The Test Drug Fairy Tale Continues
Had an appointment on Friday the 23rd, this was supposed to be the big one when we were going to start the test drug. Upon arrival (well after waiting 1 and 1/2 hours) we were told "it should be another 3 weeks until we start the clinical trial for the test drug". Imagine my surprise. This is the same crap we have been hearing since December.
For those of you keeping score it is now the end of March and still no study has been approved by the Internal Review Board at MUSC. This is exactly the same state it has been in for almost 6 months now. We have been told "3 weeks" for the last 6 months as well.
I could literally phone in my Dr's office appointments. God Damn ridiculous.
Well this time Cindy was with me and she damn near blew a gasket.
I thought she was gonna hit somebody.
Unfortunately for my new Doctor (O'Brien) this was his first official visit as our doctor and it about turned into a blood bath. Now he thinks we are kooks. We were literally yelling at the poor understudy Doctor Shirai, who we have had for over a year now. "What do we have to do to get this going?" Do I have to strap a bomb to my chest and infiltrate the next review board meeting? What does it take to get administrators to just rubber stamp this study that is already going on at several hospitals across the country?
So we told them that we wanted to go somewhere else, we would fly to Tampa, to Boston, to Dallas, to friggin China if that is what it takes to get on the drug.
Poor Shirai went out into the hall to talk to the clinical trial coordinator and came back in to tell us that since we last met that Emory in Atlanta and Duke in NC, both had started this study as well. I guess that is two more facilities that have their crap together over MUSC.
Keep in mind that the medical review board had approved this back in November or so and it has been sitting in the in basket of the suits review board ever since. Bureaucracy at its finest.
So we said that Duke would be our place of choice, and if you ever get it started here at MUSC we can just transfer back here.
We have many people in NC we can visit and stay with so that is the natural choice.
So now they said they would call us Monday with the details of who to contact to get in on the Duke study. Well it is now the end of Wednesday and do you think we have received a call regarding this, of course not.
So it is up to us again to play doctor, lawyer, insurance adjustor, pharmacist, and patient.
That is where things stand now, we are just so tired of being dragged along with no information or progress. I can not just sit here for eternity waiting for this study to get approved. Something has to be done.
Let me just tell the cancer to wait and see how well it listens.
Bye for now,
Greg
For those of you keeping score it is now the end of March and still no study has been approved by the Internal Review Board at MUSC. This is exactly the same state it has been in for almost 6 months now. We have been told "3 weeks" for the last 6 months as well.
I could literally phone in my Dr's office appointments. God Damn ridiculous.
Well this time Cindy was with me and she damn near blew a gasket.
I thought she was gonna hit somebody.
Unfortunately for my new Doctor (O'Brien) this was his first official visit as our doctor and it about turned into a blood bath. Now he thinks we are kooks. We were literally yelling at the poor understudy Doctor Shirai, who we have had for over a year now. "What do we have to do to get this going?" Do I have to strap a bomb to my chest and infiltrate the next review board meeting? What does it take to get administrators to just rubber stamp this study that is already going on at several hospitals across the country?
So we told them that we wanted to go somewhere else, we would fly to Tampa, to Boston, to Dallas, to friggin China if that is what it takes to get on the drug.
Poor Shirai went out into the hall to talk to the clinical trial coordinator and came back in to tell us that since we last met that Emory in Atlanta and Duke in NC, both had started this study as well. I guess that is two more facilities that have their crap together over MUSC.
Keep in mind that the medical review board had approved this back in November or so and it has been sitting in the in basket of the suits review board ever since. Bureaucracy at its finest.
So we said that Duke would be our place of choice, and if you ever get it started here at MUSC we can just transfer back here.
We have many people in NC we can visit and stay with so that is the natural choice.
So now they said they would call us Monday with the details of who to contact to get in on the Duke study. Well it is now the end of Wednesday and do you think we have received a call regarding this, of course not.
So it is up to us again to play doctor, lawyer, insurance adjustor, pharmacist, and patient.
That is where things stand now, we are just so tired of being dragged along with no information or progress. I can not just sit here for eternity waiting for this study to get approved. Something has to be done.
Let me just tell the cancer to wait and see how well it listens.
Bye for now,
Greg
posted by Greg at
7:52 PM
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