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Durhane Wong-Rieger: Associations with the pharmaceutical industry

Dr Durhane Wong-Rieger (PhD) has strong links with many pharmaceutical companies via a loose network of industry-funded patient-related organisations and several marketing/public relations companies. Wong-Rieger is very prominent in the consumer advocacy field in Canada, but in recent years she has also been involved in meetings and events in Europe and Brazil and Pakistan.

Wong-Rieger is the Chair, President, CEO, or Secretary for at least six industry-funded organisations in Canada. At least four of these organisations share the same Toronto office (151 Bloor Street West, Suite 600, Toronto) , with the same fax number and the same or similar phone numbers. These organisations bear the hallmarks of 'astroturf' lobby groups – front groups that are set up to lobby for commercial or other interests in the guise of community groups.

Several of these organisations would be likely to be perceived as charities, but only the Canadian Organization for Rare Disorders is included in Canada Revenue Agency's list of Canadian registered charities [ www.cra-arc.gc.ca/tx/chrts/nln_lstngs/cnrg_ntrm-eng.html ].(1)

A number of key themes dominate the public face of the groups with which Wong-Rieger is involved:

• the need and right of patients to participate in policy processes in relation to access to drugs, both internationally and within specific jurisdictions
• the need and right of patients to receive better information about drugs; this has included a consistent and explicit call for legalisation of direct-to-consumer advertising
• the need and right of patients to have better and faster access to drugs
• the need for the health system to be patient-focused/centred/driven
• the claim that Canada is the only developed country (or one of very few) without an orphan drug policy
• barriers inherent in Canada's single-payer healthcare system

Consumer Advocare Network

www.consumeradvocare.org

Website set up on WardNet (see below) server on 5 July 2002.

Wong-Rieger is Chair of the Consumer Advocare Network.

According to the website, the Network is 'a national network of healthcare consumer organizations and individuals in Canada' [ www.consumeradvocare.org]. However, there is no information on the website about who these organisations and individuals are. Nor is there any information about staff, and there are no annual reports.

The Network's origins are strongly linked to industry advocacy for DTCA in Canada According to Batt (2002):

In October 2000 [Wong-Rieger] invited representatives from the pharmaceutical industry, the media and patient organizations to meet and discuss DTCA. This process spawned a Joint Working Group and the Consumer Advocare Network…. In consultation with her advisory group, she released a position paper last fall arguing for regulated DTC promotion of prescription drugs.

In 2002, Wong-Rieger published a paper arguing that Canadians 'demand' regulated DTCA. Similarly, in 2003, she published a paper arguing that consumers have a 'fundamental right to information about prescription drugs, which includes direct-to-consumer advertising, or promotion, of drugs' (Batt 2005, p. 10). The paper is not currently available on the Network website, but an abstract is:

This paper calls upon Health Canada to establish an appropriately regulated environment for direct consumer access to information about prescription drugs. Currently, Canadians are bombarded with direct-to-consumer (DTC) advertising emanating from the United States about American drugs. At the same time, pharmaceutical companies are not allowed to promote awareness of prescription drugs licensed in Canada. As a result, Canadian consumers often know about American drugs but very little about drugs available in Canada.
[ www.consumeradvocare.org/index.php/ca/content/view/full/57]

The pharmaceutical industry was closely involved in the preparation of this paper:

In a nineteen-page brief recently submitted to Health Canada, the Consumer Advocare Network called for the legalization of DTCA. A review of the brief reveals that of the twenty-four members of the Joint Working Group who prepared it, twelve were from the pharmaceutical industry or pharmaceutical marketing and/or consulting firms. Some of the other twelve were from organizations known to receive significant support from pharmaceutical companies…. Perhaps not surprisingly, the Network ended up lobbying for changes to legislation that better serve the pharmaceutical industry's interests. (Downie 2006, pp. 436-437)

The Network has also lobbied against the Canadian Agency for Drugs and Technologies in Health's Common Drug Review, which is similar to the process used by Australia's Pharmaceutical Benefits Advisory Committee to decide whether new drugs should be listed on the Pharmaceutical Benefits Scheme. In Toronto on 21-22 September 2002, Chris Ward, and his PR organisation, Ward Advocacy Communications (see below), facilitated a Consumer Advocare Network meeting to discuss – and criticise – the Common Drug Review. Participants were 'an ad hoc group of concerned Canadians' [www.hepcbc.ca/bulletin/Nov2002.pdf ]. On 23 April 2007, Wong-Rieger, in her capacity as President of the Canadian Organization for Rare Disorders (see below), again publicly criticised the Common Drug Review [http://web.archive.org/web/20080509070603/http://www.wardhealth.com/index.php/en/events/newsmaker_breakfast_the_cdr_and_rare_diseases].

The Network received funding from Canada's Research-Based Pharmaceutical Companies (Rx&D) , for a highly publicised cross-border bus trip on 24 July 2003 from Saint John, New Brunswick, to Bangor, Maine, for a group of Canadian patients to receive 'health services not readily available to them at home' [www.consumeradvocare.org/index.php/ca/content/view/full/65 ] . The bus trip was organised by Chris Ward of PR organisation Ward Health Strategies (see below) [www.ipi.org/ipi/IPIPressReleases.nsf/0/5350615e774d6ff285256c0f006967e4?OpenDocument ] .

In February 2008, the Network jointly hosted a conference in Brazil on access to medicines [www.abrale.org.br/fique_atualizado/interno.php?id=716 ] . 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 [ http://liveweb.archive.org/http://lists.essential.org/pipermail/ip-health/2008-April/012520.html]. The conference was supported by an unconditional educational grant from the Pharmaceutical Research and Manufacturers of America (PhRMA) (Froehner 2008). At the conference, there was substantial criticism of the World Health Organization's Intergovernmental Working Group on Public Health, Innovation and Intellectual Property (IGWG) deliberations about international patent protection, which are perceived as a threat by the pharmaceutical industry (Weissman 2008).

Canadian Organization for Rare Disorders

www.raredisorders.ca

Website set up on the WardNet server on 20 February 2006.

Wong-Rieger is President of the Canadian Organization for Rare Disorders (CORD).

Elisabeth Fowler, Partner of PR company World Health Advocacy (formerly Vice-President of Ward Health Strategies; see below), is a Board Member of CORD [ www.cord.ca/index.php/site/about_us ].

According to its website, CORD is 'Canada's national network for organizations representing all those with rare disorders' [ www.cord.ca/index.php/site/about_us ]. The website lists 36 consumer organisations as affiliate members [ www.cord.ca/index.php/site/membership/affiliate_group ].

CORD was registered as a Canadian charity on 1 January 2006 [ www.cra-arc.gc.ca/tx/chrts/nln_lstngs/cnrg_ntrm-eng.html].

The predecessor of CORD was founded in 1995. CORD 'reorganized and revitalized itself' in 2004. In 2005, Wong-Rieger became President and ' made room and staff available in her own [health care consulting] company's Toronto office for the national headquarters' [National Post supplement, via [http://web.archive.org/web/20080405195426/http://www.raredisorders.ca/index.php/site/rare_disease_day ].

CORD is funded by 25 pharmaceutical/biotechnology companies (see table). CORD is also funded by Bayshore Home Health, which provides marketing services, including product, patient and physician support services, to pharmaceutical companies, and Mark Krueger & Associates, a New York PR company (see below) [ http://web.archive.org/web/20090227052502/http://www.raredisorders.ca/index.php/site/membership/corporate ].

Institute for Optimizing Health Outcomes

www.optimizinghealth.org

Website set up on WardNet server on 30 January 2000.

Wong-Rieger is President and CEO of t he Institute for Optimizing Health Outcomes (IOHO).

The Board of Directors includes unspecified 'physicians, allied health professionals, health educators, and representatives of the patient/ consumer community' [www.optimizinghealth.org/index.php/site/about_us ].

According to its website, IOHO 'brings together individuals and organizations with the commitment, experiences, and expertise to bring the vision of optimal health to reality' [www.optimizinghealth.org/index.php/site/about_us ]. The individuals and organisations are not identified.

IOHO is a member of the Ontario Patient Self Management Network [ www.optimizinghealth.org ] , and was a leading partner in its establishment [www.optimizinghealth.org/index.php/site/partnership_projects ] .

In May 2008, Wong-Rieger was a featured speaker representing IOHO at the 1st Pan American Thalassemia Conference in Rio de Janeiro [ http://sbhh.com.br/rss/noticia.php?id=16 ].

Ontario Patient Self Management Network

www.ontpsm.net

Website set up on WardNet server on 30 Dec 2005.

Wong-Rieger is Chair of the Ontario Patient Self Management Network (OPSMN).

OPSMN was launched on 6 March 2006 by a consortium of healthcare institutions and patient associations, including the Institute for Optimizing Health Outcomes, purportedly 'to bring patient self management to the people of Ontario' [Ontario Self Management Network Launches to Give Patients Control, via http://web.archive.org/web/20080808134314/http://www.ontpsm.net/archives.php].

Anemia Institute for Research and Education

www.anemiainstitute.org

Website set up on WardNet server on 19 January 2000.

Wong-Rieger is President and CEO of t he Anemia Institute for Research and Education (AIRE).

AIRE is a program of the Institute for Optimizing Health Outcomes [ www.anemiainstitute.org ].

AIRE is a self-described 'non-profit organization dedicated to generating and sharing knowledge about anemia as a serious condition', with three mandates: research, education, and advocacy [www.anemiainstitute.org/index.php/en/General-Information/About-Us ].

AIRE was funded in its first year (and perhaps subsequently) by Janssen-Ortho [www.marketwire.com/press-release/National-Diamond-Public-Relations-343256.html ]. AIRE has also received funding from other pharmaceutical companies, including Novartis, ApoPharma (Apotex), and Alexion Pharmaceuticals [www.anemiainstitute.org/index.php/en/content/download/76/303/file/2007%20Anemia%20Conference%20Program.pdf]. In 2004 it published anemia management guidelines developed using funding from ' multiple pharmaceutical companies' [www.patientsorganizations.org/attach.pl/774/440/Collaborating%20in%20Primary%20Care%20to%20Deliver%20Patient-Centred%20Care%20-%20Durhane%20Wong-Rieger.ppt ]. Wong-Rieger has featured prominently in several press releases about Novartis's oral iron chelator Exjade™ (deferasirox); sometimes interviews with her are offered [www.ca.novartis.com/news/en/2005/pr_54.shtml]. Exjade is also promoted on links from the AIRE website [Ontario Residents click here / All other provinces click here, www.anemiainstitute.org ] and in an AIRE video posted on YouTube [www.youtube.com/watch?v=QC6J6zVpdsU ]. Wong-Rieger also promoted Exjade at a thalassaemia conference in Pakistan in 2007 [ www.thalforum.ca/forums/showthread.php?p=8632 ].

Canadian Fabry Association

www.fabrycanada.com

Wong-Rieger is Secretary of the Canadian Fabry Association (CFA).

CFA is an affiliate member of the Canadian Organization for Rare Disorders [http://www.fabrycanada.com/index.php?option=com_wrapper&Itemid=41 ].

According to its website, CFA is a non-profit organisation 'to raise awareness and educate the public about Fabry disease, a very rare life threatening genetic, lysosomal storage disorder'. Its primary agenda seems to be lobbying for governments to provide greater access to enzyme replacement therapy (ERT), which costs approximately $250,000 per patient per year [ http://web.archive.org/web/20090322020837/http://www.fabrycanada.com/content/view/10/9/].

CFA has three sponsors: Shire, Genzyme, and Amicus Therapeutics. CFA held a patient information meeting in Ottawa on 20 September 2008. According to the online invitation [http://web.archive.org/web/20090322020907/http://www.fabrycanada.com/content/view/2/62/ ] , lunch was to be provided at no cost, attendees were to be reimbursed for travel costs, and representatives from Shire, Genzyme, and Amicus Therapeutics might be in attendance. The event was organised by Elisabeth Fowler, World Health Advocacy Partner.

Canadian Hepatitis C Network

www.canhepc.net [not functioning 22 September 2008; mentioned http://web.archive.org/web/20080820135912/http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-41.html]

Wong-Rieger is Secretary of the Canadian Hepatitis C Network (CHCN).

CHCN has a very low profile, and may be defunct, although Wong-Rieger's role as Secretary is included in her brief CV on the website of Health Canada's Expert Advisory Committee on the Vigilance of Health Products, last modified on 17 December 2007 [ www.hc-sc.gc.ca/dhp-mps/medeff/eacvhp-ccvrps/memb-comp-eng.php ].

International Alliance of Patients' Organizations

www.patientsorganizations.org

Wong-Rieger is a member of the Board of the International Alliance of Patients' Organizations (IAPO), elected at the Annual General Meeting on 29 March 2007 [www.patientsorganizations.org/attach.pl/2/707/Minutes%20of%20IAPO%20AGM%202007.pdf ].

Chris Ward is an IAPO member, apparently in his capacity as a member of the Asthma Society of Canada [ www.patientsorganizations.org/attach.pl/2/707/Minutes%20of%20IAPO%20AGM%202007.pdf ], and voted at the 2007 AGM.

IAPO is a self-proclaimed 'unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world' [www.patientsorganizations.org/index.pl]. However, it restricts its definition of a patient to 'a person with any chronic disease, illness, syndrome, impairment or disability' [www.patientsorganizations.org/index.pl ], clearly meshing with the agenda of pharmaceutical companies that produce drugs for chronic conditions.

IAPO was registered as a not-for-profit foundation in the Netherlands in 1999 [www.patientsorganizations.org/showarticle.pl?id=1&n=110 ].

IAPO has strong links with the pharmaceutical industry. According to IAPO Chair Albert van der Zeijden (2003):

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.

According to Herxheimer (2003):

The European Commission prefers to hold discussions with these federations rather than patient and consumer groups, apparently because, unlike most voluntary health organisations, they claim to represent patients in many countries.

Herxheimer claimed that IAPO, along with other industry-linked organisations, 'successfully lobbied the commission to propose allowing industry to provide direct to consumer "information" about prescription medicines'. Van der Zeijden (2003) denied that IAPO promoted direct-to-consumer advertising.

IAPO's website lists 13 corporate partners between 2004 and 2008, providing more detail about the relationships than is usually the case. In 2008, there are seven Gold and five Silver Industry Partners, representing a minimum of [US?]$500,000 [www.patientsorganizations.org/showarticle.pl?id=222;n=122] . Industry partners' numerous benefits and entitlements include:

an opportunity to work with the patients' movement at the international level… regular involvement and consultation on key healthcare issues…. entitled to attend one/two face-to-face meetings with other Partner Representatives and IAPO's Governing Board per year to plan collaborative activities, exchange views on current issues, discuss industry-patient relations, and work on developing the Partners Framework further…. the opportunity to give advice during the development of the annual Congress Programme to the Programme Facilitator and the Organizing Committee.

On 3-4 December 2006, IAPO convened a workshop in Brussels on biosimilar medicines, of which IAPO is critical. Wong-Rieger chaired the workshop, with organisational support from Mark Krueger & Associates. Jansen-Cilag, whose parent company Johnson & Johnson is an Industry Partner, provided an 'unrestricted educational grant' [ www.patientsorganizations.org/attach.pl/727/448/IAPO%20 Biosimilars%20Workshop%20Report.doc ] .

Patients and Patents

www.patientsandpatents.com

Website set up on the WardNet server on 27 July 2007.

Wong-Rieger is a member of the Advisory Board. Another member is Dr Kristina Lybecker, who was a consultant to Ward Health Strategies in 2007 [http://web.archive.org/web/20090111063718/http://www.patientsandpatents.com/index.php/us/who_we_are/advisory_board ] .

Patients and Patents is a group that suddenly appeared in 2007, circulating a 'Patient Declaration on Medical Innovation and Access', which argues that it is essential that patient groups be directly involved in WHO's Intergovernmental Working Group on Public Health, Innovation and Intellectual Property [www.patientsandpatents.com/index.php/us/positions/patient_declaration_on_medical_innovation ].

Patients and Patents is governed by a seven-member advisory board. According to Essential Action (2008):

Six of the seven members of the advisory board are linked to the brand-name pharmaceutical industry, either directly as an individual or through their primary organization, and the seventh member has at least a weak tie to the industry.

A high proportion of the signers of the Patient Declaration are also connected to the brand-name pharmaceutical industry. We found 61 of 110 of the signers of the Declaration have industry ties.

Ward Health Strategies / Ward Advocacy Communications / World Health Advocacy / WardNet

www.wardhealth.com: Ward Health Strategies, World Health Advocacy

www.whadvocacy.com [diverts to www.wardhealth.com]

www.wardadvocacy.com [diverts to www.bayerhealthcareperspectives.com]

www.wardnet.com : WardNet

Chris (Christopher) Ward is a former Canadian Minister of Education and Government House Leader. After leaving politics, he was Vice-President of Strategic Planning and Communications for Canada's Research-Based Pharmaceutical Companies (Rx&D) [http://en.wikipedia.org/wiki/Chris_Ward_(Ontario_politician) ]. He then established Ward Health Strategies, a public relations company focusing primarily on health policy. Ward has collaborated with Wong-Rieger since at least 2002. Ward Health Strategies has subsequently become World Health Advocacy, probably in 2008.

Chris Ward is not listed as a staff member of World Health Advocacy. However, James Ward – his son? – is a Partner. James has 'extensive experience in managing successful alliance development campaigns including patient workshops on Global IP in South America and in Europe and "reverse bus trips" of patients from Canada to the U.S. to highlight access barriers inherent in a single payer health care system' [ http://www.wardhealth.com/index.php/en/about_us/staff ] ; presumably the bus trips were those organised in 2002 and 2003 by the Consumer Advocare Network [www.consumeradvocare.org/index.php/ca/content/view/full/65].

James Ward also runs WardNet, a website hosting and design service, which hosts the websites of several organisations with which Wong-Rieger is involved.

Elisabeth Fowler, now a Partner of World Health Advocacy, and until recently Vice-President of Ward Health Strategies [http://web.archive.org/web/20080511195420/http://www.wardhealth.com/index.php/en/publications/reports_and_research_papers/patient_centred_care_does_asthma_pass_the_test], was previously Director of Partnership Development and Acting Director of Provincial Government Affairs (Quebec) for Rx&D, where she was responsible for 'developing and implementing national stakeholder and professional relations strategies' [http://web.archive.org/web/20090517053358/http://www.wardhealth.com/index.php/en/about_us/staff ] .

Mark Krueger & Associates

www.kruegerandassociates.com

Mark Krueger & Associates is a New York company that specialises in 'health care constituency relations', including 'patient group relationships', which can be industry code for 'astroturfing'.

Mark Krueger & Associates is a 'Corporate Friend' of the Canadian Organization for Rare Disorders [www.raredisorders.ca/index.php/site/membership/corporate ].

On 3-4 December 2006, Mark Krueger & Associates assisted Wong-Rieger to run an IAPO workshop in Brussels on biosimilar medicines [www.patientsorganizations.org/attach.pl/727/448/IAPO%20Biosimilars%20Workshop%20Report.doc ] .

1. All URLs in this document were accessed 22 September 2008.

References

Batt, Sharon (2002). You, your breast cancer group and prescription drug ads. Ottawa: Canadian Breast Cancer Network. www.cbcn.ca/en/?email_page=true&section=1&category=801&regionid=&page=5338 (22 September 2008).

Batt, Sharon (2005). Marching to different drummers: Health advocacy groups in Canada and funding from the pharmaceutical industry. Toronto: Women and Health Protection. www.whp-apsf.ca/pdf/corpFunding.pdf (22 September 2008).

Downie, Jocelyn. (2006). Grasping the nettle: Confronting the issue of competing interests and obligations in health research policy. In Colleen M. Flood (Ed.), Just Medicare: What's in, what's out, how we decide (pp. 427-448). Toronto: University of Toronto Press. http://books.google.com.au/books?isbn=0802080022 (22 September 2008).

Essential Action (2008, April 28).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". Washington DC: Essential Action. www.essentialaction.org/access/uploads/patients.patents.pharma.pdf (22 September 2008).

Froehner, Juliano (2008, April 15). South American patients speak out on medical innovation. Essential Innovation. http://web.archive.org/web/20090207172839/http://www.essentialinnovation.org/wordpress/?p=225 (22 September 2008).

Herxheimer, Andrew (2003, May 31). Relationships between the pharmaceutical industry and patients' organisations. BMJ, 326(7400), 1208-1210. www.bmj.com/cgi/content/full/326/7400/1208 (22 September 2008).

van der Zeijden, Albert (2003, August 4). Corrections – the International Alliance of Patients' Organizations. BMJ, 326. [rapid response]. www.bmj.com/cgi/eletters/326/7400/1208#35352 (22 September 2008).

Weissman, Robert (2008, May 1). Big Pharma digs in. The Huffington Post. www.huffingtonpost.com/robert-weissman/big-pharma-digs-in_b_99666.html (22 September 2008).

Wong-Reiger [sic], Durhane. A case for regulated direct-to-consumer promotion of prescription drugs. Toronto: Advocare (Consumer Advocare Network), August 18, 2003. Accessed online December 1, 2004 at: www.consumeradvocare.org/index.php/ca/content/view/full/57/ [cited by Batt 2005].

Wong-Rieger, Durhane (2002). Canadians demand regulated direct-to-consumer advertizing of prescription drugs. Canadian Breast Cancer Network. www.cbcn.ca/en/?section=1&category=801&regionid=&page=5339 (22 September 2008).

Posted on 22 Sep 2008 - 11:36 AM by Robyn Clothier.

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