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Always look a trojan horse in the mouth
The leading edge THE LANCET
Neurology Always look a trojan horse in the mouth In the current era of the “expert patient”—in which people are becoming less trusting and less reliant on their physicians for information and advice—many turn to the internet for information about a disease that they, or a family member, have been diagnosed with. A quick search will bring up a whole host of websites offering information about diseases and treatments. But how reliable and accurate is this information? And, more importantly, is there a hidden agenda? Information for patients could easily be exploited by the pharmaceutical and device industries. In October, the US-based organisation We Move launched a new, monthly newsletter to provide information to patients with Parkinson’s disease. The newsletter, and the website, are sponsored by Medtronic Inc, whose Activa® Therapy (deep brain stimulation) features heavily. Indeed, in order to subscribe to this newsletter—titled “Hope for Parkinson’s”—the consumer has to answer the question “How seriously are you (or your loved one) considering Activa® Therapy (deep brain stimulation) to control symptoms of Parkinson’s disease?” This is a rather blatant example of the tactics used by some companies: the more subtle, hidden influences are perhaps more cause for concern. Patients’ organisations are another well-used source of information on diseases, available treatments, and current research, including new and ongoing clinical trials. It is worrying, therefore, that last year the European Agency for the Evaluation of Medicinal Products reported that 14% of patients’ organisations in the European Union receive funding from the pharmaceutical industry for their “core activities”. And in April this year, the Consumers’ Association in the UK published its report on “Who’s injecting the cash?” into patients’ organisations. Out of 125 websites investigated, only 32 listed their donors and only two (the Alzheimer’s Society and Diabetes UK) explained their funding policy. Such disclosure is important considering that the Alzheimer’s Society is campaigning for better access to drugs in the UK for the treatment of Alzheimer’s disease, specifically donepezil, rivastigmine, galantamine, and memantine. In 1999, Biogen and Schering launched a similar campaign in the UK to encourage patients with multiple sclerosis to lobby their health authorities for access to interferon beta, a treatment that was not approved by the National Institute of Clinical Excellence because it was not cost effective. The campaign was
THE LANCET Neurology Vol 2 December 2003
subsequently halted by the Medicines Control Agency because it was deemed to be unlawful promotion. The Alzheimer’s Society, however, says it has a strict policy on industry funding, which is reassuring, especially since the pharmaceutical companies that produce and market the four campaign drugs all give funds to the society. However, the society is careful to accept funding only for “unspecified purposes”, and not for particular campaigns, which could compromise the society’s independence. Julia Cream, head of public relations, told The Lancet Neurology that she was glad that the ground rules for a strict funding policy had already been laid down before drugs for Alzheimer’s disease became available and the drug companies came knocking at the door. In its report, the UK Consumers’ Association called for “all patients’ organisations to list their donors and make funding policies widely available”, and goes one step further to propose the foundation of a central, independent body that could provide financial support to patients’ organisations. These proposals could enable organisations to retain their independence but would eliminate the benefits of direct contact with the industry. After all, pharmaceutical companies invest vast sums into research and drug development and are a valuable source of information. Likewise, patients’ organisations represent the “patients’ voice” and can provide drug companies with valuable information about patients’ problems and needs. Some patients’ organisations, particularly the large national and international alliances, are well aware of the potential conflicts of interest attached to industry funding and have laid down the necessary ground rules. But smaller organisations can be dependent on the pharmaceutical industry for a substantial proportion of their financial support, and may therefore feel that they are in too weak a position to say “no”. With the Association of the British Pharmaceutical Industry currently lobbying the European Parliament to relax its rules on direct-to-consumer advertising, the situation is likely to get more, not less, complicated. Patients, and doctors, should be wary of any hidden agendas behind their information sources and patients’ organisations would do well to ensure their funding policies are wellformulated and strictly policed. There should be nothing to hide. The Lancet Neurology
http://neurology.thelancet.com
For personal use. Only reproduce with permission from The Lancet.
711
Neurology Always look a trojan horse in the mouth In the current era of the “expert patient”—in which people are becoming less trusting and less reliant on their physicians for information and advice—many turn to the internet for information about a disease that they, or a family member, have been diagnosed with. A quick search will bring up a whole host of websites offering information about diseases and treatments. But how reliable and accurate is this information? And, more importantly, is there a hidden agenda? Information for patients could easily be exploited by the pharmaceutical and device industries. In October, the US-based organisation We Move launched a new, monthly newsletter to provide information to patients with Parkinson’s disease. The newsletter, and the website, are sponsored by Medtronic Inc, whose Activa® Therapy (deep brain stimulation) features heavily. Indeed, in order to subscribe to this newsletter—titled “Hope for Parkinson’s”—the consumer has to answer the question “How seriously are you (or your loved one) considering Activa® Therapy (deep brain stimulation) to control symptoms of Parkinson’s disease?” This is a rather blatant example of the tactics used by some companies: the more subtle, hidden influences are perhaps more cause for concern. Patients’ organisations are another well-used source of information on diseases, available treatments, and current research, including new and ongoing clinical trials. It is worrying, therefore, that last year the European Agency for the Evaluation of Medicinal Products reported that 14% of patients’ organisations in the European Union receive funding from the pharmaceutical industry for their “core activities”. And in April this year, the Consumers’ Association in the UK published its report on “Who’s injecting the cash?” into patients’ organisations. Out of 125 websites investigated, only 32 listed their donors and only two (the Alzheimer’s Society and Diabetes UK) explained their funding policy. Such disclosure is important considering that the Alzheimer’s Society is campaigning for better access to drugs in the UK for the treatment of Alzheimer’s disease, specifically donepezil, rivastigmine, galantamine, and memantine. In 1999, Biogen and Schering launched a similar campaign in the UK to encourage patients with multiple sclerosis to lobby their health authorities for access to interferon beta, a treatment that was not approved by the National Institute of Clinical Excellence because it was not cost effective. The campaign was
THE LANCET Neurology Vol 2 December 2003
subsequently halted by the Medicines Control Agency because it was deemed to be unlawful promotion. The Alzheimer’s Society, however, says it has a strict policy on industry funding, which is reassuring, especially since the pharmaceutical companies that produce and market the four campaign drugs all give funds to the society. However, the society is careful to accept funding only for “unspecified purposes”, and not for particular campaigns, which could compromise the society’s independence. Julia Cream, head of public relations, told The Lancet Neurology that she was glad that the ground rules for a strict funding policy had already been laid down before drugs for Alzheimer’s disease became available and the drug companies came knocking at the door. In its report, the UK Consumers’ Association called for “all patients’ organisations to list their donors and make funding policies widely available”, and goes one step further to propose the foundation of a central, independent body that could provide financial support to patients’ organisations. These proposals could enable organisations to retain their independence but would eliminate the benefits of direct contact with the industry. After all, pharmaceutical companies invest vast sums into research and drug development and are a valuable source of information. Likewise, patients’ organisations represent the “patients’ voice” and can provide drug companies with valuable information about patients’ problems and needs. Some patients’ organisations, particularly the large national and international alliances, are well aware of the potential conflicts of interest attached to industry funding and have laid down the necessary ground rules. But smaller organisations can be dependent on the pharmaceutical industry for a substantial proportion of their financial support, and may therefore feel that they are in too weak a position to say “no”. With the Association of the British Pharmaceutical Industry currently lobbying the European Parliament to relax its rules on direct-to-consumer advertising, the situation is likely to get more, not less, complicated. Patients, and doctors, should be wary of any hidden agendas behind their information sources and patients’ organisations would do well to ensure their funding policies are wellformulated and strictly policed. There should be nothing to hide. The Lancet Neurology
http://neurology.thelancet.com
For personal use. Only reproduce with permission from The Lancet.
711