In the past, I participated in another event supported by this same Big Pharma company. Mostly because of their ties to a nonprofit for arthritis that is very close to my heart.
However, at the end of that last conference, I gave the organizers some feedback: you need to pay your patient participants as a sign that you appreciate their time and expertise. I also said I would bow out of future events because of the expectations on patient participants and the lack of compensation.
After all, this company makes BILLIONS (yup, with a "B") off of patients. The patients who participated in this event gave them feedback that would be invaluable. Those patients were also asked to sign media releases and the like.
So, when a new conference for patient bloggers was announced, I was not surprised when I was not asked to attend. Plus, this new event was not completed with the participation of any non-profit, so there was little chance I would sign away my likeness and rights to help the bottom line of a major corporation that wasn't willing to respect and value patient input enough to actually pay them a consulting fee.
So when a fellow patient advocate who is attending this event tweeted "we do this because of love, not for money" today, I HAD TO LAUGH OUT LOUD.
Let me be clear. I frequently travel, email, make calls, complete interviews, and much more without any compensation whatsoever for the betterment of my fellow patients and our community. I advocate on my own time, and on my own dime BECAUSE THESE ISSUES ARE IMPORTANT TO ME. And, because I believe it is my responsibility as a citizen to do all I can for the betterment of my community. I don't do any of these things for money or for recognition or appreciation. I do them simply because I believe I have a responsibility to use my skills for the betterment of my fellow patients.
However. When a big Pharma company with billions in profits wants me to sign a release of my likeness and opinions...and they don't want to compensate me for my time or expertise... Yeah, my answer is going to be "no." Not because I feel I "deserve" to be paid. Not because I think my opinions are so great. But, because it is critical that for-profit companies recognize the value of patients. Because it is not simply enough for a company to say "we involve patients." But, because patients need to be EQUAL stakeholders in the medical process. Because we, as a community, need to be treated as though our opinions and contributions matter as much as the "professionals." Because tokenism isn't enough for me any more. Because, damnit, I do spend many hours working for free, and that means that someone has to pay for all that time; and it isn't going to be the non-profits.
Also, I was a history major and I am really distrusting when a billion-dollar company tells me I shouldn't make money when I work for them.