Ok, let’s get real. I don’t expect to get paid $5000 a month to participate in a clinical trial and I deleted that rash comment from my last post. Fantasy, folks, that’s all. However, any sort of financial assistance in the form of compensation would be welcomed. When I met with the head of the cancer center, I also suggested that greater supportive services would go a long way. Free parking and a comped lunch, but also someone to help me navigate the financial morass while I’m on a drug with known cognitive side effects. Visits to a nutritionist, as just like everyone else on my therapy, my cholesterol is through the roof. How about some free massages—to make my life better/more relaxed? And I mean gratis—not billable to insurance.
In other words, there are ways to make the whole clinical trial experience more welcoming and sustainable. These are relatively new concepts as not so very long ago, most clinical trial participants were a one and done—in the most literal sense.
That was the expectation when I enrolled in my first trial ten years ago. That, best case scenario, my life would be extended for a few months. I am incredibly blessed that I have had the opportunity to go on to subsequent treatments and trials, extending my life far beyond what I ever thought possible. I am sensitive to the fact that my grousing about money is potentially unseemly for those who would give anything to be in my position–alive.
Gratitude is far more palatable and it makes my disease/continuing survival easier for all to digest. However, the problems I face are faced by others as well and as an advocate/activist, I feel it is vitally important to discuss them—in a public forum.
Being alive is a good problem to have. But having to worry all the time about the expense associated with your medical care is not. I now have way more anxiety about my money than my cancer. How crazy is that?
And the thing is, I am not poor. However, with health costs exceeding a third of my income, it’s not doable.
What if (and I don’t feel this is unreasonable) trial sponsors covered all medical costs for participants, just as so many people already assume is true? If that was taken off my plate than I could pay my other bills. My financial situation would still be tight but it would be tenable. And that is all I’m asking for; (I’m talking to the medical establishment now) don’t make this already tough situation–living with a terminal illness–more difficult than it needs to be. Show some appreciation for the very real contribution I and other clinical trial participants make. Without us and our mutations (that’s right, we actually represent a rare commodity, not just an opportunity) these drugs would never make it to market. That would be a real loss, both in terms of lives and dollars.
So let’s keep this conversation going. My experience might be fairly unusual in terms of years spent in trial, personal finances and marital status, but it’s not unique. Clinical trials are the lynch pin when it comes to cancer therapeutics. Things have been done a certain way in large part because few have questioned the status quo. We, as consumers, have greater value than we sometimes realize and it is time we demand a better experience. As a society, let’s stop asking clinical trial participants for more blood, more sweat, more tears and instead find a way to support them as they lead the way. It’s the right thing to do from both a humanitarian and a business perspective—in a word, profitable.
life and breath: outliving lung cancer 
Don’t take back anything you said in your previous post, especially the righteous anger! Well, okay, maybe the $5000 a month part, but not the zeal about making the process more equitable and just plain easier on the participants. And don’t participants go through enough already? After all, they’re called clinical “trials.” If they were easy, they’d be called clinical cakewalks. Participants deserve to have their contributions, and their suffering, recognized and compensated!
Thank you Miss C—and I like the clinical cakewalk analogy.
xo Linnea
I agree with you on everything you said here. How difficult would it be to give free parking? I had never thought about the co-pay that my treatment center charges me, but I agree with you. They are using me as a guinea pig. Honestly, sometimes I think they have their own interests at heart and not mine. I am on a very harsh drug for my 9th cycle. It is the first TKI for Exon 20….it is so harsh on my entire system. I am miserable. I should have been moved off of it, but I know the trial is willing to keep telling me that I can stay on it so that it looks better with the longevity that I have had on the drug. They want to bring it to market….so, at least don’t charge me the co-pay. Not to mention, my hubby and I fly to Houston once a month for my appointments. I have the credit card to prove it!
Thanks for starting the conversation.
Shelly
Shelly, free parking would/should be a piece of cake. I am sorry you are having a tough time—it’s more difficult still to justify the cost and effort when that is the case. I hope your situation turns around (and thanks for joining the conversation. I hate it when I have to talk to myself 😉
xo Linnea
Well said. Also the doctors and hospitals who do these trials and get $ for it should care more about the patient experience. Free parking would be easy for them. How much would a few platters of sandwiches set back Mass General? The whole point of staying alive after cancer is to have quality of life. Financial worry is not quality.
Sent from my iPhone
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Gale, I’m with you. Mass General could definitely buy me lunch. And as grateful as I am to be alive, I would be more grateful still if I could be alive and worry less (let’s take worry off my plate and put a free lunch on it instead 😉
xo Linnea
I’m sorry that you felt the need to delete the $5k portion of your post. I took it as a bit of hyperbole which contributed to illustrating the financial crisis so many of us verge upon.
My boss retired while I was on leave for surgery. I’m currently Stage IV and on disability. I am financially stable thanks to my husband and his income, but if he passed away or our relationship dissolved (which I don’t anticipate, but who anticipates these things), I would be up s**t creek.
Meloni–I am glad you took it that way. I was afraid others would feel I was having a Rosanne Barr crazy moment and I do try to stay credible. Here’s hoping you keep paddling in smoother waters financially. Shit creek is getting crowded 🙂
xo Linnea
Don’t apologize for the comment Linnea. That post was enlightening and motivating. i can see by other comments that i was not the only one that assumed ALL your costs for the trials were covered (scans, tests, nutrition, travel, and of course, parking). There is no valid reason they should not be. No one is signing up for those for the money – but the trials should not contribute to your financial stress.
I’ll add that i am 4.5 yrs into my Stage 3B diagnosis and have narrowly missed clinical trials as i moved from Xalkori, to Zykadia and now to Alectinib all because of people like you who have courageously led the way. Thank you for that!! Both my wife and i found your blog just a month or two into my diagnosis and we have found it incredibly valuable, inspiring and educational in so many ways. You probably have no idea of the huge impact you have made – and continue to make – on the lung cancer community!
When someone gets a terminal diagnosis, they need to see that living – truly living – is still possible. You have done that for us – and for so many others. Please know you have a community at your back.
LOVE! LIVE! (from athens, ga)
Kirk, your comment made my day; thank you. It is interesting to note that even fellow cancer patients assume everything is paid for—there obviously needs to be more discussion regarding this perception. Continue down that path—-hopefully you’ll get to hang out with Alectinib for a good while.
xo Linnea
ps: live and love; two of my favorite words 🙂
Always something new to learn… I love the word cake walk! I am italian no native speaker and anything food related sparks joy.thanks to you both for making me laugh during a sleepless night! Kisses from Spain, Barcelona. Yes, Linnea your legacy is going far… You have international fans!
Good to hear a voice from afar–thank you. And yes, cake walks used to be a real thing.
xo Linnea
Always something new to learn… I love the word cake walk! I am italian no native speaker and anything food related sparks joy.thanks to you both for making me laugh during a sleepless night! Kisses from Spain, Barcelona. Yes, Linnea your legacy is going far… You have international fans!
By the way, this sentence really made me feel accompanied, real and understood “I now have way more anxiety about my money than my cancer”. Being alone I worry about how long can I go living with dignity and cancer if I am not able to provide any longer for myself due to illness work impiding effects. The worry is a struggle to keep optimistism as well as mental balance. Thanks for spelling out the issue.
IMHO, if trial sponsors have to carry the full burden of a patient’s treatment and transportation plus social worker services we’d have fewer drugs in trials. On the other hand, it would be completely fair to ask sponsors to provide financial assistance where it is needed for those who need it. For example, if insurance is denying scans, the drug sponsor should either pay for them or waive them. If even the co-pays of frequent testing have become unaffordable to a patient, maybe that’s the point when the sponsoring company might pitch in and pay for all those trial-related co-pays?
Best hopes,
Craig in PA
Craig, I am certain that is an excuse we’d hear. However, again, I only think it fair that participants in clinical trials be compensated (just as healthy volunteers are) and or have their medical expenses paid for. That, or give us options on future profits from the drugs we are the human guinea pigs for 😉 Think I’d have a pretty penny by now.
xo Linnea
Love it! Keep fighting!
Thanks dear!
xo Linnea