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Nov 20, 2008

Are drug companies hijacking consumer advocacy?

When an industry-funded so-called consumer advocate is a keynote speaker at such a conference, it shows how effectively pharmaceutical companies are hijacking consumer advocacy, writes Melissa Raven.

Australia’s National Medicines Policy and National Strategy for Quality Use of Medicines both enshrine partnership with the pharmaceutical industry. One of the many manifestations of this is a conference next week that is being jointly sponsored by Medicines Australia (the peak industry body) and the Australian Government Department of Health and Ageing.

The 2008 Second Joint Medicines Policy Conference, The Future of Medicines Policy in Australia, will be held in Canberra on November 25 and 26. There will be a major focus on health technology assessment, which includes evaluation of prescribed drugs.

One keynote speaker at the conference is Sir Michael Rawlins, Chairman of the National Institute of Health & Clinical Excellence (NICE), which is responsible for health technology assessment for the National Health Service in England and Wales. NICE was recently accused of being ‘barbaric’ because of its refusal to fund four expensive kidney cancer drugs which, according to Rawlins, could be manufactured for a tenth of the cost.

Many of the attacks on NICE are delivered by patient/consumer organisations funded by the pharmaceutical industry. This is part of a disturbing international trend for pharmaceutical companies to use so-called consumer advocates and consumer organisations to lobby covertly on their behalf.

Rawlins will be sharing the keynote speaker podium at the Australian conference with Canadian ‘consumer advocate’ Dr Durhane Wong-Rieger, (who will also be facilitating a workshop for consumer organisations jointly run by Medicines Australia and the Consumers Health Forum of Australia on Monday 24 November). Ironically, Wong-Rieger has a long history as the front-person of industry-funded attacks on Canadian government organisations similar to the tactics used in the UK against NICE.

Many Canadian consumer advocates and health professionals are critical of Wong-Rieger’s relationships with the pharmaceutical industry, including her promotion of fast-tracking of expensive poorly tested drugs and direct-to-consumer advertising. She and the organisations with which she is associated have also begun to attract criticism internationally, for example in Essential Action’s report ‘Patients, patents and the pharmaceutical industry: The pharmaceutical industry ties of the organization “Patients and Patents,” and the signers of the “Patient declaration on medical innovation and access“.

Healthy Skepticism, an Australian-based international non-profit organisation whose main aim is to improve health by reducing harm from misleading drug promotion, wrote to Mr David Learmonth, Deputy Secretary with the Department of Health and Ageing, expressing our concerns about Wong-Rieger’s presentation. His reply dismissed our concerns and claimed that Wong-Rieger’s industry connections are well known. However, we do not believe that this is the case (except increasingly in Canada), and it is certainly not reflected in her speaker profile in the conference brochure.

Learmonth’s reply also claims that Wong-Rieger is not speaking as a designated consumer advocate. However, her speaker profile emphasises her experience as a consumer advocate/representative and her role as head of Consumer Advocare Network, a Canadian national network that provides a ‘common voice for patient organisations’.

In February 2008, that organisation jointly hosted a conference in Brazil, funded by the Pharmaceutical Research and Manufacturers of America, on access to medicines. Although patient groups were the specific target audience for this meeting, members of a Brazilian HIV/AIDS support organisation, from GTPI/REBRIP, reported that they were banned from attending.

Next week’s conference is about the future of Australian medicines policy. When an industry-funded so-called consumer advocate is a keynote speaker at such a conference, it shows how effectively pharmaceutical companies are hijacking consumer advocacy.

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3 thoughts on “Are drug companies hijacking consumer advocacy?

  1. Dr Ian Haines

    In health-care, the apparent hijacking and corrupting of many patient advocate/ community organisations by ‘Big Pharma’ is not really surprising. The very sophisticated and multi-layered marketing techniques used by increasingly well-trained ‘big pharma’ professionals have unfortunately reduced the credibility of these patient groups. Maintaining independence through transparency and full declaration of potential conflicts of interest are absolutely vital if these patient groups are to play a meaningful role in public policy development and fulfill their significant potential.

  2. Professor Ric Day

    Consumer’s health related organisations need to attend carefully to ensuring transparency regarding their funding sources, proportion of total funding received from various sources, rules for accepting funding, and their governance arrangements around funding so the potential influences on the opinions and positions put by the organisation publicly can be assessed for potential bias. Many large disease related consumer organisations in Australia are well aware of these matters and such information is provided in annual reports and on their websites. There is guidance in Australia for Consumer Health Organisations via Consumer’s Health Forum (CHF) – it was developed jointly by CHF and Medicines Australia (the prescription pharmaceutical manufacturers national association) and had wide input from consumers and their organisations.
    Consumer organisations should strive to raise funds for their important activities as much as possible from sources other than those pharmaceutical companies with products relevant to that particular disease the organisation is focused upon. Guidance for individual consumer advocates should reflect that directed at health professionals with regard to potential and actual conflicts of interest (eg Royal Australian College of Physicians Guidelines for Interactions with the Pharmaceutical Industry) when offering or submitting public opinions that involve products of companies with which the consumer has an association e.g. consultant, recipient of gifts etc, or when policies that might impact on companies are being discussed. There should be no sense of disguising or omitting such information – the impact of any comment or input however useful is diminished.

  3. Helen Hopkins, Consumers Health Forum

    Australians should not underestimate the strength and influence of our consumer organisations that represent millions of people. We are heard through attending major events such as the Joint Medicines Policy Conference next week. In Australia we uphold transparent and accountable processes for any relationships with pharmaceutical companies.
    Health consumers value our PBS and persuaded the pharmaceutical industry that cost of generic medicines must be reduced to world prices while retaining early access to innovative medicines and clinical trials. Consumer networks withstood direct to consumer advertising of prescription medicines and made sure that Medicines Australia strengthened its Code of Conduct against back door attempts at patient education. We achieved transparency about new medicines through publication of PBAC decisions and direct opportunities for consumer, input including some consumer impact statements.
    No wonder a Canadian speaker wants to come and hear about how consumer organisations in Australia work!
    Our leading consumer advocates will welcome Durhane Wong-Reiger to a workshop for consumer organisations to share the challenges we face. This workshop is co-convened by Consumers Health Forum of Australia and Medicines Australia as it provides an excellent opportunity for consumers to network before the 2008 Joint Medicines Policy Conference. Australian consumers will speak at the conference and the audience will include a strong, well-prepared contingent of Australian consumer representatives.
    We recognise the challenges of collaboration with industry and that’s why the Consumers Health Forum of Australia and Medicines Australia collaborated to develop the Working Together Guide in 2006. That’s why the revised version will be distributed at the 2008 workshop and conference.
    We encourage all those interested in medicines policy in Australia to get behind the consumer organisations that represent the people at the centre of health care.