Dropping FCal

[Pilgrim]

FCAL research at our children's hospital has been defunded and dropped.
They will now be outsourcing the test. If I understood correctly they are going through our drug manufacturer to order the test.
I can't help but think this will limit our access, put H in the OR more often for scopes, and close the ethical distance between test and med producer. I am really upset.

So I am writing to the hospital. If anyone wants to add anything here, I am collecting fuel for the letter.

 

[my little penguin]

Our F cal has never been at the hospital and always an outside lab .
More recently not covered after a cross dx is made
But Gi still uses it and we still pay for it
Not really an issue except for the not paying part.
Scopes are still needed regardless of fcal on a regular basis since fcal is only one small part

 

[crohnsinct]

you can read my fc thread but in a nutshell here in the states insurance lives the test for screening who should be scoped for a dx but for monitoring a patient already dx'd not so much. Most insurance companies consider it still experimental and not clinically significant.

We test at an outside lab also. We pay for it. Test costs $118. It would cost insurance $15...so stupid! They don't cover levels or antibody testing either. So they would rather treat based on sumptoms and pay the costly scope or admit charges.

Maybe the fact that they are processing through drug company might mean drug company will subsidize cost of test? They already subsidize a huge part of the cost of meds....

 

[Pilgrim]

Yes, I think there is probably a subsidy. We didn't discuss a fee.
FC has been a life saver for us. Because we had "in house" easy access to FC we brought a sample for every visit. Last year she was declared symptomatically "in remission" and then the phone rang before the week was up to say her fcal was over 1800. Her labs were super. Everything looked fine on the surface. That started us on Humira.

It happened again this summer. That led to upping her dose schedule.

She has only been scoped once for diagnosis, almost 2 years ago now. So, I can see we were fortunate to have easy and regular access. But also I can see that our GI has been fortunate to not have to bring kids into OR as regularly. I think that will change now. I guess there is also the greater chance that if she "looks" fine there will be no need to scope, or order and pay for fcal.

Thanks for the perspectives. I'll look for your fc thread, CIC. I know I read it at some point but today it's all a blur.