Wednesday, January 7, 2015

A beautiful lady, with eloquent, though heartbreaking words re: clinical trials....

This lovely lady sums up so much I feel about clinical trials more eloquently than I ever will!  Please look and listen:

  Lori Murdock, Stage IV melanoma, Clinical Trial survivor

How sadly recognizable her recounting of her oncologist's response to, "Okay, where do we go from here?  I've heard about clinical trials.  There must be some available.  And he said, 'Well, I could have a look'."  At which point it became abundantly clear that the only person she had in her corner was her!!  Granted, ipi (Yervoy) was not FDA approved when I first needed treatment, but the ONLY human who explored clinical trials, beat the bushes, called every oncologist this side of Texas and in Germany to boot, was Bentie. Neither of my local oncologists did.  Had I not had him fighting for me, I really don't know that I could have been as cool as this lady.  I don't know that I could have done the research and kept beating against all the closed doors myself.

Dacarbazine (DTIC).  Hmmm...  Don't forget what Weber said about Dacarbazine:  "...when talking about some of these trial options with Dr. Weber, he acknowledged that had ipi or anti-PD1 had been discovered first....Dacarbazine would never have attained FDA approval...yet, we continue to use it.  Incredible."

And, what the hell???  What sort of (un)ethical behavior did her onc feel he was free to demonstrate when he sent her a letter saying that if he was to refer her to another trial, then she "needed to give them some reassurance that [she] would accept whatever drug [she] was allocated to." Patients agree to participate in a trial or not.  Patients have the right to decline trial participation at any time.  What reputable doctor would twist a patient's arm, holding additional referrals hostage, in order to push a patient to REPEAT a drug they have already taken and not only failed to have their tumors respond to, but became ill in the process, while facing an ever looming death sentence from their disease?  Too many, I'm afraid.  And, if you expect me to believe that they are not subsidized by Big Pharma???? That is never gonna happen!  Don't get me wrong.  There are wonderful docs out there, fighting for their patients...Big Pharma be damned!  Unfortunately, there are many who are not.

"I feel that it is unethical to present an arm to a patient, which everybody knows isn't going to be of help."  "Therefore, if you've had previous phases of a clinical trial that has indicated a good response and you put that up against 'something' that you know isn't going to work, there is an immediate conflict of interest.  An immediate imbalance becomes unethical."   

"I want my voice to be heard.  I want clinical trial designers, drug companies, I want everybody to know - how hard it is to know there are drugs out there and you can't get them.  I'd like them to try and explain it to my children, cause I find it very difficult."

Dear Lori,
I don't know if it helps...but I hear your words.  I feel your pain.  I continue to fight for myself and you and others ~ for the right to balanced, reasonable, transparent trial options.  Perhaps, a few more will hear your words and be moved by your indomitable spirit, as I have been, through my posting your video here.  I wish you love and hope. - c

1 comment:

  1. It is so bizarre that this is actually the way these trials are organized. I find it hard to believe that medical professionals agree to this situation. And yet, this is the normal way of things in clinical trials. It is beyond unethical.