Cancer is big business. Yep, I said it. What is a devastation for us, as individuals, is an opportunity for others. I have sat in on meetings where that word opportunity was bandied about as if I, an opportunity myself, was not in the same room. Thirteen years in, I am a cancer cash cow. Milked and milked some more. Of course I am grateful to be alive. But I am also exhausted and increasingly depleted.
And I’m angry. Angry that I have now fronted (been in the first few cohorts) of three phase I clinical trials. That because of my (and other’s) contributions, many lives have been extended. And money has been made, lots and lots of money.
Several weeks ago I posted this on Facebook:
A rant and then a rave. I just received a notice from Partners health care threatening to send my account to a collection agency. If they do, this will be the third time. Included in this bill are my copays for the brain MRI’s that I don’t effing need but which are required for the clinical trial. The same brain MRI’s that are responsible for the fact that I now have Gadolinium deposits from the injectable contrast in my brain, a rare phenomena referred to as a brain stain. And if this wasn’t frustrating enough, I also received a notice from Cigna that my echocardiogram will not be covered at all, because it is not medically necessary. Again, mandated by the trial. But, in this case, clinically required as there is the potential for cardiology complications from the experimental therapy.
And while sitting in a restaurant at the airport on the way home from the HOPE summit I watched numerous people come up to the soldiers at the table next to me to thank them for their service to our country.
I too am a soldier in an entirely different sort of war. I don’t get to board the airplane first—I can’t even get my parking paid for at the hospital. Instead I am a cog in the wheel–a cog that pays for the very service it provides. In more ways than one (brain stain). Wrap your head around that one.
#MoreRights&SupportiveServicesForClincialTrialParticipants
The exceedingly large number of comments on this post told me it had touched a nerve. The next day I forwarded it to the head of the Yawkey Cancer Center, requesting a meeting to discuss the financial toxicity associated with clinical trial participation. The director responded immediately, and invited representatives from the financial and clinical research departments to join us.
I brought along a sheet with my out of pocket expenses for the previous year, as well as my monthly budget. I addressed the misperception that clinical trial participants get all costs covered. Drug is free, some procedures and labs, everything else is billed to insurance. And clinical trials require more frequent visits and scanning, adding to overhead. Premiums and coverage are variable, but one can safely assume that a clinical trial participant will max out their deductible quickly. And that other out of pocket costs (parking, travel, meals, hotel) will almost assuredly not be covered at all.
I also shared my frustration at seeing notices seeking healthy volunteers for clinical trials at MGH. These volunteers are invariably offered compensation, whereas people with cancer are not compensated for their participation in trials. The long standing rationale is that to do so would be inducement. Which, of course, is total bullshit. The only thing inducing those of us with terminal cancer is our imminent demise. And any suggestion that the FDA mandates that cancer patients not be compensated for clinical trial participation is false.
The real truth is this. Healthy volunteers are offered compensation because no one would volunteer otherwise. And ‘volunteers’ in clinical trials for cancer are not offered compensation because (you choose) A. we are desperate and will do anything, B. it’s always been done this way C. why pay for what you can get for free.
However, it doesn’t have to be this way. Nope. At the tail end of the second decade in the 21st century, it’s high time we adopt a new paradigm. One in which clinical trial participants are paid for their important contribution to medical research. Not only is it the right thing to do from a compassionate and ethical perspective, if the financial barriers to clinical trial participation are mitigated/removed, ‘volunteers’ (fucking hate that word) would no longer represent such an elite portion of the patient population, resulting in both greater equity and better science. And greater accrual, a continual challenge when enrolling patients into trials.
If I were to be compensated or heck, even paid a salary for my participation, than I might just be able to make ends meet. Imagine if I’d received a stipend for each of the 100 months I have now spent in clinical trials for drugs that command well upwards of $10,000 a month once they’ve gotten FDA approval. I might be able to pay my bills and also to live more comfortably. As it is (and yes, I will keep bringing this up until the day it actually happens), not even my parking is comped.
Taken from a current listing for clinical trials at MGH using healthy volunteers. Note the parking compensation.
life and breath: outliving lung cancer 