Funding choices don’t define our worth. What matters is the resilience, collaboration and the dignity we build together.
September and October bring out the teal and pink, the runs and the walks, the endless merch of cancer awareness season. Forgive me if I don’t play nice at this parade: I’m angry. Because behind the pageantry, the real question remains – are we judged by how loudly we police each other’s purity or by what we build together?
I first came to advocacy as a young mom with breast cancer. I hadn’t planned to take on that role, but the diagnosis changed everything. Like many others, I stepped forward not because I had academic credentials but because lived experience demanded it. Cancer altered my body and my future, and suddenly I found myself at the table, speaking for myself and for others who needed a voice.
When Patient No More: The Politics of Breast Cancer was published in the early 1990s, I was still finding my footing as both a survivor and a new advocate. I had spent a year co-chairing the National Forum on Breast Cancer with the book’s author. The Forum had emerged from testimony we both gave at the House of Commons. A parliamentary sub-committee soon released its report, recommending a national conference to build a survivor network. The government agreed, and the National Forum was born in 1993 – a groundbreaking effort bringing survivors, researchers, physicians and policymakers together to chart a shared path forward.
The subtle contempt for grassroots advocates expressed in Patient No More took me by surprise. At the time, I felt it overlooked the grit, risk-taking and community leadership that defined so many of us. Still, I moved on. There was too much work to be done, too many people to support and too many battles to fight to linger on a critic’s judgment.
Years of academic publications and expert researchers focused on discrediting pharmaceutical funding followed. The patient advocacy movement was viewed through the lens of systemic critique. The women being written about had freely offered their stories and quotes about corporate funding in the context of strides in the cancer movement because we shared friendships and common cause. Though we were once locked in arms, we became objects in the research processes we had long lobbied to humanize.
Later, when Health Advocacy, Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement appeared, I was in the midst of chemotherapy for ovarian cancer. I was too exhausted and preoccupied to respond, though I felt unsettled by the portrayal of advocates like me.
Now, facing a recurrence, I want to set the record straight. My response is late, but the message feels more urgent than ever.
The academic and I represent two archetypes within the same movement.
The critic: a chronicler, motivated to expose the dangers of pharmaceutical influence and quick to frame the story as a battle of the pure versus the compromised. Standing somewhat apart, never part of the tactile embrace of church basement support groups, observing with sharp clarity but also with distance.
The practitioner: a survivor, a “hugger” and storyteller, motivated to improve lives through action, coalition-building and imperfect but transparent choices.
I carried those contradictions in real time, scarred by illness but refusing silence.
In this framework, many advocates are cast in a morality play: either resisting or succumbing to pharmaceutical influence. My role complicates this choice. As co-chair of the National Forum on Breast Cancer in 1993 alongside the academic, I – along with many others – helped to build the networks that connected survivors, physicians, researchers and policymakers. We embodied the doer in the arena, working through collaboration and dialogue rather than the critic outside, assigning judgment.
From my perspective, the portrayal of grassroots advocates carries an undercurrent of contempt – dismissing the grit, risks and leadership. This has created a profound tension: while academics focused on pharmaceutical funding interpreted the patient advocacy movement through the lens of systemic critique, grassroots advocates experienced it as lived trial-and-error in which compromises were debated and made in the open.
The women I worked alongside were not hiding anything. We disclosed funding arrangements, published agreements and measured outcomes. We weren’t ashamed of the compromises we made; we were transparent about them. We were mothers, daughters, workers – ordinary women who became advocates because the work needed to be done. We stumbled, we erred, but we kept getting back up. That’s how we grew into leaders: by coupling conviction with humility, compassion with resilience.
The true challenge in the movement wasn’t the existence of funding agreements. It was the tendency to divide ourselves into camps – friend or enemy, righteous or tainted – when what we needed most was conversation, trust, and solidarity. Imagine if the 375+ cancer groups in Canada had collectively created a framework for transparency and collaboration instead of being cast as rivals. Imagine what more we could have built together.
Patient advocacy at its best is not about purity. It’s about presence. It’s about showing up, with all our raw, unpolished language and stories, to demand dignity for people whose lives are already heavy with suffering.
As Theodore Roosevelt said: “It is not the critic who counts … The credit belongs to the man who is actually in the arena.”
That’s where I have spent my life. Sometimes wrong, sometimes right, always trying. And if there’s one lesson worth carrying into every teal run and pink walk this fall, it’s this: our value lies not in purity tests, but in what we dare to build together.
This level of breast cancer advocacy is way above my head. My breast cancer experience – 39 years ago – led to the initiation of a support group with Pat Kelly in Burlington, ON.
I was happy with sharing my breast cancer experience with others on a practical and emotional level. But it was apparent , even then, that Pat was taking the advocacy issue to a higher level.
She continues to seek recognition and solutions for her concerns to this day – and remains a true survivor.
Thankyou my good friend – it’s time we got real about the eliteism that has shadowed the movement for so long – hat’s off to you and our many happy YMCA support group meetings sitting in a circle in the kids chairs … what a picture.
Yesterday’s exchange with Fugh-Burman was brisk; today I’m choosing receipts over rhetoric.
The issue isn’t “academics vs patients.” It’s **governance and power**—how incentives, disclosure, and authorship shape what counts as evidence and whose lives get cited. Influence risks are real and **universal** (industry, government, philanthropy, academia). The remedy is shared standards that apply to everyone: full public disclosure, **no editorial control** by any funder, refusal rights, community governance, and shared authorship with veto power when lived experience is used.
To move from argument to data, I’m collecting advocate experiences (good, bad, complicated) with partnerships to co-draft a practical COI/governance checklist both scholars and advocates can use.
5 minutes, anonymous: https://www.surveymonkey.com/r/PWB72X7
Finally Fugh-Berman, you closed off in your comment that affiliation “misses the heart of the issue.” On that we agree—because any ethical pursuit without heart misses meaning. That’s the standard I’m working toward.
Pat Kelly never names Sharon Batt, whom she attacks in this piece, instead coyly calling her “the academic, “the critic”, a “chronicler”. None of which are particularly effective insults: Sharon is indeed a respected academic, a brilliant critical thinker, and as a journalist might not take offense at being called a chronicler. It is, however, both insulting and inaccurate for Kelly to accuse Batt of being “the critic outside, assigning judgment” who has “subtle contempt for grassroots advocates”. This is, besides being vague, ridiculous.
Sharon Batt co-founded Breast Cancer Action Montreal, an influential advocacy group that eschewed pharma funding; she has an indisputably strong background in grassroots advocacy. Batt has documented her own experience with breast cancer, in Patient No More, with remarkable objectivity and depth of research; it bears noting that this book was written long before she obtained her PhD, and long before she became an academic researcher.
The pursuit of truth is not limited to academics, and advocacy without reliable evidence is worthless. Advocacy that promotes industry marketing messages is worse than worthless; it is harmful. It’s not a bad thing to look at any of our work “through the lens of systemic critique”. That systemic critique, of course, has shown that industry funding of groups or individuals results in those groups or individuals conveying marketing messages. Even when funding doesn’t buy favor for a sponsor’s drugs, it buys silence on drug harms and drug prices. And yes, the references for these studies are in Batt’s book, Health Advocacy, Inc.
Or see, for example, Joel Lexchin’s article (Pharma company funding for patient advocacy groups needs to be transparent on patient advocacy groups, in The Conversation, published on October 2, 2024), which points out that after the Canadian Organization for Rare Disorders took almost half a million dollars over five years from four major drug companies, it took a public stand against legislation that would lay the groundwork for a universal pharmacare plan. In another example, 28 patient groups attempted to stop the Patented Medicine Prices Review Board from reforming the regulation of drug prices. For more examples, and historical context, see the academic article on patient advocacy groups that I co-authored with Sharon Batt (Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective, published in the Journal of Bioethical Inquiry on January 17, 2020)
I have collaborated with Sharon Batt on various projects for decades and have the utmost respect for her incisive mind, deep research, and nuanced analyses. And Batt is hardly an outside observer. As a triple cancer survivor, Batt has plenty of “lived experience”.
The fact that Pat Kelly is apparently involved in a “survey capturing advocate experiences (good and bad) with industry partnerships” that is “in academic review now” is surprising for one who thinks so poorly of academics.
Any advocate who takes industry money and thinks that their views are not influenced is not facing reality. The so-called academic vs patient tension described by Kelly is a false dichotomy. The real difference here is between independent activism that flows from the grassroots up and activism that is influenced subtly and directly by industry funding. Whether one activist has an academic affiliation and another does not misses the heart of the issue.
Adriane, thanks for engaging—but your response reads as knee-jerk and defensive. Not surprising, given you’re reinforcing the same circle of interests and citations. What is surprising is the posture: you glorify Batt’s achievements while ignoring my own body of work. Did you bother to learn who I am before you came roaring out of the ivory tower, treating my views as beneath the three of you—Batt, Lexchin, and yourself? That self-referential shaming loop may win debate points; it doesn’t move a single person to action.
A few crisp points:
Not “academics vs patients,” but posture and power. I’m pushing back on a mode that analyzes frontline advocates rather than working with them.
Power + incentives matter. Academia runs on salaries, grants, sabbaticals, and publication prestige; most advocates run on unpaid time and lived risk. That asymmetry shapes who gets the mic and what “counts” as evidence. The sheer length of your reply—dwarfing frontline comments—is a tell of that dynamic.
Funding risk ≠ universal capture. Influence is a governance problem, not a scarlet letter. Fix it with full public disclosure, no editorial control by any funder (industry, government, or philanthropy), refusal rights, community governance, and COI ledgers—for scholars and advocates.
Disclosure symmetry. If advocates list sponsor dollars, academics should list grant sources, consultancies, honoraria, and the career incentives tied to particular stances.
Build evidence together. I’m fielding an independently reviewed survey on all partnerships to surface harms and benefits. I’ll share the instrument and guardrails so standards are co-owned.
One more thing your comment didn’t make room for: many of us write and work under a palliative diagnosis. That perspective isn’t a rhetorical device; it’s an ethical stake. Being framed as case material—especially while in treatment—extracts from our openness and wounds the communities doing the labour. Scholarly critique is welcome; so are reciprocity, consent, and care for the people whose lives you cite.
A whiff of humanity would help balance your outrage. Some of us are working under a palliative clock. We’ll be gone soon enough; you’ll have a clear runway to publish more—whatever this is. At least acknowledge the cost extracted from those living it.
And thanks again for speaking your quiet ugly side out loud—now we see the whole person, not just the sterile critic.
Finally, if patient-oriented research (POR) is serious about shared power, then governance—not personalities—should be reviewed: conflict-of-interest practices, authorship and veto rights for community partners, and accountability when scholarship causes avoidable harm. That’s the standard I’m asking for—equity in voice, methods, and responsibility.
Lets keep the gloves off here – feels like we’re getting somewhere – any others like to enter the ring?
Well said Pat, applies beyond cancer advocacy, we’ve experienced the same in our disease area!!
Linda, I love this—thank you.
Next step is a short, anonymous survey capturing advocate experiences (good and bad) with industry partnerships. It’s in academic review now.
If you have ideas on design, methods, outreach, or where to publish (and how this can move the needle on patient-centred care & POR long-term), I’d value them.
Feel free to contact me (you hvae email) and I’ll loop you in when the draft is ready.
Have a lovely NB-Thanksgiving Linda
Many thanks to Jack Romanelli, Managing Editor @ Healthy Debate (and all my former friends & colleagues) for spreading the word – and to @AvisFavro for highlighting the bottom line question – “Imagine if the 375+ cancer groups in Canada had collectively created a framework for transparency and collaboration instead of being cast as rivals. Imagine what more we could have built together.”