Just another way in which I am between a rock and a hard place. I need pharma. Obviously, they have also needed me. Or, at least, someone else with a similar genetic profile and the balls to join first in human trials.
My relationship with pharmaceutical companies has been mutually beneficial. I am alive. And all three drugs which I have been in trial for have gone on to receive FDA approval. Time, energy and money well spent, all the way around.
However, as I’ve said before, (Don’t call me partner) this little romance between pharma and myself has not been one of parity.
Nope. One of us has gotten fabulously wealthy while the other–that would be me–has struggled mightily. Those new tires? They did in fact max out my credit card, a fact I discovered halfway through doing my laundry when my card was declined.
I am still–unbelievably–paying for my own parking each time I fulfill my end of the trial bargain. Ten years and counting.
The NYT’s would like you to know that we all bear the burden of high drug prices. Hear, hear I say. However it is the participants in clinical trials who bear the greatest burden. Yes, it has been our poor fortune to come down with diseases for which conventional therapies are no longer adequate, making us reliant upon experimental therapies. However, not only do we take on exceptional risk when we enter first in human trials, we also assume greater financial burden. We are paying for the privilege of being a guinea pig. Something only a truly desperate person would do.
I am a big fan of medical research. But I also believe that the primary motivation should be to address human suffering. However, as pharmaceutical companies are a for-profit industry, that motivation is always going to be muddied. Because at the end of the day, it’s not just drugs but money that’s being made here. And that, my friends, is fucked up.
life and breath: outliving lung cancer 
I too, am experiencing something similar. I am footing air fare every three weeks (now every six) from SC to Boston, add Uber/Lyft, anything to eat or drink, and I PAY for everything that my medical insurance doesn’t cover, for a Lorlatinib Clinical Trial.
My Social Security only gives me enough to, barely, live on.
I’ve asked for assistance and am told there is none.
My Primary Care physician suggested I start a GoFundMe.
I know of people are starting organizations and charitable events, to raise $$$ for Lung Cancer awareness and that is great, but what about those of, with lung cancer, struggling to survive and make ends meet??
I am with you 100% and something should be done.
Who do/should we reach out to?
Scott, I am sorry that you have travel and lodging as well. There is an organization whose name I can’t think of but when I do—I will add it to this comment. However, in the meantime, we need to keep speaking up and out as so very many people assume that everything in a clinical trial is paid for and generally it is only the drug. It is a huge burden on those of us who are already burdened by our mortality. And given the disparity (the enormous salaries and profits in pharma) it is a bitter bill indeed.
xo Linnea
What a messed up race we are!!!!
I’m more than happy for these clever scientists to earn a decent salary. They worked hard at school and I want the smartest of the smart to be attracted into research.
Billions of pounds of profit each year however is gut wrenchingly DISGUSTING!!!!
Here in the UK we don’t even have access to all the ALK drugs that amazing people like you put your lives on the line for and those that we do often come along with ridiculous caveats..
These companies have us all over a barrel!!!!
Not much consolation Linnea, but I really appreciate beyond words what you have done and what you do ❤️
Thank you Leslie. There is no perfect system but we could do much better.
xo Linnea
I would like to add to your sentiments that the researchers discovering and innovating in the labs are typically in it for the love of announce and desire to help. They are not compensated gloriously if their research pays off for the company. Sales folks tend to do well with commissions and bonuses but intimately it’s the C-suite and stockholders that do the best.
Typo…for the love of SCIENCE
Rachel, I love scientists. Really, truly. I am the child of one, I am named after one (Linneaus), I married one, I spawned one and many of my friends are scientists. Were I not an artist, I would likely be a scientist as well. And I know why scientists do what they do and it’s not for the money. There is nothing wrong with financial incentives but they shouldn’t be so over the top. These salaries and those profit margins; that is criminal.
xo Linnea
I fully agree that the bigwigs should not be reaping the benefits while the folks who need the medications go into debt. I just hope everybody sees the difference between the researcher/inventor and the big pharma C-level/stockholders that profit. Those profits are not cascaded down the corporate food chain and most often, the R&D folks are the ones cut during financially difficult times in the corporate environment. It’s a very unfair system.
P.S. I’ve been following you since 2014 when I googled “lung cancer positive story”. Thank you for being a positive light for those of us “googling” too much. ❤
Linnea you should go viral and op/ed the heck out of this. Really…they can’t give participants parking vouchers? More people need to know about the disparity. Keep up the good fight!
Sherpa