Who can– and cannot – patient groups accept funding from, and on what terms, without endangering their values and the value of their work?
Sharon Batt’s book, Health Advocacy Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement (2017), explores this debate through the lens of breast cancer patients’ groups in Canada.
The author was actively involved in the movement before starting to write the book, and then proceeded to conduct numerous interviews with protagonists over the course of several years.
While Batt openly favours one side in the debate, her dual insider-outsider status and meticulous research and analysis – combined with a willingness to give a voice to both sides in the argument – makes her book a must-read for everyone interested in the challenges of maintaining non-profits’ independence in the face of a funding landscape in which donors increasingly seek to generate ‘return on investment.’
Patient interests versus industry interests
Like other NGOs, patient groups come in a variety of shapes and sizes.
Many groups focus primarily on providing advice and support to people suffering from a particular disease (think local coffee meetups bringing together women with breast cancer for mutual support). But most groups at some point also find themselves drawn into advocating for patient interests, and some conduct policy research.
A recent systematic review found that pharmaceutical industry funding of patient groups is common, that transparency of such financial relationships tends to be weak, and that industry funded groups tend to have positions favourable to the sponsor.
Within the field of public health, what is – and what is not – in patients’ interest is highly contested. Patients want access to high quality medical care, so patient groups often push governments to purchase newly developed drugs from pharmaceutical companies and provide them through public health systems. However, research shows that many expensive new cancer drugs coming onto the market have severe side effects, but provide no benefit to patients.
Thus, the interests of pharma companies (to maximise profits from the sale of new drugs) and those of patients (access to high quality care) are not always aligned. At the same time, even running coffee meetups requires money from somewhere.
The funding trap
Sharon Batt’s book provides an insider’s view of the often heated and bitter debates within and between Canadian breast cancer groups over the past two decades, against a backdrop of declining government funding for NGOs.
Patient groups soon discovered that the pharma industry was often the only player left in town who was willing to fund their operations.
Around the same time, private sector philanthropy worldwide began shifting its approach from funding ‘good causes’ to supporting NGOs whose activities generated ‘impact’ favourable to their corporate interests.
As Batt sees it, ‘the federal government reversed long-standing policies to support community-based advocacy, and in parallel, the pharmaceutical industry actively undertook a process of co-optation’ of patient groups.
As a result, ‘groups that defined their role on behalf of patients as independent watchdogs vis-a-vis the pharmaceutical industry saw their power and numbers dwindle; the dominant advocacy voices for patients were pharma-funded.’
What makes the book stand out from the rest of the vast literature on these dynamics is the wealth of personal vignettes and in-depth case studies.
For example, take this quote from an NGO worker:
“If I have to stand up in front of a classroom of nurses and tell them that I’m here by virtue of [drug company] AstraZeneca, I’m going to throw up. I’m just not going to do it. So if you want to take the money, take it, but AstraZeneca or anybody else is not going to get their logo on my stuff.”
She ended up securing funding for her project from a commercial bank instead, noting that this funding source too was not unproblematic:
“I think I don’t want to know where [the bank] has its money invested… But the difference between that and pharma funding was [that pharma companies] had an immediate agenda.”
Losing their inner compass
Some NGOs refused pharma funding outright. Others decided to take industry money, but attempted to draw clear red lines to avoid being co-opted by their new funders. Yet others, Batt contends, completely lost their inner compass.
She describes the case of one group funded by a drug company’s foundation that effectively ended up becoming a conduit for stealth direct-to-consumer advertising for particular drugs. In addition, that group’s advocacy focused on ‘having new drugs approved… as quickly as possible – as opposed to focusing on drug safety, efficacy, [or] price.’
Batt cites a report that the group published, ranking Canadian provinces on how fast they gave patients access to new (and therefore very expensive) breast cancer drugs. The ensuing media coverage generated public pressure for faster provision.
Batt sees this approach to advocacy as highly problematic, and not necessarily in patients’ best interest. ‘The type of rich ethical debate about surrogate endpoints… and rising drug prices… is entirely missing; instead, the report reinforces the discourse that equates longer life with better access to new drugs.’
The slow process of “mission creep”
The book chronicles a slow process of ‘mission creep’ that led to the gradual erosion of many groups’ autonomy and integrity along three dimensions:
1. Discussions between patients with diverse perspectives gave way to homogenous discourses reflecting industry framings of healthcare issues.
2. The entire advocacy landscape changed. NGOs rejecting pharma money disappeared, or were marginalised due to lack of resources, and internal critics of industry money were silenced, removed or left the movement.
3. Groups lost their agency as ‘leaders surrendered decision-making control within their own organisations… [and] groups began sponsoring projects with hidden policy backstories far removed from their personal experiences.’
The book concludes that:
“[T]he breast cancer movement in Canada has failed in the [original] idealistic goal… of keeping medical science honest. Rather than providing a check on the self-interest that tempts actors in the system to stray from medicine’s main goal – alleviating suffering – patient organisations have themselves been led astray."
"Instead of critiquing marketing strategies that distort the truth about a drug’s benefits or risk, high prices, unpublished results of clinical trials, or strategies that offer drugs as the sole antidote to illness, PHANGOs – pharma-funded NGOs – protest government regulation of drugs, heartless bureaucrats, and perceived barriers to addressing novel treatments of uncertain value… [T]he research evidence doesn’t support the claims on which they are based.”
Beyond good and evil
Batt’s overarching argument has an explicit left-of-centre bias.
In her view, government funding of activism is a legitimate means of redressing power and resource differences between different social groups, which is ‘in the long run necessary to sustain democracy.’ In contrast, corporate funding promotes advocacy positions that ‘fit within a corporate values frame,’ she writes. Pharma-funded groups simply ‘don’t challenge the injustices of capitalism.’
Conservatives and libertarians are bound to disagree (as are those on the radical left). After all, government bodies too use non-profit funding to promote bureaucratic vested interests and the ideologies and policies favoured by those who hold political power at any given time. Seen from that perspective, removing corporate money from the NGO funding mix would allow the government and a handful of unaccountable mega-foundations alone to decide which advocacy groups’ discourses get amplified with money – arguably not a recipe for healthy pluralistic debate.
To Sharon Batt’s credit, she never falls into the partisan trap of framing the issue as a moralistic struggle of good versus evil.
While she stakes out a strong position, she treats the topic with the nuance it deserves, chronicling in detail how decent people and committed organisations over the course of many years struggle to support and represent breast cancer patients in the face of financial constraints and funder attempts at co-optation, drawing on a staggering amount of ethnographic material along the way.
Academics, funders, policy researchers and campaigners of all political stripes will find a lot to like, learn and think about in this meticulously researched and well-written book.
Note: This book review was originally published under a Creative Commons license by On Think Tanks in 2020. The first paragraph has been modified.