machado: stop inferring that financial support from pharma means that advocacy groups are ineffective, biased or puppets

certainly, men cheat. not all of them, though they are more likely to cheat than women . canada can get mind-numbingly cold in the winter. and while my neighbour who just arrived in toronto from jamaica is convinced that he has landed in a never-ending frigid version of hell, ontario is actually just behind british columbia in terms of having the mildest winter days and nights, the fewest frosty days and fewest nights with chilly temperatures.  do patient groups accept funding from pharmaceutical companies? yes. but just like how not all men are cheaters and most of canada is not in a perpetual deep-freeze despite what “they” say, concluding that the intentions of all patient advocacy organizations are dictated by those who provide the means for them to operate is not only wrong, but also hurtful to the millions of people they educate, guide and fight for every day.

of course, not every advocacy partners looks to pharmaceutical companies for financial support. in fact, many have made it part of their mandate not to have any affiliations with industry, preferring to only raise money through membership fees, donations and benefactors. but for those that do not have these options, grants and sponsorships are the next best thing — and these often come from pharmaceutical companies, but also government and corporations.

the role of industry in the decisions of patient groups is often questioned

just this week, u.s.-based the health care blog published an opinion piece by consultants kat mcdavitt and lisa bari. they called for the addition of a chief patient officer to the department of health and human services (hhs) to bring the patient voice into government planning and decision-making processes. while creating a role within the walls of government to amplify the needs of patients is something most of us can get behind — sign me up if such a job ever pops up on parliament hill — mcdavitt and bari sully their message a bit by emphasizing the role of “corporate interests” in deprioritizing the needs of patients. in particular, they make reference to patient advocacy organizations, writing that they, “while generally well-intentioned, are often structured around specific conditions and often are financially supported by pharmaceutical and biotech companies.”

like that’s a bad thing. it al so sounds a little blanket-y, no?

we can’t get past the “strings attached” perception of pharma funding

it’s also often insinuated that the perceived “strings attached” funding model between industry and patient groups means that organizations are loath to disagree with their funders or challenge them for fear of burning financial bridges. in a 2018 story, the cbc quoted sharon batt, a dalhousie university researcher who studies the links between patient groups and the pharmaceutical industry, as saying: “the companies will fund them as long as they’re onside with the same point of view that the companies have. if they start to contradict what the companies are saying, they’re going to get cut off.”

what we need most is for the dialogue around how patient groups get funding to change. let’s stop inferring that because financial support comes from industry, advocacy groups are somehow ineffective, biased or puppets for pharma. because without it, there would be no one to call when your kid is diagnosed with cancer and you need the healing network of people who share your experience; no guidance on how to get the only drug that will save your life that you can’t afford; and no one standing up to policymakers to make life better for the patients who are yet to come.