Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Is HAI a patient or consumer group?
- Peter Martin (4 May 2007)
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response from Cancerbackup
- Joanne Rule (4 May 2007)
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Getting the facts right makes better evidence
- Jean Mossman, PA13 4SQ (10 May 2007)
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Follow the money
- Adrian H Sie (13 May 2007)
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Author's reply
- Barbara Mintzes, University of British Columbia, Vancouver B.C. Canada V6T 1Z3 (22 May 2007)
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Peter Martin, Director Harefield, UB9 6NS
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Ms. Mintzes describes the bodies listed on her conflict of interest statement,Health Action International, DES (diethylstilboestrol) Canada, and the Steering Groups of Women and Health Protection and Pharmawatch as consumer and patient groups without industry funding. In the specific case of Health Action International the vast majority of the European branch's funding appears to come from Governmental sources, at least as far as can be garnered from their website, the latest disclosure being 2004: http://www.haiweb.org/01_about_finances.htm Membership subscriptions for HAI at just over €5000 are relatively insignificant. It seems ironic that Barbara Mintzes castigates various patient groups when their funding from the pharmaceutical industry is less than 10%, yet HAI funding from patients seems to be around 0.5% and funding from Governments, who might be thought by some to have a vested interest in minimising short term expenditure on medicines, is more than 87%. In view of Dr. Kent's comments in his related article that the idea that "public money, or grants from charitable trusts, come without strings attached is a fiction", one wonders both about the motives for Governmental bodies in funding HAI Europe, and the legitimacy of HAI Europe's claim to be representing the view of patients and consumers. Which patients? Which consumers? I should add these are my personal views and not those of my employer, Norgine. Competing interests: Employee of a pharmaceutical company, Norgine. |
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Joanne Rule, Cancerbackup Chief Executive Cancerbackup EC2A 3JR
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Dear Sirs In response to Barbara Mintzes comments, should patient groups accept money from drug companies? (May 4th) that Cancerbackup does not list the possible side effects of trastuzumab, or say where our funding comes from – this is not the case. First, Cancerbackup provides up to date and accurate information about treatment including all possible side effects, both on our website and in our factsheets. Secondly, we provide a full list on our website and now in our press releases of all funders. We are advised by an independent Clinical Advisory Board. Pharmaceutical companies have no influence on any decision we take. Yours faithfully Joanne Rule
Competing interests: None declared |
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Jean Mossman, Freelance consultant 12 Auchenbothie Gardens, PA13 4SQ
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Your head to head on whether patient groups should receive funding from drug companies was a welcome first step in opening up a proper discussion of the whole issue of funding with or without strings, whoever the donor or recipient. However, at least one major inaccuracy in the article by Barbara Mintzes leaves one questioning how reliable her ‘evidence’ is. She comments that ‘Cancer United, a patient group funded by Roche, which markets trastuzumab (Herceptin) and bevacizumab (Avastin) is run by the public relations company Weber Shandwick. The group advocates full funding of cancer drugs in Europe.’ She clearly did not get this information from Cancer United’s website, from the chairman or co-chairman of its Executive Board, or from anyone involved with the campaign. Cancer United is not a patient group, it is an informal coalition of key figures in European oncology who share a vision to improve the wellbeing of cancer patients (‘Every cancer patient deserves the best’). It is not run by Weber Shandwick but by the above mentioned coalition. It makes no call for full funding for cancer drugs, but it does call for a European Cancer Strategy which in turn would press for comprehensive national cancer plans in all EU members states. The campaign was launched with funding from Roche but now has funding from another two drug companies and one patient group, and all the Executive Board members donate their expertise and time. Cancer United commissioned a review of existing data on cancer care which was carried out by Imperial College and which is available on the Cancer United website. This review concluded ‘substantial inequities exist in the burden of cancer, availability and access to high-quality services and innovative technologies, as well as outcomes for cancer. Concerted effort is needed to address these variations and inequities that are unacceptable for Europe that prides itself on social responsibility’. Cancer United is part of that concerted effort and it calls for each country to have in place: specific plans to improve the organisation of cancer services; greater attention to quality; more focus on prevention; and continuous efforts to improve outcomes. Anyone who agrees that these are worthwhile aims is invited to sign the call for action at www.cancerunited.org. Competing interests: JM is paid as Secretary General of Cancer United and has a personal interest in improving cancer services |
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Adrian H Sie, Specialist Registrar in Paediatrics Royal Hospital for Sick Children, Yorkhill, Glasgow G3 8SJ
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Barbara Mintzes forgets to mention that, besides the evidence of industry influence on patient groups, industry sponsorship amounts to an opportunity cost for society. Money from industry for sponsorship must come from revenues for its products; it is effectively a tax on the price of its products. Patients and reimbursement agencies ultimately bear the cost - perhaps they would prefer to spend the money in other ways. Competing interests: None declared |
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Barbara Mintzes, Assistant Professor Dept of Anesthesiology, Pharmacology & Therapeutics, University of British Columbia, Vancouver B.C. Canada V6T 1Z3
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In setting the record straight, Joanne Rule, CEO of Cancerbackup, has misquoted me. I made no general statements about Cancerbackup’s policies. I referred to the lack of balance and disclosure of funding links to Roche in the organization’s campaign supporting trastuzumab (Herceptin) in early breast cancer. I am not alone in raising these concerns: a Lancet editorial critiqued Cancerbackup (then CancerBACUP)’s actions [1] and there were critical press commentaries. If these critiques have contributed to better disclosure of funding and greater attention to balance in information provision, Cancerbackup should be applauded for its response. This does not eliminate the note of caution evoked by the initial trastuzumab (Herceptin) press campaign, however. Jean Mossman, of Cancer United, disagrees with my characterization of the coalition as a patient group. Cancer United is not unlike many patient groups in defining itself as, “a coalition of patients, patient groups, doctors, nurses, researchers, industry, policy makers and major institutions involved in cancer research and care.” [2] However, in this case I stand corrected. The Imperial College study that Mossman cites castigates regulatory slowness in approval of new cancer drugs, without any attention to the quality of pre-market data nor of regulatory decision-making, as well as criticizing delays in access due to the time taken for reimbursement decisions for licensed drugs. [3] The assumption is that all licensed cancer drugs should be reimbursed. The only comment on health technology assessments or pharmaco-economic analyses is a concern that they may limit access and discourage product innovation. Nowhere is there a hint that systematic reviews of the benefits and harmful effects of new drugs can benefit patients, in helping to distinguish real therapeutic advances from new drugs without any advantages over existing therapies in terms of survival, quality of life or the frequency or severity of adverse effects. Finally, Peter Martin of Norgine pharmaceuticals raises doubts about Health Action International (HAI)’s status as a patient or consumer group because of government funding and limited reliance on membership fees. Health Action International (HAI) was founded in 1981 under the umbrella of the International Organization of Consumers Unions (IOCU), now Consumers International, to promote consumer interests in drug policy. HAI is now an independent network with a focus on improving access to essential medicines and rational drug use. Regional HAI networks in Europe, Asia, Latin America and Africa have individual and organizational members. Only HAI-Europe charges membership fees, and these are often waived in Eastern Europe. Most of HAI’s funding, as Martin points out, is from the Dutch Ministry of Foreign Affairs. Funding is obtained in open competitions and earmarked for programmes of work jointly defined by the four regional networks. A lack of democratic membership structure or insistence on professional qualifications as a prerequisite for membership would raise questions about HAI’s status as a consumer group. It is hard to see how public financing – ultimately from tax revenues – make it less of a consumer group. References [1] Slevin M. Funding of patients' groups. Lancet 2006;368:202. [2] Cancer United. Wide disparities in cancer care across Europe affect patients’ chance of survival. Press release. Brussels: October, 19, 2006. Available at http://www.cancerunited.org/-media-centre.html. Accessed May 22, 2007 [3] Afat R. Burden of cancer and variations in cancer care in Europe: a review of published literature. Imperial College, London. Tanaka Business School, 2006. Available at:http://www.cancerunited.org/images/stories/media_files/Burdens_of_cancer_and_variations_in_cancer_care_in_Europe.pdf. Accessed May 22, 2007 Competing interests: [This is an author's reply - no change from article] |
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