Wednesday, December 07, 2005

The Call

After reading Printcrafter's blog over the past week, I found myself -- like many others -- desperately wanting the Guardian RT Continuous Glucose Monitoring System (CGMS) for my son. My previous post illustrates quite clearly why this device would be a godsend.




Well folks, we got the call.




Although Joseph's CDE said she'd put us on a list to try this device, I had begun to think she might have confused the Guardian with its predecessor (a CGMS that did not provide the patient with real-time blood sugars-- only data to be downloaded and analyzed later by the clinic). You see, the Medtronics website states that the the Guardian is in limited release-- seven cities only (and we don't live in one of them). Further, this CGMS is FDA approved only for those 18 and older.

But still, we got the call.

This afternoon, while sitting on the floor doing a jigsaw puzzle with Evan, the phone rang. I didn't recognize the name on caller id-- thus, I almost didn't answer it. But, just before the call would go to voice mail, I picked up.

"Hi, is this Sandra Miller?"

"Yeess?"

"I was given your name by the University clinic... I'm calling from Medtronics."

"What?" Immediately, I got up off the floor.

"I understand that you are interested in the Guardian RT system for your son."

"Yes, I am. Very interested." At that moment, my heart pounded so hard, so fast, I thought it might burst right out of my chest.

"But wait," I said, "this is the Guardian RT, right? I mean, I thought it wasn't available here. That you're only releasing it in seven cities."

"Yes, that's right. But, we have a bit of a unique situation here. You see, because we've worked closely with the University of Wisconsin's pediatric diabetes clinic here, we are offering the Guardian to their patients."

This cannot be happening. Christmas had indeed come early this year.

"Now" I began, a bit tentatively, "Uh.. you do realize that my son is only 10?"

A pause. Probably about two seconds, but it felt much, much longer.

". . . Well you see, Sandy, while it is true that the Guardian is FDA-approved for those 18 and older, we are offering it to kids--- as something called an off-label prescription."

Okay, no one calls me "Sandy," but she could have called me Ralph, and I wouldn't have cared.

"So what do we do? How can we get a trial with this going?"

"I'm afraid there is no trial.

"Huh?"

"The thinking is that, due to the rather steep learning curve of the device, people would be more likely to give up on it before actually experiencing the benefits."

Oh.

And that is when she told me that insurance doesn't yet cover the Guardian. Our cost would be:

$2,390 for the initial hardware purchase

$ 400/month for 10 sensors

And just like that, my heart sank. All this time, I assumed that insurance would cover this.

(Later, I would go back to Printcrafter's site, to his archives, and see where he spells all of this out for us).

With Christmas at hand, car repairs looming, a property tax bill due.... well, this is not going to be easy.

But, damnit, I want this for him so badly.

Last night, Joseph was high. A tiny correction brought him down fast-- maybe a little too fast, as it seemed like he was rebounding up at breakfast.

We test day and night, and still we can't catch it all. We can't truly know what's happening.

Saturday, while I was out Christmas shopping, he plummeted to the 40s, rebounded to the 200s, then crashed to 48 just an hour after dinner.

This was after a week of no lows; no major highs.

And then, of course, there was that 21 on Sunday.

I don't know. I HATE that money is a concern here. If I were working, this would be a no-brainer...

Now, the good news is that once an insurance code is assigned to the Guardian, insurance coverage is likely to follow. Unfortunately, a product needs to have been launched six months prior to when codes are assigned (which happens in January).

Bottom line-- an insurance code will not be assigned any earlier than January 2007.

So, Ryan and I need to sit down and do some math. And we also need to talk with Joseph about this. And see just how and when we can get this for him.

I'll keep you posted.

16 comments:

Penny said...

Sandra, I feel your pain. I want Riley on the pump and insurance covers all but 20%, but 20% of thousands of dollars is still a lot of money. I have told my husband if I have to get another job or take out a loan, I will. I like to think that when it comes to the health of my son, I'll do what it takes. I try not to think about the money part of it, but you can't help it. We've got to eat, have a roof over our heads, etc. I hope huge winfall comes your way. I would be horrible if you're given this one shot opportunity and you can't take advantage of it.

Wil said...

I have my fingers and toes crossed for you.

We hate to weigh health and money, but that is what we must all do.

It won't do any good to have him on a Guardian but not have a roof over his head!

Marion said...

Sandra, don't give up on Medtronics - think outside of the box. You are so smart and so damn convincing, you are analytical, detailed and a salesperson! Couldn't you convince Medtronic that you would be the perfect person to have try this product for them while giving them valuable data; you are not the type to give up and complicated things don't scare you! Get them to see how they would benefit by giving you this product in exchange for valuable information. They must have a new design validation they have to do with this product (even if not in a clinical trial they still have to validate new intended uses in a simulated/actual use condition). Sandra I believe you got this call for a reason - don't let it end there.. Believe me, having a user like you would be valuable to a medical device company!

Andrea said...

Reading your post...I was getting SO excited for you both. But as I continued reading it, I felt your disappointment. I know how badly you want this for your son, but maybe it's not meant to be at this time. Maybe there's a reason why there's this cost obstacle. I would hate to hear that he got this supposed great tool in managing diabetes, and it turned out to be more trouble than it's worth or not what you had hoped or expected. I think you'd feel even worse, if that what ended up happening.

My opinion is to be patient and wait. It will be available to you (and within your budget) in time.

Hang in there :)

Tekakwitha said...

Wow, what exciting and difficult news Sandra.

I listened to a piece on NPR yesterday about what one would do if they won $40 million. People rattled off all typical things like cars and houses etc. I'm still paying off my hospital bill from almost 2 years ago... If I won millions of dollars I hope I'd send all that money right out to every single person who was in need of one of these precious pumps (or the new Guardian!).

Good luck!

julia said...

Sandra, that's why we don't have one either. I talked to Olivia's CDE about this yesterday and she said the insurance companies won't approve this for quite a while. She seemed to think it would be a good year or so. *sigh* I don't know why they don't GET it. It's cheaper in the long run to give people with d the tools they need to manage their care. Give it to them NOW so they aren't sitting in your hospitals in 10, 15, 20 years, racking up huge charges because you withheld promising technologies. Jerkfaces. Every single last one of them.

Jamie said...

Sandra - I feel your frustration! It's horrible how they make you wait on these things just so they can approve them. I agree with Julia's comment. Jerkfaces - all of them!

I hope things work out for you, but if not, in time Joseph will get one - it really stinks how it all goes down at times.

Thinking of you ... let us know how it all turns out.

Megan said...

All I can say is that I really hope you get this. The device seems so promising, it has its bugs, but man, so always have a glucose reading on hand, and to be warned of lows- it sounds like a godsend for so many people.

Melissa said...

THIS WILL HAPPEN FOR YOU!! You are such a brilliant woman I know that you will not the some silly little thing like reality stand in your way.

News channels would eat up a story like this like it was the geatest treat on the planet. JDB gets soo much press, why not make your son a posterchild for this new medical find, and get the community/church/local businesses involved. My mom always tells me the God will find a way as long as you are trying your hardest and I have to believe her.

You have the gift of creativity and this is the time to use it to its fullest ablity.

Violet said...

You could "work the publicity angle" without bringing Joseph directly into it. Invite the Medtronic rep to read your blog, then imagine the free publicity you would create for this device. Every parent with a CWD would read you every day, FDA approval or not. Printcrafter's very excellent blog is for adults, but you would provide an entirely different perspective for a different (and very motivated) part of the diabetes community: parents who would do anything to help their children. Good luck.

Elizabeth Snouffer said...

I have no advice but will only say this -- every step in successfully treating my diabetes was done with a lot of grit, persistence and ambition. It was a fight (and still is today). This is just how it is - we all must demand and fight for the best medical care. This is true in every therapeutic category - cancer, aids, mental illness...and so on.

Most people do not understand this and never will. But it isn't really important that they do -- just don't give up fighting for your son's health. One day, he will take over the struggle. You're teaching him a great deal.

Best

Elizabeth

terrilynn said...

I am in the same boat here with Liam with regard to a pump. Both of us work and we have good health coverage on him, but we pay for it out of our own pockets. Even if we could afford the pump itself (and that 20% it would cost makes it a big if), the monthly cost for supplies is still not doable at this point in time. It's extremely frustrating and there are many nights I lie awake wondering what kind of damage I'm doing to his future health.

Good luck in your pursuit of this.

Wil said...

Sandra--

Wanted to give you an advanced heads up that I've had my first "real" trouble with Guardian. Mulit-part post starting tonight.

As you are on the "cusp" of getting one I wanted you to be the first to know I've had my first negative experince.

Figgured you needed all the facts....

Wil said...

PS: I liked what Violet said. A Guardian Blog from a parent's prespective would be wonderful!

(and don't panic, I'm not in the hospital or anything like that...)

Anonymous said...

No doubt you know of the other continuous monitors that you can use with any pump or even on shots. The Dexcom is already out and the Navigator should arrive very shortly. Either would presently be more comfortable to wear than the Guardian, though Minimed has claimed they will have a sensor that inserts along with the set in the near future, so one site change, not two. Of all the sensors, research favors the Navigator as the most accurate. Users presently are able to trick the continuous monitors and wear them for many days past their intended use with good results, I believe 9 days seems to be standard. Tricking the sensors will make them much more affordable, though in the future that may not be possible. So Joseph does not have to change his pump, he, even now, has choices. Still too expensive without insurance coverage but if he can wear the sensor for nine days instead of three, somewhat more affordable. Still two site changes though, which he may not agree to.

phishery said...

Sandra--in reading about the big swings in blood sugar I wanted to pass along my newest website dedicated to helping diabetics (I am a type one that is now 33 and had it 29 years)). It can be found at www.dsolve.com. I too am very anxious for the technology to solidify and mature and cheapen and hopefully be covered by insurance, but until then I think what you will find on the site is the best you can do to get normal blood sugars and lessen the roller coaster of blood sugars. I hope the link helps. Good luck with your son.