machado: stop inferring that financial support from pharma means that advocacy groups are ineffective, biased or puppets
it's time to recognize patient and caregiver advocacy organizations for the critical role they play in the healthcare system. without them, 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 and no one standing up to policymakers to make life better for the patients yet to come.
6 minute read
apparently who helps to keep an organization's lights on is a reflection of the quality of good that they do.
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blanket statements are always wrong. “all men cheat,” “it’s always freezing cold in canada,” and “patient organizations get financial support from pharmaceutical companies so therefore, they do/write/say whatever these companies tell them to; are ineffective and compromised because of these connections; and don’t fully represent patient needs for fear of losing funding. all of these are examples of annoying and potentially dangerously misleading generalizations that are used to “blanket” a group of people or things, with limited accuracy.
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.
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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.”
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like that’s a bad thing. it also sounds a little blanket-y, no?
this piece came on the heels of two conversations that i had last month — one with a high-profile association and the other with a healthcare strategist — both people touched not so lightly upon the role that industry plays in the operations of patient advocacy groups. it’s a topic that rears its tiresome head pretty often, poked by those outside of the non-profit world, where apparently who helps to keep your organization’s lights on is a reflection of the quality of good that you do.
that pharma money is everywhere isn’t at all a worthwhile rebuttal to this accusation, but, well, pharma money is everywhere. from funding research, building hospitals and paying physician speaker fees to supporting academic programs, biotech companies and medical continuing education programs, you’d be hard-pressed to find an area not touched by industry dollars in some form — much of it making some really good things happen for patients, healthcare professionals and our economy. just saying.
we can’t get past the “strings attached” perception of pharma funding
the same can be said for the funds that are given to patient groups. most often in the form of unrestricted grants, which means that while the pharmaceutical company may ask for a proposal of what the money will be used for (for example, a conference, website development, muffins for a support meeting) and a summary of the outcomes, it has no say in agendas or content. when i founded my non-profit 16 years ago, funds for a conference, for instance, would often come with a request that logos be added to promotional materials, an official testament to the company’s contributions and interest. over the years, this has increasingly moved toward the more innocuous “support provided by a research-based pharmaceutical company.”
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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.”
a couple of things on this. there’s a boundary that sits between most industry and advocacy group partnerships. especially these days, when criticism of pharmaceutical companies is high, and many have loudly declared commitments to patient engagement and supporting advocacy missions, no company wants to be on the wrong side of that line.
in my experience, the cml community has navigated this path brilliantly, building strong and open relationships with a major funder in the cml space. our community talks openly about issues that i am sure make their teams cringe all the time — like the intolerable side effects of medications, the lack of access in some countries and clinical trial designs that don’t factor in the patient experience. further, the global cml community has facilitated community advisory board meetings with the manufacturers of cml drugs in which honest and critical discussions have happened. and while some of those companies have left the table after their medication’s patent expired — which is a whole other story — the relationship with the main funder continues. our community’s feedback, both positive and negative, and while awkward at times, continues to make things better for people living with cml.
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could there be more transparency among advocacy groups and pharma? sure, although the advocacy organizations i know are well-versed in unabashedly disclosing where they get their money from and have unending proof of what they spend it on. a very smart colleague always says, “i will take money from anyone as long as i am helping people.” hear, hear.
there is, of course, another side, which is why patient organizations are so dependent on pharma money in the first place. perhaps we need to be rethinking the funding models for advocacy groups and make it so that there are more financial boosts from government, institutions and non-pharma corporations, among other things.
but at the end of the day, how much does it matter where the financial support comes from? patient and caregiver organizations are key stakeholders in the healthcare system. they offer valuable lived experience and fill gaping holes in care — and in case you haven’t noticed, they are the ones propping up a system that’s barely showing up for patients and healthcare providers.
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.
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we’re talking about saving lives — in many cases, literally. how can that possibly be up for debate?
lisa machado is the executive producer of healthing’s advocacy & better health. send her a note at lmachado@postmedia.com.
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