Admitting I Was Wrong . . . .

I’ve thought long and hard about whether I should write this post.  For weeks I was certain I would never put this out there.  But then I thought about how it is important to me to be truthful.  So here comes the part where I admit I was wrong.

At the end of last year I found out my insurance company would no longer pay anything toward the brand of insulin I use.  There would be no co-pay on Apidra.  If I continued to use it, I would pay 100% of the cost.  Later I received the same letter about my Bayer test strips.  I spoke to my endo and he agreed we would appeal.

The test strip fight went well.  My insurance company called me to verify what pump and what meter I use.  I confirmed that I use the Medtronic 530G and the Bayer Contour Next Link.  They talk to each other so my blood sugar number automatically transfers to my pump, reducing the risk of user error when dosing my insulin.  (Meaning I wouldn’t accidentally manually type in the wrong blood sugar number.)  My test strips were approved and my co-pay is the same as it was in 2015.

The insulin fight was another story.  In the end, my endo wrote a new prescription for NovoLog and I said good-bye to my beloved Apidra.  The insulin that has helped me keep my A1C at target levels for eight years.  The insulin I had no interest in ever switching away from.  The insulin I was sure was the best fit for my body.


Or maybe not.  I filled that first reservoir with NovoLog and waited to watch my blood sugars turn to crap.  But they didn’t.  The NovoLog is working just fine.  Sometimes I think it’s working better.  I feel like my overnights are flatter.  Last night I stayed between 116 and 82 for eight hours and woke up with a fasting blood sugar of 99.  I can’t complain about that.


I also feel that I’m having a lot less low blood sugars than I had when using Apidra.  And it isn’t coming at the cost of more highs either.  I do need to admit that Pete and I are working on shedding our many extra pounds, so I’m eating better and moving more.  And I know that is helping to smooth things out.  But I also honestly feel the new insulin is working better for me.  I have to admit I was wrong when I said Apidra was the best fit.

BUT!!!!  And here is the important part . . . . I am still 100% opposed to insurance companies dictating what brand of medications and devices we are able to use.  I believe that decision should rest wholly in the hand of patients and their medical teams.  Which is why I thought long and hard about putting this post out there.  In the end, I feel I was lucky.  I’m lucky that my new insulin works great for me.  I do believe trying new brands might not be a bad idea once and a while, because maybe something out there will work better.  But overall, people with chronic illnesses need to use what ever keeps them the most healthy and fits the best in their lives.  We should not be at the mercy of what our insurance companies dictate.

The Healthcare Experience - #DBlogWeek Day 4

Welcome to day four of Diabetes Blog Week!  I hope you’re having a great time and are ready for our last few days.  So, let’s get to it.

Our topic today is The Healthcare Experience.  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Overall I guess I’d say my healthcare experience isn’t so bad.  I mean, if I compare myself to my husband, whose only issue is some heartburn, then yes, things could be a lot better.  So at the top of my Wish List is not to have a chronic illness and my Biggest Frustration is diabetes.  But when you put that aside, I know my situation is pretty damn good.  I have a great medical team and am able to receive the things I need to stay alive.  But still, I have a few wishes on my list . . . .

Wish List for My Endocrinologist:  Not much on this one.  We respect each other and take on my care as a team.  You never make me feel rushed during my appointments, and yet you are also always on time.  (I never have more than a few minutes to wait once I arrive for my appointment.  Somehow you and the office staff have scheduling down perfectly!)  You explain things thoroughly and also answer each and every question I have.  Although I have to mention, when I saw you two weeks ago and we gave my basal rates and carb ratios an overhaul, we definitely dialed the insulin back too much.  I was stuck in the 200s for days and couldn’t come down until I rage bolused!  It’s okay though, you’ve taught me well and I’ve tweaked things a bit more and have landed somewhere in the middle between the old settings and the new and things are going splendidly.

Wish List for my Optometrist:  Not much here either.  I’m trying to remember how long I’ve been your patient, and it might be about 30 years now, right?  You’ve always made me feel respected.  Back when we discovered some small bleeds in my eye, you found a balance of treating the matter seriously without making me panic more than I should.  We stepped up my monitoring, but as you predicted, things cleared up on their own.  If things should ever start to decline again, I am confident that you will help me get the best care and the best outcome possible.

Wish List for my Insurance Company:  Yeah.  This is the part when I have some major grumbles.  “We’re in this together.”  No, we aren’t.  You make me fight for the number of test strips I need.  You make me fight to keep the meter that communicates with my pump.  You’ve forced me to change my insulin, when I’ve been doing so well on my current brand for eight years.  You leave stupid messages on my voicemail that insinuate I’m an idiot.  Seriously, if I have questions about taking my medications, I’m certainly not going to ask your pharmacist, who doesn’t know me at all.  I have enough common sense to call my doctor, who knows me well and is the one who prescribed the medication in the first place!  And while one-on-one coaching with a health advocate for my chronic condition sounds like a good idea, it was somewhat discouraging when I spent an hour on the phone with her only to hear her say “Wow, you know more than I do.  You could be doing my job.”  You think??  (Although I will dial back my rage a bit and acknowledge that the health coaching is probably very beneficial to many patients who haven’t already received the proper education.  So okay, you get a point for that.)

Wish List for The Healthcare System Overall:  I feel the healthcare system in our country is so freaking broken, I don’t even know where to begin.  All patients need access to the tools they require to stay healthy.  And that access need to come at an affordable cost.  I know I have my grumbles (see above) but I also realized that I am so so blessed and yes, privileged, to have the things I need - even if the costs are very high and the insulin isn’t the best brand for me.  People over 65 should not have to give up devices that are crucial to their care and wellbeing.  People should not be on the brand of device that their insurance company dictates they use, but should be able to use the brand that works best for their personal situation.  Same goes for medication brands.  And mostly, people should not have to choose between buying the things they need to stay alive and healthy or paying their mortgage and putting food on their tables. 

This is just the tip of the iceberg, and I realize my Wish Lists didn’t turn out to be actual lists but are discussions instead.  (Oops)  But there are probably about 100 other posts to be read today, so I’ll end here and pass the torch to other #DBlogWeek participants who have important things to say on this topic . . . .



You can find more posts about The Healthcare Experience on this list.

What is Diabetes Blog Week?  Click here for an explanation and to sign up.  You can also check out the Participant’s List here.

Dear Cigna . . .

I got your letter a while ago.  Quite frankly, I couldn’t deal, so I stuck it in a folder but it’s been nagging at my brain anyway.  I’m getting ready for my endo appointment next week, so I pulled the letter back out.

"Starting January 1, 2016, your Cigna plan won't cover the medications listed below.  This means that if you continue to use any of these medications past January 1, 2016, you'll have to pay the full cost of the medication."

Now I’m sure you have no idea what this means to me, so let me try to explain it to you.  Pretend you’re going to buy a new pair of shoes.  And you are told that shoes now only come in size 5 or size 9.  And your foot?  It is a size 7.  Oh, but don’t worry, it’s all still shoes!  Look at all these people happily walking around in size 5 and size 9 shoes with no problems whatsoever.

Ridiculous, right?  Those happy people clearly have size 5 or size 9 feet.  But you don’t.  Those sizes won’t work for you.  Sure, you can cram your foot in a size 5 and walk around, but soon you’ll be dealing with blisters and bleeding and foot cramps to start, and it will only get worse from there.  Or you can slip right into the size 9 and then trip and fall and lose the shoes.  Neither are an actual solution for your body.

This whole analogy sounds preposterous, right?  That’s because it is.  And so is your letter.  Apidra is my size 7.  Humalog and Novolog are my size 5 and 9.  I’ve tried them.  They are not a solution for my body.

I will fight for my size 7 shoes.

We, The Undersigned - #DBlogWeek Day 2

You can find more We, The Undersigned posts on the Tuesday 5/14 Link List.

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

We, the undersigned People with Diabetes (PWDs) and caregivers and loved ones of PWDs (Type 3s) do herby petition our insurance companies for the following:

• Test Strips, the number the doctor says we need, not the number you think we need.  (I test when I wake up, before and after each meal, and before bed.  If I’m unusually high or low, I need to test a few more times.  That is why my doctor prescribes 10 strips a day, which I then need to fight you for.)
• The freedom to chose our own meters.  (As if fighting for strips wasn’t bad enough, why do you get to dictate which meter I use?  Why is it okay to make me pay a higher co-pay for my strips if I prefer a meter that you don’t consider “preferred”.  I’m the one who had to prick my finger 10 times a day and bleed on a little strip.  It’s not fun.  I should at least get to pick the meter that works best for me.  The strips for the current meter I use and love have a co-pay that is twice as much as the meter you think I should use.  Unfair!!)
• Not to mention, the right to use which ever insulin my doctor and I have determined works best for my body.  (Newsflash - insulin is not “one size fits all”.  I’m a unique person with an individual make up.  What works for someone else might not work for me, and vice versa.  Of course, the insulin that works best for me is another that you deem “non-preferred”.  Diabetes is expensive enough, I resent that you are making it even more expensive for me.)
• The understanding that I might know what I need better than you do.  (You don’t wear my diabetes devices every day, so you probably don’t know what is needed.  For example, you cover my CGM sensors - for which I’m grateful.  But you won’t cover the Tegaderm tape I use with them.  Do you understand that without the tape, each sensor wouldn’t stay put for more than a few hours?  Sensors won’t do me any good if they don’t stay on long enough to give me readings.  Duh.)

There is more I could add, but even if we just started here you would reduce my stress quite a bit.  And you know what, health insurance company?  Stress is not healthy!!

It isn't too late to sign up and join in on Diabetes Blog Week!!  You can find everything you need to know here.

Insurance Company Math . . . .

I had my endo appointment on Friday.  I’m always nervous about what the labs might reveal, and this time I was extra nervous because we were testing my thyroid.  Luckily that came back fine and there was no evidence of any anti-bodies present that would be hell-bent on thyroid destruction, so that auto-immune bullet has been dodged so far.  My other labs came back fine as well.  In a cruel twist of fate, the fact that my A1C was the lowest it’s ever been wasn’t really good news.  It’s getting into the “too low to be safe, you need to stop having readings in the 40s” range so we did some basal tweaks to tighten up my standard deviation.  Not that my deviation is horrible, but a higher A1C with less lows would be better.

One of the things I was most looking forward to at this appointment was getting a new prescription for test strips so I could officially change meters from OneTouch Ultra Link to my new Bayer Contour Next Link.  Yes, I could have called the office at any time for a new prescription, but I’m lazy I wanted to finish up  my 3 month supply of One Touch strips first so I just waited until my appointment.  And it couldn’t have been easier.  Dr. F asked me where I wanted to fill them, and I picked my local pharmacy so I could use my Contour Choice savings card, which can’t be used with my insurance mail order service.  (At least, that’s what I’ve been told.)  Anyway, I picked my pharmacy, Dr. F typed a few things into his laptop, and zingo, the order was ready and waiting for me!  Fast and easy, right?

Right.  Except . . . . when I got home and opened the package, I found I had gotten 2/3s of my test strips and a nice (ha ha ha) note about insurance coverage.


Yes, that is a cat paw in the bottom left corner.  K.C. loves any papers, even stupid insurance denial ones.  Anyway, I had gone through the “you can't have that many strips” - “but I need that many strips” dance less than a year ago.  Apparently my insurance company is having memory problems or something.  So I called them and explained that I had been approved for a larger amount of test strips, and that a new meter brand didn’t change how often I need to test.  The customer service guy was nice, and “fixed” the problem so when I refill the order from now on I’ll get all of the strips I’m supposed to get.  Good . . . . . but what about the other 1/3 of the order for this month?

According to Cigna, I’m just out those strips.  So basically I’ve paid 100% of my co-pay for 67% of my order, and that’s just the way it is.  I can’t think of any other situation where it’s okay to be charged 100% for only 67% of your goods, but I guess I just don’t understand the tricky insurance company math.  Sure, I got A’s in Accounting at a very good business college, but I guess Cigna has a different accounting system that I’m not privy to.

Don’t get me wrong.  I’m thankful to have insurance.  I’m thankful to get some kind of coverage for the supplies I need to stay healthy.  But really, when I feel like I’m being flim-flammed and given the run- around, I can’t help but feel aggravated.  You’ve been there too, right?

Cover Me . . .

(Are you singing 80’s Springsteen with me??)

This month the DSMA Blog Carnival wants us to complete a sentence.  “I wish my insurance company paid for _________because ______________.”  Can I just say EVERYTHING???

But seriously, “everything” is my answer.  I’ve been pretty lucky as health insurance goes.  I have my insulin pump.  My CGM got approved without much hassle.  My first test strip order with my new insurance was denied because I test 8 - 10 times a day and they said that was more than they would cover, but I asked my endo's office to appeal it and within a week all of the test strips I need were delivered to my door.  So yes, it could be worse . . . . but it could also be better.

I wish my insurance company would cover strips for which ever brand meter I’d like to use - instead of just the two brands they’ve decided I can choose from.  While we are at it, I wish they'd also pay for the actual meter because I'm majorly pining for the iBGStar but don't have an extra $80 to shell  out for it.  I wish my insurance company covered all brands of insulin equally - instead of having “preferred” brands with lower copays.  Unfortunately, my body does not “prefer” the brands on the lower copay tier.  Even with coverage, the copays on the stuff I need is ridiculously expensive!

But still, I’m pretty lucky with insurance.  I think of people who can’t get coverage for insulin pumps.  I think of friends who are allowed only one or two test strips a day.  I think of those who go to sleep every night scared stiff of lows, but can’t get coverage for a CGM to keep them safe.  And I think of the struggles people with other illnesses and conditions go through over insurance.

So instead I wish ALL insurance companies paid for EVERYTHING PEOPLE WITH DIABETES (or any health condition) NEED TO LIVE LONG HEALTHY LIVES because WE DESERVE IT.

This post is my May entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/may-dsma-blog-carnival-2/ .

Uncertainty

Today is Pete’s last day of work.  Although he was notified of his lay-off two weeks ago, it still seems a bit unreal.  And scary.  As of today, we are both jobless.  And I’ve never felt so frightened in my life.

Everyone has tough financial times during their life.  (Okay, maybe not EVERYONE, but everyone I know.)  But even when I’ve had to keep a close eye on my budget, I’ve never worried about my diabetes supplies and my insurance.  I’ve been very lucky and I always knew I could get what I need to stay alive and healthy.  Now the tide has changed.  It feels a bit like my luck has run out.  Although we will keep our insurance until the end of March, I’ve already begun to ration supplies.  I’m wearing my pump sites one day longer.  I’m stretching my sensors as long as I can.  I’m trying to save now, because if we need to go on COBRA in April, the premium will cost a fortune.

I’m also worried about the coverage we will get once we find jobs and have a new insurance to deal with.  Will I still be able to see my awesome endo?  Will my CGM be covered?  Will I get as many test strips as I need?  Or will I have to fight for coverage on my supplies?  And what will our new co-pays be like?

I know I’m not the first one who has been in the situation.  I know Pete and I will get through this.  I know it will all work out . . .  somehow.

But for now, I feel like I’m adrift on a sea of uncertainty . . . waiting to see when the tide will come in and where it will take me. And that is a very scary place to be.

Insulin Pumps and Type 2s

This morning I went up to the hospital to visit my Uncle Joe.  Uncle Joe is my father’s twin, my godfather, and a Type 2 diabetic.  He spent his 70th birthday in the hospital, where he’s been for over a week.  He’s in ICU and has been quite sick, but luckily he’s getting better and stronger every day.

As far as I know, the reasons Uncle Joe is in the hospital right now are not diabetes related, although they are still running various tests to determine what is going on.   But naturally, diabetes usually comes up in our conversations.  This morning he asked about my pump - how I like it and how it works.  I know he has a hard time with diabetes.  A few months ago he had a really bad low and was taken to the hospital by ambulance.  He was switched from oral meds to insulin years ago.  He seemed genuinely fascinated as I explained my pump and he asked to see how it connected to me.   As I showed him the infusion site on my leg and explained how I change it every three days, he asked “Could I get an insulin pump?”

I told him I thought he could if his doctor prescribed one for him.  I do think it might help him.  I know he struggles with both high and low blood sugars, and his A1C is never where he and his doctor would like it to be.  But alarm bells went off in my head when I thought about insurance.  He has great insurance, but I honestly have no idea if it is difficult for a Type 2 to get approval for an insulin pump.  So I’m reaching out for advice and information.  Who better to ask than the DOC?  Does anyone have any information I can pass along to Uncle Joe?

Qualifying . . .

When I wrote yesterdays post, I was so excited about starting the CGMS process that I forgot to mention the requirements I need to meet for my insurance to consider a CGM medically neccessary.  I have Anthem Blue Cross, and here's what they want to see.

• I must be a Type 1 diabetic, and therefore insulin dependent.  CHECK
  
• I must test my blood a minimum of 4 times per day.  CHECK, usually before noon!
• I must have a month-long blood sugar log that shows numbers below 50.  CHECK, including some nasty ones in the 30's and that scary 27 at the beginning of last month.
• My endo must write a prescription.  CHECK.

So hopefully, it will be smooth sailing.  I'm afraid to get too excited though, because I feel like you never know what the insurance company will say.

I also have to admit that it irks me that they don't care about high blood sugar readings, only the lows.  As if the highs are no problem.  It's those highs that lead to costly long-term complications, so shouldn't I need to show them readings over 250 too? 

REQUEST FOR CGMS: DENIED BY INSURANCE

As I mentioned in my last post, Gina has had the wonderful idea that we all raise our voices today and let the insurance companies know how much we need them to approve requests for CGMs.


I've been on my pump for about 2 1/2 months. Before I took the plunge, I couldn't see how the "new" pump technology could really help me any more than taking injections. After all, both have the same end result - getting insulin into my body. Now, as a pumper, I can attest to how much better this little piece of technology is. My blood sugars have never been better (although I hate to say that for fear of jinxing myself and ending up with a boat-load of highs - I think it will take a while before I get more confident that control this good can last). Pumping has also made my life much easier in ways I never could have imagined.

So what does that have to do with Continuous Glucose Monitors? Well, like the pump, in the not so distant past I had no desire to try a CGMS. I figured why mess with what I know - finger sticks? How could a CGMS be any better, especially since the technology is new and all the kinks have not been worked out yet?

Well, my views on CGM have changed in the last 2 1/2 months as well. I can see how, even if right now they are not always 100% accurate, a CGM can help control immensely. They help spot trends and pinpoint times of the day when a basal tweak may be necessary. They work hard in the over-night hours, when I'd be asleep and less likely to catch a low - ready to sound the alarm if my blood sugar starts to crash. I am sure a CGMS would make my life easier in ways I could never have imagined - just like my pump. So I am very upset to know that if my doctor agrees with me that I am ready to start on one, chances are good the the insurance company will jinx it.

I have had an important point ingrained into me over and over - the most important thing a diabetic can do to stay healthy is to check blood sugar often and keep it under control. This is the best way to fend off complications and live a long and healthy life. Yes, the cost of a CGMS is not small - but the insurance companies need to understand that the costs are much smaller than the cost of managing and treating diabetes complications. And on a personal level. the costs are nothing compared to the improved quality of life a CGMS can bring me.

I did not ask for this disease. It's something I was dealt, and I live with it every day and work constantly to manage it the best I can.

I did not ask for this disease. But you can bet I'm ready to ask for anything that will help me manage it. Don't deny me that right.

REQUEST FOR CGMS: DENIED BY INSURANCE

Gina over at Diabetes Talkfest has declared July 1st as Continuous Glucose Monitor System Denial Day. I personally have not been denied the CGMS . . . . but that is partly because I haven't tried to get coverage for one yet. The way things seem to be going, once my doctor and I decide I am ready to use one, chances are very good the insurance company will say it's a no go.

This is completely unacceptable! Let's raise our voices against the frustration of being denied this new technology which can be crucial in helping us avoid complications! Join us on July 1st when we send a message to the insurance companies!



To learn how to get your voice heard, go here.