Yesterday I spent 5 hours on arrangements. And barely got started.
- Logistics of the trip. How to handle child care while I'm away and after my immune system crashes, probably a week or two after treatment. When my partner will and won't be there. When, and how long, we're going to need help from my mother and others.
- Due diligence with the NCI nurse. Who pays for the trial? Any vested interests of the doctor in Genentech (maker of Rituxan)? What's the drug company's role? How long will the study continue? What happens if the trial leader dies or moves on? What happens if I leave the country for a year or more? Etc. etc.
- Getting the UM medical records system to release my records to the NCI
- And on and on and on.
Cracks between the systems. As I said in my last post, getting into this trial puts me at the intersection of three huge, complex organizations: the UM hospital, the National Cancer Institute, and the insurance company.
Tests and some treatment happens at the NCI; that's all fine, I'm in their system and I expect it will work OK.No matter what, I'll get 5 days of cladribine infusions. The first 2 at the NCI, then I come home. The next 3, here at UM. The first infusion is scheduled for a Wednesday, which means the last one has to happen on a Sunday.
But the UM infusion center isn't open on Sunday. Does that matter? Could I do it Monday instead? Answer: yes, it matters for the clinical trial, because the trial needs the treatment conditions to be as close to identical as possible. Homework: communicate with Dr. B's nurse to see whether there's some way to get an infusion here on Sunday; if not, reschedule the treatments. Maybe stay at the NCI for all 5 infusions, but then we're talking 8 days instead of 5 at the NCI, which has a big effect on my family, since my partner wants to be near me for all 5 treatments.
Once I'm back here, there'll be more infusions no matter what. The NCI supplies the drugs, but UM is supposed to administer them. How do they get here? Who transports and delivers them? Most important for me: who pays for the infusion services, which might cost up to $1500-2000 a pop? If this isn't set up correctly it won't be covered by insurance and I'll be stuck with the bill.
I'll have many, many blood tests — some done here in our lab, some sending blood to Maryland like I did the other day. Who draws the blood? Who pays? How far off the map will the system let me go? How much irregularity and extra time will my doctor here tolerate?
This is at least a half-time job right now.
1 comment:
My name is Stephanie Dabrowski, and I am a 44yr old woman diagnosed with HCL in Aug 2010 for first time. I am in the NIH clinical trial and have just one week of Rituxan left. I have also befriended a 51yr old guy who is also in the trial in the one time relapse arm. You may want to reach out to him. He has one week left of Rituxan also, we are on the same treatment schedule just different arms. My email is samkateelisa@yahoo.com
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