you need any further information about IAPO. Competing interests: None declared |
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