The financial toxicity that is part of staying alive

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.

21 responses to “The financial toxicity that is part of staying alive

  1. Wow,

    I love what you wrote and every word of it is the truth. This behavior goes so deep and has been going on so long. Back in the 1960’s parents of pediatric cancer patients had to donate $$ to the cancer hospitals in order to get their children admitted. These kids died of poisoning probably before they would have died from cancer.
    As you know, you are a pioneer on many, many fronts. Thank you for that.
    I’m behind you in any way you may need or want.
    I’m cancer free, but have had both Lung and Colon cancer as an adult.
    My brother died at age 5 in 1963 of cancer.

    Cheryl

    • Cheryl, I had no idea about what went on with pediatric cancer in my youth (we are all always learning) and I am so sorry about your brother and unthinkable that you should get cancer as well—albeit with a different outcome. Thank you.

      xo Linnea

  2. Thank you for your brave honesty and your service. You should be recompensed for the service you’re giving.

  3. Martha Dervish

    What you have endured during the trials is so wrong. I thought every expense was covered for people in trials. My son had NSC lung cancer too and died last year at age 57. He was waiting to get in a trial when his tumors got in his spine causing sudden paralysis so he was no longer eligible for the trial . He had the EGFR mutation and he lived a little over two and a half years on chemo, radiation and .Tarseva. He made many friends in the lung cancer world and the ones with your marker (Alk) far outlived the others. I am glad you are still with us and wish the greed factor had not made things so much more difficult for you than it should be. I am for single payer health care and want reform of the pharmaceutical industry. You are a prime example of why medical care needs to change. It won’t happen as long as that clown is in the White House but at some point it will change for the better. I have to believe that.
    I hope the best for you and admire all you are doing to inform others
    about all aspects of cancer.

    • Martha, I am so sorry about your son. It must be difficult to hear me complaining about the cost of participating in a trial when your son was waiting to get into one. It is a complicated situation–one that I hope to help make better.

      xo Linnea

      • Martha Dervish

        It doesn’t make me feel bad to read whar you say at all. I am glad to learn all about your experiences and you are so helpful to share this with us. I think now it may be better that Marc didn’t make it to a trial. He played eighteen holes of golf six weeks before he died and lead a very active life with his family the whole time while pushing through the pain.

  4. Linnea, I agree with everything you said. I did not know about the clinical trial inequities!! I am
    shocked and saddened.
    I will always be so grateful for your passionate voice for those of us suffering from this awful disease that many others feel we brought upon ourselves by smoking. I will admit that until I was diagnosed in 2010 with NSCLC, I probably felt the same way. 🙁
    I am writing this in a hotel near MDAnderson Hospital in Houston. I had my six month scans today to determine whether the ground glass opacities In both lungs have grown enough to biopsy and treat. This is a recurrence of my original cancer.
    I will most likely be participating in clinical trials at some point. That you again for the information.

    • Mary, it is a well kept misunderstanding (about clinical trials). By the time you get in one you don’t tend to worry about things like money but I’ve but hanging out here long enough that it’s become a real issue. And man, I hate ground glass opacities but then again, a biopsy can offer some useful information. Hang in there.

      xo Linnea

  5. Kristen Aliotti

    I had no idea that you were required to go through “extra” scans and procedures, paying co-pays, etc., for things that were simply required for the clinical trial. No idea. I also thought all expenses were basically paid. Speaking of parking, OMG, every medical center I know in older more dense areas is surrounded by looming parking garages! Horrible. Not even the atmosphere we need to surround and welcome patients. I don’t know the half of what you have endured, but I know that what I have read over the last several years, you are a heroine to the max. Strong and smart, and to think you have kept so many of us informed as you have. My friend is going through some post-radiation complications in the gut; one of the drugs she was prescribed was $800 a month. It was not covered by her A+ insurance. (She has a very small pension, and social security.) In fact, in order to get a tiny bit of coverage (brought it down to $600?) she had to consult an insurance broker and switch to a different plan! Who wants to have to worry about paperwork and “choices” in the middle of a medical crisis. Yes, single payer, all the way. I hope that you get good news on several of your outstanding and stressful issues, and I am glad you are stable right now.

    • Kristen, it is one size fits all when it comes to protocol—not per patient like actual clinical care. In my case, I have had no abdominal mets and yet I’ve had an astounding 44 CT scans of my abdomen. I became noncompliant (refusing to get more) almost three years ago. I’m sorry your friend is going through a stressful time—hopefully my own will be resolved shortly.

      xo Linnea

  6. Linnea ,I live in the U.K. and our health service ,although not perfect by any means is nevertheless free to all ,and ever sine I joined the inspire family and read many many posts from members basing their treatments on what insurance they can afford ,my goodness as if staying alive did not take up all thoughts and energy , the enemy is not only the cancer but the systems .
    And yes Linnea you deserve at the very least ,to live comfortably for what you have achieved against the fight on lung cancer ,ie ,all expenses paid. Not1cent outof pocket ,and paid money for every attendance xxxxxx best wishes Sandra

    • Sandra, free to all is a good first step toward perfection. I don’t use the word deserve very often but everyone deserves equal care and that’s not how our system is set up now.

      xo Linnea

  7. Excellent, Linnea. Reposting…

  8. I too thought all medical costs were covered when you participated in a clinical trial. I think it’s wrong you have to pay anything. I can’t believe you have to pay for parking too! What was the outcome of your meeting at MGH? Anything???

    • They were sympathetic (and surprised by some of what I shared–even they weren’t fully aware). However, I was on the Patient Family Advisory Council for the Cancer Center for four years. I brought up the parking thing ALL THE TIME and nothing has been done yet. So…..

      xo Linnea

  9. Christine Weissenberger

    I am with you all the way and even if I am in Canada and our medicare is allright I find it totally relevant and I have shared your post on my FB page.

  10. Unfortunately, I am new to this, but I see that participants deserve a stipend. Certainly, the money is there.

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