Why I took pharma money as a patient advocate. And why we should take more.


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11 comments

  1. Linda Wilhelm

    Thank you Healthy Debate and Pat Kelly for providing some balance on this issue. It is insulting to me, a long time patient advocate and someone who has been living with severe Rheumatoid Arthritis for 35 years that anyone would assume I would want medicines available to patients that were not based on the best possible evidence available to improve and save lives

  2. Stephen Roedde

    Absolutely dead wrong. Big pharma knows exactly what it is doing. The patient groups it funds end up “advocating” for Medicare funding of outrageously priced drugs, licencing and use of incompletely studied drugs and tests…
    Anyone who is not compromised would be able to ask the simple question “why would a pharmaceutical company fund us”? The ONLY answer is “to sell more drugs, and make more money”. However, I get it. Like the organizers of sports and art events funded by Big Tobacco, the doctors too cheap to buy their own lunches or pay for their own education… she rationalizes her (in my view), unethical choice. Like them, she says “I am not compromised”. I heard that from my colleagues for decades… the evidence clearly showed they were. So is Pat Kelly.
    Further, having taught evidence based medicine for much of my career, I have been around long enough to see the world as it is, not how I would like it to be.

    • Pat Kelly

      Good point Stephen.

      I agree that its wise to base decision-making on evidence rather than fearmongering, vague claims and ranting.

    • Chris Bonnett

      Patients do not enjoy a privileged position in our health system. Their needs and preferences are rarely and inadequately considered or accommodated at the institutional or governance level. The long term and inexplicable persistence of hallway medicine, disaggregated and selective wait times monitoring and the failure to fund certain worthy cancer drugs in Ontario simply because they come in pill form would be examples of where the patient’s needs and best interests go to the back of the funding line.

      I’ve also been around long enough to see the world as it is and I struggle to understand why our system is so often so insensitive to patient needs…despite the rhetoric of patient-centricity. If we really don’t want drug companies to fund patient groups, or help patients navigate this byzantine system, or detail physicians on their drugs, then our public system has to step up and solve these problems at the source. It hasn’t. Patients ought to have meaningful, routine input in policy, programs and practices. To often still, they don’t. Many would agree pharma funding is imperfect but exactly how would patient voices have been heard and created change without it?

  3. Jason Grier

    Thank you, Pat, for giving people a window into the other side of this story. We should never forget the fact that patient advocates come to their advocacy honestly, typically because they themselves or a family member is affected by a disease condition. In the context of their lives, that health issue must represent a pretty “big deal”, so much so that they have volunteered to take actions that will result in some kind of improvement. The suggestion that a patient advocate would choose to prioritize the interests of an industry partner over their own health (or the health of a loved one) must seem puzzling, or even hurtful, to those who volunteer their energy and time in this way. That is not to say that industry funding doesn’t present a unique set of challenges and risks to an organization, it just means that we need to consider those risks in a more balanced manner. Patient organizations, health care providers, and industry all understand the potential for financial relationships to complicate appropriate decision-making even by the most well-intentioned, which is why together they have established so many rules, conditions, and disclosures to remove as much doubt as possible.

    Those of us working in health care and in the health policy arena will have seen first-hand the incredible contributions that patient advocates have made in terms of raising awareness, delivering education, advancing research, fundraising, and advocating for themselves. It seems strange to me that we could question the sincerity of, for example, a lung cancer patient because a company happened to provide an unrestricted grant for research, sponsored a reception at an annual symposium, or provided support to train and build capacity for self-advocacy?

  4. Phil

    I am reminded of a thought-provoking documentary called Pink Ribbon, Inc that talked about the dark side of corporate sponsorship of breast cancer awareness campaigns.

  5. PJ Mierau

    As Managing Director for Canada’s only national, member-owned advocacy co-op I would like to contribute a dissenting opinion.

    While we agree patient groups and their priorities have too long bounced between financial foster parents in industry and government, my fellow directors and I founded Patient Critical Co-op on a different belief.

    For a strong patient voice to develop and become a responsible and truly representative stakeholder in Canadian Healthcare, we need to cultivate & guide our own voice, or forever be beholden to other interests and priorities.

    For that reason, Patient Crirical Co-op’s By-Laws forbid us from taking any money from any outside organization.

    PatientCritical.com

    • Phil

      Great work. I am sure that was a difficult decision. But I appreciate that autonomy is priceless.

  6. Adriane Fugh-Berman MD

    Corporate funding of health advocacy groups can buy agreement, acquiescence, silence, or mitigation of criticism – but it
    always buys something. Anyone tempted to believe this corporate cheerleading needs to read Sharon Batt’s eloquent book Health Advocacy Inc., which shows all that is wrong with health advocacy groups taking money from pharmaceutical companies. Groups are funded by industry only as long as they spout – or don’t oppose – industry messaging. Industry dollars support industry goals. Support the groups that don’t take pharma funding! Here’s a list:
    http://pharmedout.org/pharma-free-groups.html

  7. Mike Fraumeni

    Thanks Pat for writing from your perspective on this, excellent read and very valuable. I would just add that when it relates to evidence, some caution is required because not all evidence is the same, even systematic reviews and meta-analyses, the basis of how many clinical practice guidelines are performed. This piece from 2016 may be of interest in this respect:

    “The man who made scientists question themselves has just exposed huge flaws in evidence used to give drug prescriptions”
    https://qz.com/784615/the-man-who-made-scientists-question-themselves-has-just-exposed-huge-flaws-in-evidence-used-to-give-drug-prescriptions/

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