The Globe and Mail published an article on October 22nd by Kelly Grant entitled, “How pharma firms try to use funding to sway patient advocate groups.” ( This article, which rightly exposes some of the clear dangers inherent in the relationship between industry funders and patient groups, mentions two of HepCBC’s occasional funders, Janssen and AbbVie (which made our ears perk up!).

As a patient group which is largely funded by pharma, and which is asked to review new drugs for both the federal government (CADTH) and BC PharmaCare (see ), how can HepCBC avoid a dangerous conflict of interest – a veritable ethical swamp? This is not the first time we’ve grappled with this conundrum, but once again we feel it’s timely to acknowledge this situation and explain how we have chosen to deal with it, and why.

The article claims that in 2017 the president of patient group “Canadian Spondylitis (a rare form of arthritis) Association” (CSA) was asked to approve a focus-group report saying spondylitis patients were “‘strongly opposed’ to switching from their brand-name drug to a cheaper near-copy called a biosimilar…That conclusion aligned neatly with the viewpoints of Janssen and AbbVie, the pharmaceutical companies with the most to lose from biosimilar competition.” These two companies, which contributed 90% of the funding for CSA, made the brand-name biologic drugs (Remicade and Humira) whose markets would be affected by the new biosimilars. The problem was that the CSA, feeling there could be a conflict of interest, decided to take their name off the report as signers. The CSA realized that by so doing, they would potentially alienate their funders and risk being denied future funding. While denying that CSA’s actions had been a factor, Janssen did not agree to the group’s funding requests in 2017 and 2018. AbbVie, however, continued to fund the organization. Was Janssen’s de-funding of this patient group due to the CSA’s removing their name from the report, or was it coincidental? The answer is unclear to us; the jury is still out.

Grant looked at a second patient group, “Arthritis Consumer Experts,” (ACE) affected by the same situation, and found ACE had lost funding from both Janssen and AbbVie after they launched “an online hub about biosimilars which was in favour of carefully transitioning patients to cheaper biosimilars to save money for the health-care system.” A Janssen spokeswoman stated that ACE’s hub “supported a policy position that we believe undermined patient and physician choice.” Is this more a matter of supporting patient and physician choice, or of stifling a dissenting position? Again, it is hard to make an unequivocal connection here; however, if the company had suggested adding a second (dissenting or alternate) perspective rather than suppressing the patient group’s policy position, it would have appeared, at least, more respectful of the patient group’s autonomy. Hopefully patient groups and pharma together can agree on the value of such independence. Did the ACE lose funding because its patient advocacy stance was in conflict with Janssen’s and AbbVie’s interests? Again, it is hard to prove one way or another.

Grant also looked at 3 other patient groups dealing with a similar switch from biologics to cheaper biosimilars: Crohn’s and Colitis Canada, the Gastrointestinal Society, and the Arthritis Society. Grant was unable to provide any definitive answer as to whether the pharmaceutical companies actually were leveraging patient group’s dependence upon them for funding, to influence how the patient groups evaluated their products. But certainly the potential is there, and in the hands of unscrupulous pharmaceutical companies or patient groups (particularly groups representing diseases with a small population, where the opinions of a tiny handful of patients could have disproportional influence), there could lie dangers. Feasibly, improved or cheaper drugs could be denied approval or their uptake slowed (as may be in the case of the biosimilars) in favour of older drugs; or conversely, new drugs (with extended patents) could be approved which are of only minimal improvement over older or cheaper ones.

Where does this leave Canadian patient groups such as HepCBC which want only the very best for patients, yet may occasionally find themselves on opposite sides of an issue with their funders (the most obvious area of conflicting interests is treatment costs), and do not want to lose the very funding which allows them to continue advocating for patients? Here are some suggestions:

  • Patient groups must become aware of new laws and regulations regarding such relationships, and ensure they are being strictly followed by both parties (see In particular see Annex A, pp 52-53).
  • Patient groups must be honest and forthright in their evaluations of drugs and treatments, not allowing fear of de-funding by the manufacturers to cloud their judgments in any way.
  • Patient groups must be prepared for the possibility that their grant applications will occasionally be turned down for a variety of reasons. To prevent this being disastrous, diversification is key: Apply to as many different funders as you can, and seek diversity such as funding from government, foundations, and industry. We know this is more easily said than done.
  • Hepatitis C patient groups, in particular, were almost totally excluded from government funding for several decades, which makes them particularly dependent on the pharma industry for support. Whenever we get a chance, we should remind politicians (and business owners) how government (and non-pharma corporate) support of these small groups can be an excellent benefit – not only to patients, but to the health system as a whole.

HepCBC has recently had to close its offices and go “back to the kitchen table,” run only by volunteers, because our funding sources slowed down in a year when our expenses increased. We will continue to apply for funding from pharmaceutical companies and government in the new year and hope for the best. Meanwhile, we’ll hold ourselves to the most rigorous standard of honesty in our appraisals of drugs, and in our advocacy for patients. We believe that most of us (in both industry and patient groups) are acting in good faith, and that in most cases the fears expressed in this article are not realized. We don’t quarrel with the author, however. Thanks, Kelly Grant, for reminding us there are inherent conflicts in pharma funding of patient groups, that patient group decisions affect real people, and that these relationships and decisions are being monitored by people who care.

– Cheryl R. Reitz, M.A.