Insurance troubles - insulin pump for a person with Type "other" diabetes, not 1 or 2

I am having trouble getting my insurance to pay for an insulin pump.

I have Cystic Fibrosis Related Diabetes. It is a unique type of diabetes, still requiring intense insulin therapy. (I take from 5-8 shots a day) It is not Type 1 and it is not Type 2, although shares some of the characteristics. Even though my specialist endocrinologist has explained my special type of diabetes to my insurance company, they still will not cover a pump because I am not “Type 1”. The problem is with my insurance, not with my doctor, as she is doing all she can to help.

Does anyone have any advice?? I have one final appeal left and need all the ammunition I can get to prove my case.

Thank you landileigh,
I have never heard that there is more than one type of “Type 1” diabetes before. Where can I get more info about Type 1b? Can I be Type 1b with a normal c-peptide?

CF Related Diabetes (CFRD) seems to be really unique. I have been asking around the CF circle if anyone has insurance advice, but there are so few of us with CFRD, there aren’t very many people to ask. Most everyone so far has not had a problem getting a pump. My insurance is just super stubborn about it.

Here is a portion of the denial letter from my insurance company from my first appeal. I have only one more appeal left.

“This appeal was reviewed by an independent external consultant, Board Certified in Internal Medicine with a Sub Specialty Certificate in Endocrinology Diabetes & Metabolism…
… Although the patient has met the criteria of being on on intensified insulin therapy program, and has a hemoglobin A1C of greater than 7%, there is no documentation to support low endogenous levels in the member. Her C-peptide level is within normal limits, which is not unexpected, since cystic fibrosis is associated with impaired glucose tolerance rather than primarily decreased insulin production.”

Now, I am quite confused. I thought that CFRD was caused because of decreased insulin production because the pancreas is damaged and not able to produce enough insulin to keep blood glucose at safe levels?

"The continuous glucose monitor was denied again because it “is still considered experimental and investigational, with the therapeutic benefit yet to be proven in large-scale long-term studies. … continuous glucose monitoring system is considered experimental / investigational / unproven and is not in accordance with generally accepted standards of medical practice at he the present time, it would not be considered medically necessary.”

Check with your employer and see if they can not do some arm twisting also. If your employer is considered self insured then they actually can tell the insurance company that they have to cover the pump. Good Luck.

This may not help you, but maybe someone else. I am T2. When my doctor filled out the forms for a pump, instead of checking the T1 or T2 box, he wrote insulin dependent.

I don’t know if this helps, but I bet it might explain what the insurance company’s point of view is. I was doing some research on CFRD, and it seems that in many cases, high blood sugars are caused by insulin resistance. NOT BECAUSE OF WEIGHT, but because there are many infections and a lot inflammation that are on going. So, even if you are producing a normal amount of insulin, you can’t compensate.

It’s still pretty stupid for the insurance company though. The more tools you have to better manage this, THE BETTER YOUR HEALTH and the easier on their pocket book. It might do some good to get some monetary statistics to show exactly how much money complications cost, compared to the pump and supplies.

Again, I don’t know if that helps at all, but if that’s what they are thinking, then maybe your doctor can make an argument geared to that aspect of why you need a pump. Good luck! I hope you win that fight!!!

Hi Mandy,
I understand what you are saying. Thank you for your insight.

I am still sorting all this out. I am far from an expert. I am confused as to how the “independent reviewer” believes I should take care of my high blood sugar levels. I am taking shots, up to 8 a day because of my crazy nutritional needs from Cystic Fibrosis (6-7 small meals a day). I take both Lantus and Humalog. Does the reviewer think this treatment is unnecessary? Why don’t they think a pump will help me?

Another question, even though my fasting c-peptide test was normal, I think this means I am able to make enough insulin for a normal baseline (if I didn’t have resistance), but does that also say I can make enough for peak times, for meals? Am I on the right track here?

I am sorry to hear about your insurance problems. Unfortunately, we see this sort of discrimination against people with non-juvenile type 1 all the time. For this reason, we do help people with CFRD who need insulin. If your insurance fails to help you, please contact me at lahle@ipump.org. You can visit our website at www.ipump.org to learn moure about us. It is specifically stated in our bylaws that one of the forms of diabetes we do provide assistance with includes forms others do not cover including MODY, bronze diabetes (hemochromatosis), and, Cyctic Fibrosis Related Diabetes.

While insurance companies tend to us the C-peptide test to rule out the “need” for an insulin pump, we do not. Most folks do not realize that there are many types and causes of diabetes but for those who need insulin it costs just as much no matter what kind of diabetes you have!

If you live in California, we can also provide you with free legal counsel from an insurance appellate specialist.

Hi,
Can you tell me if this was ever taken care of I might be able to help. I have CF and CFRD they could not put me on the pump fast enough. I was like you I took 10 shots a day of 4 different insulin’s. It is not scientifically Type 1 or Type 2 but it has to be treated like Type 1 you can still get DKA.

The insurance needs to be aware that you need a massive amount of calories. Up to 4000 daily sometimes with nearly half of those calories coming from carbs its is hard enough. Both illnesses will make it hard to gain or keep weight as well as muscle. You and I both know that good strong weight is so important.

If there is anything I can do I will so let me know.
Be loved you are and be well

Thanks Laura,
Yes I did get insurance to finally grant me coverage of both a Minimed 522 and the CGMS. It took a miracle! By the insurance policy no one could get a pump unless you were positive for antibodies or had a decreased C-Peptide level. I understand what you are saying about weight, unfortunately my insurance was the one who didn’t care. I was able to convince them how much a pump would be of benefit when I explained to them in monetary terms of how good control equaled better lung function and less hospitalizations which equaled less money out of their pocket. Dollars talked and I won.

If anyone reading this has CFRD and is in a fight with their insurance for a pump contact me and I can get you a copy of my appeal letter.

I started using my insulin pump in June and was able to get my A1C down from 8.3 to 6.0. I couldn’t have done it without it.

Laura, I was told we (with CFRD) can’t get DKA… something about our pancreas still making some insulin or something about the liver… I’ll have to look more into it. Maybe we can chat outside this thread. :slight_smile:

YAY! Good for you

The DKA is rare it takes quite a bit to get it with CFRD. Yes we still make some but the difference is the cell change in the insulin we make not really a resistance to our natural made insulin like a Type 2.

So the longer you have type 1ish the easier it becomes to get DKA because of changes on the beta molecular level. But it is rare.

Outside the thread lets chat as I am sure this will only confuse peeps.

Congrats on your A1C I have not been so lucky can’t seem to break the 8 barrier. I am trying though but I am an old CFer at 42 so it may make things a bit more hard. I have serious plans to be an long white haired old lady so I plan to keep on the BG thing.

Be loved you are

Laura, I could use a copy of your appeal letter. I’m in a fight with my insurance company who doesn’t want to pay for my pump. I am 54 and retired with a 25 year old kidney transplant. I would like to explain to them in monetary terms the benifit to them.
Thank you
Ed
my email is duribear@cox.net

1/25/09

Ed,

If you are on Medicare you will have a truly uphill battle unless you “fail” that stupid c-Peptide test guideline. Even then, Medicare typically “rents” the pump for you, which you never own, and you may have to pay a monthly fee for (some of our clients pay as much as $90 a month in “rental” fees alone).

If you cannot get your insurance company to budge, please email me OFF LIST at lahle@ipump.org. iPump.org is currently accepting applications from patients for Animas insulin pumps. We do not use the guidelines that insurers do so perhaps we can help.

Best,
Lahle
Founder/CEO iPump
www.ipump.org

Hi Ed
I did not have to appeal I was dying all the time so I guess that seemed good enough for them. However for my CGM I wrote down a month worth of logs and explained that stopping those high and lows and if that could be done then the cost they were paying for hospital ER visits and hospital stays could be cut back in a serious way. I gave them the average cost of an er visit along with the average day in the hospital. It was way cheaper to give me a CGM. But I did that in the start and they approved it so it was not an appeal.

What is your insurance Ed?
Have they already refused you?
Let me know
Be loved

Do you have insulin antibodies? Has your doctor tested for this? Sometimes peoples bodies make antibodies against insulin and not the insulin producing cells themselves. Regardless… you are a Type 1 in the respect that you require insulin. Diabetes classifications are changing from Type 1 & 2 to Insulin Dependant and Non-Insulin Dependant. You have Insulin Dependant Diabetes no question.

Hi Kevin.
It’s been a while since I originally started this thread. Since then I have done a lot of research. Apparently there is a category of Type Other, reserved for those of us rare folks who are not Type 1 or Type 2. Many of us, if not all of us, are insulin dependent, but Type 1 is defined by a disorder of the body’s immune system by the production of antibodies that attack the pancreas. The cause of “Other” diabetes is sometimes known, like for those with pancreatic cancer, pancreatitis, or for a few of us with Cystic Fibrosis (not every one with CF gets diabetes), but it is not caused the same way as Type 1 or Type 2. Unfortunately since we are an extreme minority we don’t get a lot of press. It is just another one of those misconceptions that diabetes has. If there is a cure found for those with Type 1 diabetes, there still will be no cure for those of us with Type “Other”.
Check out Wikipedia for a short explanation. http://en.wikipedia.org/wiki/Diabetes
We “Other’s” do exist. :slight_smile:
Hope that clears things up.

OMG! I have really learned a few things here!! i can’t believe there is another type of diabetes.

I am on the pump now and was classified as a T2 before (maybe T1 by now). Am on Medicare because I retired due to disability. So I am another one that has gone through the Medicare requirements. My c-peptide must have been very close because Medtronic and my doctor had to fight for it. But, since it was really no time before I got my pump, they must not have had to fight that hard. Personally, I didn’t even know they were fighting. God bless their little old souls!

Someone once said [on this site] that the question is not whether it would serve you better in the long-run but it’s a matter of cost. They are betting you won’t be covered for very long. In this day and age of people switching jobs right and left and layoffs, they’re probably right most of the time. Bottom Line, that’s all it is.

Thank you for all the information in this discussion. I am glad that it came back up again because I am just new since late December. Thanks much!!!

Lois La Rose
Milwaukee, WI

For who all who are interested, I was granted approval for BOTH the insulin pump AND the CGMS. My doctor said it was my letter that got the approval (she is really sweet). The letter was included with a few research studies showing that the pump improved control in people with CF related diabetes (I don’t know which studies she sent).
I posted my letter on my blog on the link below.
http://saltyandsweet.org/2008/05/08/final-appeal-personal-letter/

My letter is definitely focused on how CF and diabetes are related and the financial implications for the insurance company, but hopefully you can get an idea for your own letters.

I started the pump in June 2008 with an A1C of 8.0 and in August 2008 I was able to decrease my A1C to 6.0 because of the freedom and convenience it added to my life (that is before I had the CGMS). I am far from perfect and I know my A1C has probably gone up since then, but I know it is no where near 8.0 anymore. :slight_smile: Highly recommended!!

Hi. I would love to get a copy of your appeal letter for the pump. Thankyou for offering. I’m trying to help my brother write an appeal now and I’m sort of at a loss for words. I’m glad that things are working out for you. Thankyou and God Bless.

Please email to biryana@hotmail.com