Healthy Skepticism Soapbox
Healthy Skepticism’s Concern about Keynote Speaker at Australian Medicines Policy Conference
Healthy Skepticism is concerned about the appropriateness of a keynote speaker about the role of the consumer in health technology assessment at a conference later this month. Canadian 'consumer advocate' Durhane Wong-Rieger PhD is scheduled to address the Medicines Australia and Australian Government Department of Health and Ageing 2008 Second Joint Medicines Policy Conference, The Future of Medicines Policy in Australia, in Canberra on Wednesday 25 November.
The brochure for the conference is online at http://www.medicinesaustralia.com.au/pages/images/JMPCo8_Program&Registration.pdf.
As discussed in the letter (see below) sent to Mr David Learmonth, Deputy Secretary with the Department of Health and Ageing, Dr Wong-Rieger has extensive ties to the pharmaceutical industry, detailed in this background report, and we believe that this is an example of a disturbing trend for pharmaceutical companies to use so-called consumer advocates and consumer organisations to lobby covertly on their behalf.
Mr Learmonth’s reply dismisses Healthy Skepticism’s concerns and claims that Dr Wong-Rieger’s industry connections are well known. We do not believe that this is the case (except increasingly in Canada, where many consumer advocates are critical of Dr Wong-Rieger), and it is certainly not reflected in her speaker profile in the conference brochure. Mr Learmonth’s reply also claims that Dr 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 a national network that provides a ‘common voice for patient organisations’.
Update: Report on the Second Joint Medicines Policy Conference, 25/26 November 2008, Canberra
by Dr Agnes Vitry
At the end of 2008, some Healthy Skepticism members alerted the organizers of the Second Joint Medicines Policy Conference (held 25/26 November 2008 in Canberra) to the strong pharmaceutical industry ties of the international “consumer” representative, Dr Durhane Wong-Rieger. They failed to prevent her presenting as a designated consumer advocate. This is not very surprising as, even though the conference was “jointly” organized by the Australian Department of Health and Ageing (DHA) and Medicines Australia (MA), the prescription drug manufacturers’ organisation, it was dominated by the drug industry’s agenda. Only a handful of academics (including me) were there. The participants were mainly industry and DHA employees, a few representatives of the main health professional organisations and around 10-20 consumers (mostly from Consumers Health Forum) whose trips and expenses for the conference had been paid by MA.
It was clear at this conference that the drug industry’s demands were high on the DHA’s agenda as illustrated by the interim report released by the Access to Medicines working group (http://www.health.gov.au/internet/main/publishing.nsf/Content/amwg), a bipartite working group with representatives of DHA and MA, but curiously no other stakeholders and no consumer representatives. The pharmaceutical industry requested streamlining of the processes of the Pharmaceutical Benefits Advisory Committee (PBAC), for example concurrent evaluation of new medicines with the TGA (Therapeutics Goods Administration) and MSAC (Medical Services Advisory Committee), more flexible funding arrangements like CED (Coverage with Evidence Development), improved representation of industry in health technology assessment (HTA) bodies, etc. Important consumer issues such as the impact of increasing co-payments on access to the medicines were not on the agenda.
Dr Wong-Rieger made a strong speech, denying any legitimacy to HTA bodies, such as the PBAC in Australia and National Institute for Health and Clinical Excellence (NICE) in the UK, as they were using “blunt” instruments (i.e. cost-effectiveness analysis (CEA) and “values of regulators” (in defense of the public good) in opposition to individual patients’ values that she called “social” values. She presented several examples of patients who had been denied life-saving treatments because of HTA bodies’ recommendations. Sir Michael Rawlins, the other international speaker and Head of NICE, responded, referring to the core characteristics of NICE’s HTAs: robustness, transparency, inclusiveness, independence and timeliness. However, it must be said that there is a growing recognition by HTA bodies that CEA is only a decision aid and that there is a need to increase consumer engagement in the decision making processes of HTA bodies. There is currently no consensus on the best ways to do it. In Australia, the Pharmaceutical Benefits Scheme has just started to put on-line the PBAC’s agendas and request consumers’ input 6 weeks before PBAC meetings. The PBAC is also asking CHF to provide consumer impact statements in order to better identify issues for patients and carers prior to its meetings. NICE has a citizens’ council which provides recommendations on NICE’s decision-making criteria.
I did not feel that Dr Wong-Rieger’s extreme views were an influence on Australian consumer representatives, though I did not attend the previous day’s workshop for consumer health organisations, which was organized by CHF and MA (and funded by MA) and was facilitated by Dr Wong-Rieger. There is currently a working relationship between CHF and the PBAC, and attacks against PBAC’s decisions are more often made by single disease patient organisations. However, despite the growing concern about entanglement of consumer organisations with the pharmaceutical companies and the creation of astroturf consumer groups that rely mainly upon industry funding, there was no discussion on the legitimacy of consumer organisations to represent all consumers in HTA bodies and on how to handle potential conflicts of interests. The booklet “Working Together: A guide to relationships between health consumer organisations and pharmaceutical companies” (http://www.chf.org.au/publications/all_search3.asp?id=599) produced by CHF and MA in 2005 was distributed to all conference participants. It is a very “soft” approach to the regulation of conflicts of interests, with no information about the potential negative consequences of this kind of partnership (see Barbara Mintzes’ article on http://www.bmj.com/cgi/content/full/334/7600/935) and no precise recommendations such as the importance of public reporting of industry funding. This leaves Australian consumer organisations vulnerable to all kinds of industry manipulations especially now that greater consumer participation is sought from the HTA bodies.
Another aspect of the conference relevant to Healthy Skepticism members was a panel discussion on “Marketing Medicines: Role in QUM [Quality Use of Medicines]” with Dr Ken Harvey as Chair of the panel, a representative of the generic industry but remarkably no representative of the prescription drug industry. Although both Professor Lloyd Sansom, the PBAC’s chairman, and Dr Lynn Weekes, CEO of the National Prescribing Service (NPS), pointed out the current lack of understanding by the drug industry of QUM issues, there was no public recognition of the irreconcilability of industry interests and the QUM framework. Australia’s National Strategy for QUM states that “Medicines industries are responsible for … marketing and promoting products in a way that facilitates quality of use”. Once again, at this conference, working together was presented as the ideal that all stakeholders should strive for and achieve, without proper acknowledgment of the conflicts of interests and their consequences.
Letter to David Learmonth re ‘consumer’ speaker
23 September 2008
Mr David Learmonth
Deputy Secretary
Department of Health and Ageing
GPO Box 9848
MDP 84
CANBERRA ACT 2601
AUSTRALIA
Dear Mr Learmonth
Re: Dr Durhane Wong-Rieger, keynote speaker at Second Joint Medicines Policy Conference
We are writing to express Healthy Skepticism’s concern about Dr Durhane Wong-Rieger’s scheduled keynote address, ‘Role of the Consumer in Health Technology Assessment’, at the Medicines Australia and Australian Government Department of Health and Ageing 2008 Second Joint Medicines Policy Conference, The Future of Medicines Policy in Australia, on Wednesday 26 November 2008.
Healthy Skepticism is an Australian-based international non-profit organisation whose main aim is to improve health by reducing harm from misleading drug promotion. We believe that it is inappropriate for Dr Wong-Rieger, and the organisations with which she is associated, to be billed as representing consumers and consumer interests, because they have a strong record of supporting pharmaceutical industry objectives in the guise of consumer advocacy.
The conference program states, correctly, that Dr Wong-Rieger is the founder and head of the Consumer Advocare Network. However, the explanation that the Network is a ‘national network to provide a common voice for patient organisations’ is very misleading. As detailed in the attached report, the Network has the hallmarks of an ‘astroturf’ (industry-initiated pseudo-grassroots) lobby group. Its website provides no information about its members or staff, nor any annual reports. Furthermore, the website is stagnant, with most entries dating from 2002 and 2003. The Network’s membership seems to be ethereal and transitory, and its public policy positions have routinely advanced pharmaceutical industry objectives. Dr Wong-Rieger has used her position as head of the Network to advocate for direct-to-consumer advertising (DTCA). Indeed the Network’s origins are strongly linked to industry advocacy for DTCA in Canada.
The Network has received funding from Rx&D, Canada’s pharmaceutical industry trade association, and PhRMA (Pharmaceutical Research and Manufacturers of America) . In February 2008, the Network jointly hosted a conference in Brazil, funded by PhRMA. Although patient groups were the specific target audience for this meeting, members of a Brazilian HIV/AIDS support organisation were banned from attending.
Dr Wong-Rieger is also the President of the Canadian Organization for Rare Disorders, which is funded by more than twenty pharmaceutical/biotechnology companies. She is also President and CEO of t he Anemia Institute for Research and Education, which is lobbying on its website and on YouTube for government funding of Novartis’s oral iron chelator Exjadeâ„¢ (deferasirox). Dr Wong-Rieger has featured prominently in several Novartis press releases about Exjade.
Dr Wong-Rieger is also a member of international astroturf groups funded by the pharmaceutical industry. She is a Board member of the International Alliance of Patients’ Organizations, which opposes the use of generic medicines and advocates direct-to-consumer advertising. She is also a member of the Advisory Board of Patients and Patents, which has very strong industry links and objectives. In many ways, Dr Wong-Rieger and the organisations with which she is associated epitomise the globalisation of pharmaceutical industry-funded patient organisations.
The conference program states that the conference will provide an opportunity to discuss the role of the consumer in medicines policy. However, Dr Wong-Rieger’s and the Consumer Advocare Network’s ongoing championing of industry objectives greatly limits their credibility as unbiased sources of consumer views on medicines policies. We believe that Dr Wong-Rieger should not be permitted to offer any presentation at this conference as a designated consumer advocate. Furthermore, we urge you to ensure that there is genuine consumer representation at the conference, including a keynote speaker.
We look forward to your response, which can be directed to Jon Jureidini at the above address, or by email to .(JavaScript must be enabled to view this email address).
Yours sincerely,
Jon Jureidini
[Australia]
Chair
Healthy Skepticism
Anne Rochon Ford
[Canada]
Member
Healthy Skepticism
Joel Lexchin
[Canada]
Management Group member
Healthy Skepticism
Joana Ramos
[United States]
Management Group member
Healthy Skepticism
Melissa Raven
[Australia]
Management Group member
Healthy Skepticism
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