I just had the privilege of sitting on a panel at the first annual COE (Centers of Excellence) summit hosted by the Bonnie J. Addario Lung Cancer Foundation along with four other patients with personal experience as participants in clinical trials (that sentence was a mouthful).
Our audience was primarily members of the medical profession along with some representatives of pharma and other advocacy organizations. Our task was to school them.
Janet Freeman-Daily moderated the panel, and as our session closed she asked me to talk about the number of scans I have undergone (I actually prefer to say ‘endured’). As we had been addressing the general burden of clinical trial participation, I also shared my belief that clinical trial participants should be compensated.
A hand shot up and the question was posed (and I paraphrase to the best of my ability)–had anyone ever described to us the scientific rationale behind all these requirements as well as why compensation was inappropriate as it might lead to inducement?
Possibly a wee bit patronizing and certainly way off the mark.
I grabbed my mic and said (maybe with a little too much force): ‘The only thing inducing me is my imminent demise.”
The very idea that I would join a clinical trial for the money. Wowza. And in the meantime, I read articles in the NYT about how many doctors/researchers fail to disclose what I could only characterize as glorified kickbacks. Talk about inducement.
Inducement of clinical trial participants. That’s an old argument. Kind of a blue law. And, to my way of thinking, absolute and utter bullshit.
How many of you know that healthy ‘volunteers’ get paid for participation in clinical trials? That’s right, induced. Because otherwise, who the fuck would do it.
But those of us with cancer, well, we are expected to enroll in clinical research out of the goodness of our hearts. Sort of a ramped up version of community service.
I’m going to be completely honest here. I enroll in clinical trials for one and one reason only. I’m trying to save my ass. Community service? That’s why I write a blog and spend a good deal of my precious time as an advocate/activist. No doubt it’s an ancillary benefit of participation–this satisfaction that what I am doing may help others–but it is not my primary motivating factor. Nor should I be made to feel that it should be.
I, like you, just want to live. And it pains me that in order to keep on living I must pay such an incredibly high price. In nearly every category.
At the conference I also had the opportunity to discuss my viewpoint per compensation of clinical trial participants one on one with some pharma employees. Good, decent people. One of whom justified the lack of compensation by the fact that although some drugs go to market and are blockbusters, others fail. Lost capital, etc… etc… My response? I look at this particular pharmaceutical company’s returns every year and they are doing just fine. And that bit about my being a stakeholder (and yes, I did say this). Fuck that shit. I wanna be a stockholder.
BTW, follow this link for information (no longer valid) as to how to participate as a healthy volunteer in a PAID clinical trial for lorlatinib. The same drug I am yet in trial for. Unpaid. And the reason it is no longer valid? Lorlatinib has now gained FDA approval and goes by another, sexier name: Lorbrena. I know this because I read it in the newspaper.
Yep. I have been on trial for Lorbrena, formerly known as lorlatinib, since May of 2014. I think that gives me birthing rights and yet I had to go online to learn about the delivery of my baby. This too is something I brought up to my friends from pharma. If I am in a clinical trial for a drug that receives FDA approval, then it is only common courtesy to let me (and all the other participants) know when that drug receives approval. Because, after all, we are partners in this venture.