Tuesday, February 3, 2009

Ticked Off

I guess I need one of these things because I'm really ticked off.

I'm not a greedy person. Well, okay, when it comes to trail mix I don't like to share much, but I'm not the gold digger type.

Without going into a lot of detail (because the yahoo group is private and it would defeat the purpose of said group to blab all the private stuff here, on my public blog) it's really been an eye opener for us all to compare notes.

Seems quite a few trial participants are getting monetary reimbursement for their participation, while others of us are not.

Not only am I not getting paid, I'm not getting gas money and I have to drive 4 hours round trip. They didn't even bother to offer gas money the one time I had to return right after my last visit because they screwed up my blood draw and had to redo it.

Okay, okay, I'm trying to calm myself down by remembering the reason I'm in the study at all...

To further the advancement toward finding a cure, or at least finding an oral drug for all of MS kind.

And to sell you a bridge...

Okay, I admit, I'm in it to get the good stuff and get to my happy place where my symptoms are so mild I can go back to my perpetual state of denial.

But when I'm sitting here broke and hearing the discussion of payment for involvement, I'm starting to think maybe I can cough up a pair of cajones next time I'm in Jacksonville and squeak out a soft plea for compensatory privileges.

Not only am I not getting paid...neither are any of the places doing the testing on me, apparently, because I am "over 30 days past due" on my last eye exam, and I just got a bill for the excision of my mole that Novartis insisted was my "pound of flesh" to part with if I wanted to stay in the extension study.

One nice lady from the University of Florida's collection department called last week to discuss the bill. I told her, in my most exasperated tone, that they bill me EVERY TIME for the eye exam and I always remind them that I am a study patient and the Research Department is supposed to be billed.

I gave her the contact names, phone numbers and the study number. She thanked me and told me she was sorry and that they would straighten it out. I told her they always say that.

I also told her that I have enough legitimate reasons for bad credit without them trying to help send my credit score into the negative numbers. She did laugh.

I laughed too. It's either that or cry. It's all worth it when I pop that pill every morning and remember what I felt like a couple years ago. You can't put a price on feeling good...

unless they start charging me for the pills.


  1. BASTIDS!!!!!

    I LOATHE pharmaceutical companies even more now that I've heard your story.

    Again, BASTIDS!!!!

    (Is there any relief in knowing I am swearing FOR you on the opposite coast? NO? Hmmm...I didn't think so.)

    Linda D. in Seattle

  2. Ouch! Don't let the b'stards grind you down, though. They can have a few choice cusswords from "across the pond) here in Ireland.

    I'm lucky, I guess, living within walking distance of the hospital here in Dublin, and they've generally hidden the bills from me. I get MRIs at a neighbouring private hospital, and they sent me the bill once, but that got fixed quickly enough. The confusion may have been that they called me back for additional scans a week later, with some odd "weighting" that required them to adjust the machine - which bumps up the cost further. The bill was UGLY.

  3. The sharing of information is great, but then sometimes it's not.

    Darn, it really should be the same for EVERYBODY....and gas money as a minimum sounds good.


  4. Jeri,

    I was getting paid the first year I was on the study but as soon as I signed to contiue I haven't gotten any checks in the mail. It thinking about emailing my study nurse and ask her about it. It states in the contract I signed that I would get $25 dollars for every visit.



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