Getting over the hurdle of Doctor approval

[jacone]

Ok, so I am very frustrated! How are all of you getting a prescription for the CGMs from your Dr.'s? I can't even get our Dr to approve using the OmniPod pump, much less a CGM!

We go to a hospital/doctor that is very conservative, and EVERYTHING goes through the CDE's. The CDE's are very opposed to anything new or cutting edge because 1) it is not tried and true 2) it would be more work learning something new.

I feel as though they will never be onboard to write a prescription for anything other than the 3 pumps they endorse. I am looking to go outside the city, state, and/or do whatever it takes to make this happen. Do your doctors easily agree or is it a fight as well?

:confused:
Amy,
Mother of 3 girls
Olivia, 5 & dx 7/4/05
Sophia, 2
Victoria, 5 months

[Amy C.]

Most folks find it an uphill battle to change the ethos of an endo practice. I would look for another provider.

[rmccully2000]

Amy,
We got the same reaction to Omnipod from our CDE. She told my husband that it was dangerous and not for children and she would not prescribe one.
On our last visit in November, I got the feeling she may reconsider, but I'm looking into the possibility of finding an endo who has "Pod" prescribing privileges like I mentioned before!

As far as Dexcom, she was more accepting of this system and it only took a little convincing to get a prescription. I had to promise that I would not eliminate fingerpokes and that I would not make therapeutic judgements based on CGMS alone (which I totally agree with!!)

If they don't seem willing to budge, find another endo. Call the rep for the whichever system you want and ask them for the names of doctors that they have filled prescriptions for. This thing is freaking awesome (with it's frustrating quirks thrown in due to first generation) and will make raising a child with D so much safer and easier.

Good Luck,
Becky, mom to Mason, 6 dx 11/05, Dexcom 10/06

[EmmasMom]

Our team is what I would call "Old School". NPH for everyone, pumps only for much older children who can manage their own D, they rarely even prescribe Lantus.:rolleyes:
I had to prove to them that I was very well educated about all of the pros and cons, and willing to do the work for both her pump, (at 14 months) and her CGMS, (she's the only child in their practice wearing one). I presented folders of research every time I wanted to try something out of their norm, and despite their reputation for being impossible to sway they were actually very willing to let me do it.

With the CGMS I had been casually mentioning that I was interested for a while. Once it hit the market I made sure our apt was with the more receptive of the two endo's, and made my case. I told him that I knew it was expensive, that there was no insurance coverage, that it wasn't yet approved for children, that it wasn't perfect and that I would still have to test regularly. That I was only considering it as an additional tool, and not a solution to all our problems. That we might only use it occasionally for basal and bolus testing, etc. I really wanted to downplay my excitement and make sure there was nothing negative he could say...;) It worked!

As with everything else I've pushed them to do they have been very pleased with our results.
I say push for what you want, if they don't respond push harder, if they still wont budge find someone who will!!!!!

I wish you luck!!!!!:)

[jacone]

Thanks for your responses! We have an appointment next week with our endo and I want to be prepared when I meet with her. I would have to say that she is one of the more aggressive endo's in the practice of 10 of them. So I will just cross my fingers and see what she says.

I think I am going to wait for the Navigator to become approved and push for that one I think. I have heard so many great things about it!

My wish list is:
OmniPod pump (not available in Texas yet)
Navigator CGM (not FDA approved yet)

So, do I get the Cosmo now and use the Dexcom with itl? That is my real question right now.:confused: Is it essential to be on a pump when you go on a CGM? I would be using the CGM as a trend tool, but it would be a lot easier to correct if on a pump.

Any thoughts?

[rmccully2000]

I am in the same situation as you! I have contacted Cozmo but I have a $2500 limit on pumps so I would have to pay $2000. If I didn't have to pay such a huge portion out of pocket, I would get the Cozmo and then pay for the Omnipod out of pocket when it became available, since it's only $800 for the starter kit.

Personally, I wanted the CGMS before the Pump, but everyone's different. Now that I can see the trends, I am even more anxious to get a pump, or at least an I-port because there are so many times I want to give him a small correction.

But I will tell you this. Mason's A1C was 7.9 before the Dexcom and 6.3 after, all on MDI. I know there weren't undetected hypos to skew the results either! I was able to figure out how to get him stable overnight (lantus in the a.m. since he dropped 150 every night around 1 am when giving him a pm shot) We tried split dose Lantus, but it still caused nighttime drops.

So even without a pump, I have made a huge improvement, just by being able to see what the heck was going on with his blood sugar, instead of guessing :) A pump is another tool that will help us even more and I can't wait to get one so I can tweak a little more effectively.

I sure wish that Navigator would be approved soon because, man, this technology is going to change your lives for the better, although they will probably have their first generation issues also. Even with the bugs, it will be life changing, like Dexcom and MM.

Ok, enough from me! I'm having a good CGMS week!
Becky,
Mom to Mason, 6 (wearing a new Dexcom sensor on his left butt cheek and an old Dexcom sensor on his right cheek so he will have eyes on his butt) Yes he is a strange child ;)

[EmmasMom]

That's tough Amy, here are a couple of my thoughts... for whatever they're worth.;)

Pump therapy can offer you so many solutions, it makes bolusing and correcting so simple, you can adjust basals to fit what you actually need, it offers improved quality of life for parents and children. I highly recommend it to anyone. Once you start you will wish you hadn't waited!! Combining it with a CGM offers you the most possible control.
Most kids have no problem with the tubing, and keeping the unit attached to your child is actually very important whether it has a tube or not. It is the only way to ensure you will have it with you when you need a temp basal, or a quick bolus, or to suspend it because you're low etc.
If you also have another device with a separate monitor you will have two very important, very expensive medical devices that your daughter will have to keep up with that are not attached to her, (I'm thinking kindergarten :eek:)
I only bring this up because when my daughter was wearing the Guardian RT the additional control unit was cordless, but lost communication anytime it was very far away, or got left sitting on the couch when we ran out the door, etc.. so I had to keep it on her body at all times if I wanted it to work well and not get lost. She also had her pump on the other hip, so she looked like a walking science experiment. To us having one small unit that does everything is much simpler, and we have never misplaced it!;)

If you get the Cozmo, which by all standards is a great pump, you will eventually have one unit that does everything, and with a very small chance of getting lost. It also has software options that the OP does not offer, (it can not transfer data to a computer), I think using computer software to analyze pumping data is one of the key features of using a pump well, and the cozmo's actually much more child friendly than a PDA. Oh, and the last time I checked OP has no idea when they'll be available in Texas, have you heard anything about when?

Just some thoughts. I know it's a tough decision!

[jacone]

A few things on your post Becky and then to Emma's Mom...

1) How do you know about the i-port? I have a family friend that works for the company in Austin and I am supposed to be getting a few samples sometime in Jan-March. Another reason waiting for the pump...

2) So it seems like if you went with the Cosmo and paid the out of pocket, and then paid out of pocket for the OP the $800, would insurance still cover the additional pods? The costing is setup different for the OP, so you pay as you go, instead of so much upfront on the pump. Would they pay $2500 for the pump and then pay the higher cost of the 3 day pods? I haven't checked with our insurance yet on how that would be handled. No reason to go down that headache road until you have to.

3) I want to see the trends!! Overnight lows are obviously the scares for all of us, and we have them about once a week. The other night we had one at 5am, but when she went to bed she was >300! :confused: Right now our daughter is great about coming to our room and letting us know, but I constantly worrying about hypo unawareness!

4) We are still on split dose Lantus. What is his Lantus-Humalog ratio? I am trying to bring down her basal (lantus) and bump up her bolus (humalog) and was curious what other's ratios are.

Thanks!

[jacone]

Hands down I don't disagree that pumping is MUCH better control! I am very anxious to get on one, and so is my daughter. I need to strike while the iron is hot for her. I spoke with the VP of Sales for OP, and the word is - best case is June, worst case is December '07. I can do June, but December is so far away at this point.

On the pump though, since we are not on one, when we do choose it is a 4 year commitment for the Cosmo. The tubing concerns me because of activities and everything. We are in swimming, gymnastics, ballet...and I don't want to be disconnecting all the time.

I understand your point though about losing it and keeping it with you at all times. We would keep it attached on a belt somewhere in a purse as a rule of thumb. I do wonder about the data transfer though and the software benefits. That is definitely something to keep in mind...

Thanks!

[rmccully2000]

A few things on your post Becky and then to Emma's Mom...

1) How do you know about the i-port? I have a family friend that works for the company in Austin and I am supposed to be getting a few samples sometime in Jan-March. Another reason waiting for the pump...
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I remember when it was announced that it received FDA approval. Then a guy at the gym was talking to me about it because a friend of his is investing in their company! So I signed up for them to let me know when they are availble. Finally, something that will be available in Texas FIRST ;)
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2) So it seems like if you went with the Cosmo and paid the out of pocket, and then paid out of pocket for the OP the $800, would insurance still cover the additional pods? The costing is setup different for the OP, so you pay as you go, instead of so much upfront on the pump. Would they pay $2500 for the pump and then pay the higher cost of the 3 day pods? I haven't checked with our insurance yet on how that would be handled. No reason to go down that headache road until you have to.
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They consider the PDM part the pump so if I get them to pay for a Cozmo first, I would not be able to get another pump through insurance for 3 years.

With our current policy, insulin pump supplies, including reservoirs, tubings, cartridges, are considered a prescription drug product. So the pods are not covered under the Durable Medical Equipment $2500 limit, but treated like a prescription. I would have a monthly copay for pods, just like I do for insulin, syringes, etc. A mom on the ADA parent board has UHC and also has hers set up this way. I think she pays $30 a month for 10 pods. Sweet! This is written in our insurance policy Summary Plan Description, available from human resources at our employer. Get a copy of yours and go over it with a fine tooth comb. It may have different information than if you just call the insurance company.
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3) I want to see the trends!! Overnight lows are obviously the scares for all of us, and we have them about once a week. The other night we had one at 5am, but when she went to bed she was >300! :confused: Right now our daughter is great about coming to our room and letting us know, but I constantly worrying about hypo unawareness!
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I totally understand. With Dexcom, there is often bumpiness, or noise from sleeping on the sensor so we get some false lows. This part needs some work but the important thing is being able to make more informed decisions before they go to bed and during your regular nighttime testing. You probably won't be able to eliminate night checks on these first generation devices. But you will have more data and not just guessing! Obviously, the Navigator is rumored to be more accurate at night but I think I read that some people in the trials still get false lows occasionally.
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4) We are still on split dose Lantus. What is his Lantus-Humalog ratio? I am trying to bring down her basal (lantus) and bump up her bolus (humalog) and was curious what other's ratios are.
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Gosh, right now he gets 6 units of Lantus, and an average of 4 units of Novolog per day, so I guess that's a high ratio. I did have his Lantus higher, but it was causing too many lows.

Thanks!


No problem! By the way, I love the name Livy. My best friend in high school was and Olivia and we called her Livy :)
Becky
Mom to Mason, 6

[Adinsmom]

Hope you do not mind me jumping in.


What is an i-port?:confused:

[EmmasMom]

Hope you do not mind me jumping in.


What is an i-port?:confused:

It's like an infusion site, but instead of being hooked up to a pump you inject insulin through the port with a syringe.
It's a way to have fewer injections when you're on MDI. We looked at them at a recent ADA luncheon, they're a great tool for anyone who's not ready for a pump. Pretty Cool!

Here is a pic of a similar product called insuflon.