I arrived home from work on Monday night to a very brightly colored, giant-sized envelope from Smiths Medical.  'Important Information' it declared.  'Open Immediately!'

So I did.  And read:  Your current Cozmore System warranty expires in December of 2008.  Please begin the process of replacing your pump immediately, as we will be unable to replace your pump should something go wrong after December 9, 2008.  Alright then.  

The very next day, I went online and printed out both an Insurance Information form and a Medical Necessity Form.  I filled out the first form, signed and sent to Smiths.  Then I faxed the second form to my Doc (who is amazing) and by that afternoon, it was filled out and faxed to Smiths.  Great.  I'm on my way to a new pump.  Right?

Flash forward: Wednesday afternoon.  I get a message from J.   J says "Nicole, this is J calling from Smiths.  I have some information regarding your insurance and your new insulin pump."  

I call J back and I'm told that the cost out of pocket for my new insulin pump is going to be $1100.  I say "Oooo, man.  I don't think I can afford that right now."  J explains that my insurance will only cover $2500 of the cost because I have a cap on Durable Medical Equipment (DME).  The pump is considered DME.   Then J says, "Oh, and wait a minute.  Oh, man, I think you've already burned through most of that cap already this year on supplies...  Can I call you back?  I want to be sure I'm giving you the right information." 

"Sure," I say.  I want to be sure he's giving me the right information...  

Half hour later, J calls back.  "OK, so your DME expense DOES include your supplies.  To this date, you've used almost $2000 of the $2500 allotment.  So, I know this is not good news.  But, your total out of pocket cost for the pump if you bought it this year would be $3100.  BUT - you could wait until next year and then your cost would only be $1100 out of pocket..."  

"But... But... That means none of my supplies are covered for next year, right?"  

"Right.  So, if you want to take some time to think about it you can.  So you know, if you wanted to wait, and something went wrong with your pump, we could send you out a loaner and make an agreement for up to 12 months - then you'd have a whole year to decide."  

"OK."  I say, my eyes filling with tears.  "But what about after that?"  

Now, spinning through my head during all of this are the following facts:

1.  I have been through 7 pumps in the four years I've worn my Cozmo.  Seven.  That's almost two per year.  I've had batttery issues, screen issues,delivery issues.  You name it issues. 

2.  I cannot go back to MDI.  I cannot return to a life of convulsive insulin reactions at least three times a month.  Even wider swings in bloodsugar.  Hypertrophy all over my body.  Eight or nine shots a day.  Cannot. Do. It.

3.  I am a worrier.  The loaner plan might be OK for someone who isn't a worrier.  But, if I have to go that route, I will be beside myself and in a state of near-constant dread.  What will I do when the year runs out?  How will I go back to MDI?  

Then J says, "Why don't you try talking to your employer.  Sometimes, they can negotiate with the insurance company about these sort of things.  Do some research and see what you can find out."

"Alright," I say.  Wondering if there might be a way around this.

So I did a little research, starting with the OC.  I found two mentions of people who'd gotten their DME cap overturned using an appeals process.  That's good - I thought - that there's an appeal option.  I emailed with someone who'd actually succeeded in getting a cap lifted.  

Then I called our HR Rep.  And I have to say, the reaction I got was unexpected.   "Really?"  She said, "I can't believe this.  At the start of this year, when we were choosing a plan, we used your case specifically with our Insurance Company Rep, and we were assured that your supplies and equipment would not become a problem.  Now I'M mad.  Send me an email and I'll talk to the rep - give me all the details you have."

I did that immediately - and included information about the people I'd emailed with who'd appealed DME caps and won.  I asked her to ask if we had that option with our insurer.  

She cced me on an email she sent to the rep - with all of the details I'd provided, even stressing that this kind of exception would only need to be made every four years because of the warranty expiry time on insulin pumps.  

Now - it's a waiting game.  

But I have to say.  It feels damned good to have someone on my side - a partner in my patient advocacy.  It feels great that that partner is my employer.  I am blessed.  And I feel now like there's some hope.  A light at the end of the madness tunnel.  

This incident has me thinking.  How the hell do people get along without health insurance?  Or health insurance that doesn't offer adequate protection?  How do people do it when they're all alone?  

More to come on this, but in the meantime - how have you dealt with these kinds of issues?  And have you found your employer to be supportive or apathetic?  Are you willing to push the limits - to ask for exceptions or are you more likely to just take the answers you get?  Do you think it pays to be stubborn when it comes to your own advocacy as a patient?

I'd love to hear your thoughts...