I go off to Nashville and then just off

With some of my fellow advocates in Nashville

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. 


16 responses to “I go off to Nashville and then just off

  1. You are one hell of a woman! Thank you for your advocacy, activism, for YOU! Just can’t say enough. We appreciate you so much! Keep on doing what it takes to save your ass!
    Love your blog ☮️ ❤️

  2. Sock it to ’em, woman!

  3. Linnea – serious question. Does anyone within one of these Pharmaceutical companies or research hospitals seem to take your position seriously? have you seen any interest in them changing or re-thinking this? is the audience rolling their eyes at the ‘crazy cancer lady” : ) Or do you see them come to the realization that not being compensated in some way is just plain wrong? i have mentioned to you in the past that both my wife and if were shocked that patients did not get some payment for clinical trials – so i am wondering what it will take to get that changed. PS thanks for sharing and thanks to you and the others on the panel (And Bonnie Addario ) for advocating for us. LOVE! LIVE!

    • Kirk, I’m sure there is some eye-rolling but I also think there is some sweating around the collar. They have to know that this situation is unfair and also that getting people to enroll (an ongoing challenge) might not be so difficult if we were compensated. As it is, because trials are expensive to participate in, there are prejudicial. That means the science is not as rigorous as it could be as it does not represent a real (economically diverse) population. And yes, I’ve been shouting in the wind but I’ve been doing it consistently and for a long time now. And whether they like it or not I have street cred (lotta miles on this carriage) and an audience. It took my being noncompliant to get the protocol on my trial changed (scan schedule)—sometimes resistance is the only way.

      xo LInnea

  4. Hell YES. To it ALL.

  5. Nice job! Thanks for talking for all of us.

  6. My blood is boiling. That you are there to school highly paid professionals who benefit from your clinical trial participation is tough. Tougher is to have to listen to a smarmy comment from one whose life is not threatened by cancer enrages me. Duck his/her head in a bucket of cold water. Nancy

    Sent from my iPad


  7. Not trying in any way to trivialize your situation since there is nothing trivial about where you are. But a sports analogy is called for here. The NCAA, in particular, college basketball. I’ve covered the men’s tournament for 20 years (though was recently outcast due to cutbacks) and heard the very same argument every year–should the players be paid? After all, the NCAA has a $3 billion contract with CBS, plus the amount of ticket revenue is absurd. All to watch amateur players–students–put on a show. And some of them can’t even afford meal on the road. They should get compensation, as should you. The amount of $$ in medicine is equally absurd, and then you get home and have to deal with bedbugs. Crazy, right?

  8. I’ve never been the cheerleader type, but I’ll cheer for you all the way, Linnea. This is just wrong.

  9. Thank you for this wonderful post! I’m glad you spoke your mind on the panel. I am not exactly in agreement with the idea that clinical trial participants should be compensated directly for participation. I’m a physician and my husband has been in the first line Brigatinib v. Crizotinib trial, on Brigatinib for two years. I think any medical procedure or trial that involves unknown or significant risk should not be compensated. So I’m against compensation for organ donation, compensation for surrogacy, and compensation for clinical trials. I am however, very much in favor of REIMBURSEMENT or prepayment for the costs involved in participating in a clinical trial. Costs that should be reimbursed are: lost wages and added co-pays for extra visits and scans, TRAVEL, parking, and meals due to the longer length of trial visits. I also would like to see a guarantee that the trial participant can stay on a still-beneficial trial medicine cost-free when the trial is over or they no longer qualify. What upsets me the most is the lie that patients are somehow partners in the clinical trial process. Even holding this conference promotes that lie, as the dismissive responses to your comments show. My husband is by no means a partner in his clinical trial. He has signed a contract to get free meds and some scans by following the fixed protocol of the trial. There is no outward evidence the drug company holds him in any esteem at all. BTW, altruism was a main motivator for my husband to join his trial. He thought for sure he was donesky, and he wanted his death to be meaningful by helping others. Whether it’s desperation to live or desperation to be altruistic, this anguish can be exploited by drug companies.

    • Ellee, my version of compensation is what you call reimbursement. I’m not looking to make money but I would like to have the financial barriers/worry of participation removed. Perhaps my message would be better received if I changed the word from compensation to reimbursement. And I truly appreciate you, as both a physician and a caregiver, weighing in. And as for your husband’s altruism, I am most impressed.

      xo Linnea

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