I had to be in Boston bright and early yesterday morning for an echocardiogram. The technician noted that this was my 36th echo, and that she thought that was probably a record.
Honey, don’t get me started. I’m in the triple digits for chest CT scans. Forty some brain MRI’s and over sixty abdominal CT scans.
This is why I am once again noncompliant as I partake in my fourth first in human trial: after the first two CT’s, I have refused additional abdominal scans.
Trials are a necessary way of life for many of us with advanced cancer. But never forget that this is a codependent relationship; trials also require people like me. Emphasis on person.
I am, first and foremost, a human being. One who shall continue fighting not only for my life, but for my personal rights. And for yours as well.
Medical research cannot move forward without the consented participation of so called ‘volunteers’ such as myself. As I am in this for the long haul, I will not agree to onerous demands that put my already compromised health at greater risk.
I urge you to do the same. Question the necessity of tests that are not clinically indicated. Remind sponsors that you are more than your tissue. Stand up for yourself in a trial just as you would if you were a patient rather than a participant. Challenge the medical research establishment to make good on the aspirational ‘patients as partners.’
It is up to us to initiate change because we have the most at stake (literal skin in the game). We cannot afford to be complacent. And if you think about it, there is nothing to fear but cancer itself. Seriously. Question the unequal power dynamic and the status quo.
To do so does not indicate that you are anti research. In fact, I would posit that it means quite the opposite. You wish to be in this relationship but you also desire that it be healthy and productive for all involved. Demand respect. And always remember, assent is not your only option. It’s ok to say no, and better yet, to suggest an alternative.
Less passive participation is not only good for the individual, it will ultimately benefit research as a whole. So don’t hesitate to speak up. Speak out. Advocate for yourself but also for a truer alliance. An actual partnership.
Let’s move this needle forward together.