David (us) vs Goliath (Insurers): A battle I want over for good.

A request: Once you are done reading today I’d like you to share one of two things: an insurance fight you’ve won or lost, or: how and when you transitioned to handling your own insurance battles. Thanks!

My young-adult daughter’s endo had just suggested she enroll in a one-week diabetes “refresher course” late this summer. Said daughter was calling it “diabetes rehab” and crooning about it ala Amy Winehouse (“They told me to go to diabetes rehab and I said: ohhhhhh, ohhhhhh, lowwwwws!”). I, on the other hand, was on the phone with insurance. Fighting and explaining. Again.

And it got me thinking: Exactly how many hours do we folks in this Type 1 world spend on the phone going over and over and over things that seemingly should just be covered already? And if I took all the hours I’ve spent on insurance phone calls over the past 14 years and applied them to some sort of other effort, what could I be? An Olympic gymnast, maybe. The single-handed constructor of all the huts they need in Honduras. Or better yet: not stressed out. And: when exactly do I transfer this complicated effort over to my child? Because right now it seems like there is no way she can handle all this on her own.

Why must our insurance conversations and requests feel like this?

In this case, I called our insurance company and explained the program and the reason my daughter’s endo felt strongly it was time for her to take part in something like this. And this is what I got for an answer: We don’t cover any diabetes educational costs other than at diagnosis.

Say what? Type 1 diabetes is a fluid disease. By that I don’t mean it changes every few years: it changes with the tides, and sometimes more often. Battling Type 1 involves a certain kind of prowess you might find in, say, fencing. You bob, you weave, you come up with a tricky attack plan and somehow, diabetes puts you on the ropes again and again. So the idea of only educating a person at diagnosis seems beyond nuts to me. And the idea of re-educating a person at different stages of their lives seems to just make sense. Heck, aren’t we supposed to be moving toward preventative health in our nation?

The woman on the phone was nice enough, but explained my argument could go nowhere. It was the policy chosen by the huge employer my family got insurance through. I hung up the phone frustrated.

And then decided to shoot the moon. I dropped an email to the Human Resource Director, who in fairness has tens of thousands of employees to worry about. I explained my issue briefly and asked for some phone time. She called me right away.

I was patient with my attack. I did my basic “What is Type 1 diabetes; how is it different than Type 2 diabetes and why it requires the constant attention it does.” Then I went into the specifics of this point of my daughter’s life (14 years with Type 1; a completely changed body since childhood; a new medical team as a young adult and the beginning to stepping into her own life with diabetes) and why some education would be good now. I pointed out other times it might be as well: when deciding to have children. After having children. Shifting into the middle of life. And so on. I think I said something like, “Trust me, this is not something we are trying to get because it’s ‘cool.’ If you think my daughter wants to spend a week of her summer inside a hospital getting educated about diabetes, you are wrong. Nothing fun about this at all. Trust me.”

I finished my plea and took a deep breath; expecting to be on those ropes again and getting my mind ready to come up with some tricky foot work (make that wordswork). And a funny thing happened:

The HR Director agreed. “You know,” she said, “I really appreciate you explaining this to me. It just makes sense. We are all about healthy living and to me, this kind of education seems like something we absolutely should cover. I’m going to put in a policy change. In the meantime, if you have any trouble with coverage, let me know and I’ll make sure this is covered for your daughter until that policy change goes through.”

Wow. I called my husband immediately with the good news. He said, “Looks like you won this time! Wait . . . have you ever lost?”

And I may not have, but that’s beside the point. This kind of fighting is ridiculous and wrong, even if I did come out on top. Whenever I have to take on these things (like the time she was little and the insurance company was trying to tell me we need less infusion sites. I won over with this line: “Honey, trust me: we are not putting these in birthday party loot bags!”) it takes up my time and energy and it chips away at my heart. I have to think each time: what about the people who are not able to fight, for whatever reason. Do they just go without the basics they need to not just thrive but simply get by with diabetes? And again: when will my daughter do this on her own? How will she do it on her own?

Trust me, insurance powers that be, we are not filling these up with test strips and infusion sets.Why must insurance discussions feel like this?

I’m not one for socialized medicine. But what would life be like if some of the needs of people with Type 1 diabetes was better understood by employers and insurers? How much less would the cost of diabetes on society be if everyone with Type 1 got all the coverage they need – be it for infusion sites, education, enough test strips or a variety of insulins? (And how about covering not just insulin pens but the needles that go on top to get the insulin out and into your body? I’m still scratching my head at that one). How much happier and less stressed would people with Type 1 and the people who love and care for them be if coverage was simpler? I’m guessing there are some mental health savings there as well.

I know it’s a lot to expect. But imagine if we all had, going forward, all that time to do something else instead? Quite possibly, we could save the world.

Here’s hoping for it.

A request: Today I’d like you to share one of two things: an insurance fight you’ve won or lost, or: how and when you transitioned to handling your own insurance battles. Thanks!

7 thoughts on “David (us) vs Goliath (Insurers): A battle I want over for good.

  1. I have a story of when I fought my medical group and won…

    A few years back I wanted to switch to the new Animas Ping from my old OLD Animas (think: original!!) pump. To prime the story (lol), I had previously had an argument with the Medical Group regarding my test strips: I would have to pay EXORBITANTLY to continue using my Freestyle machine (jerks), or could switch to OneTouch for free, no copay. So here I am trying to get me Animas Ping pump, and they stop me to say that they don’t have a contract with Animas, but they have one with Cosmo! Now, just in case people are unfamiliar with it, the Cosmo is directly connected to a FREESTYLE machine!! So I quickly laid down the line – they’re telling me to get the Cosmo, that they themselves told me would be exorbitantly expensive for the test strips, and yet the Animas Ping uses OneTouch, who they DO have a contract with! Within a few hours, I got a call back from them saying that I’d be approved for the Animas pump. That’s what I thought 😀

      1. Thanks Moira! I will say that insurance companies are the bane of my life (UGH), BUT I have found, as I’m sure you have, that as long as you are the proverbial squeaky wheel and nicely make their life hell, in a calm, well-informed, and very strong manner… I normally get my way. *knocks on wood*

  2. I have SO many of these stories. I just recently wrote about this, http://laurendazzle.blogspot.com/2011/06/joys-of-insurance.html

    Overall, I had to fight really hard for my CGM and any new medications I wanted to try. I won that battle. But I have lost as well. I was forced to switch from apidra to humalog, which to be honest, I haven’t noticed any big difference. But none the less, I feel I should be able to have whatever insulin I want. Ugh. I hate insurance companies.

  3. Mind you this was 22 years ago…

    My 6 year old had been home a week following diagnosis when I learned our insurance would pay for his meter but not the strips. No amount of reasonable dialog would sway the customer service reps nor their supervisors so I resorted to my Southern form of coercion. I called the pediatrician and the endo and requested written Rx’s and letters explaining the need for the number of blood tests they were requiring of us. Then during lunch, I walked into the business office of the hospital where I worked (I was an OB nurse at the time) and asked for a letter indicating the cost of a STAT blood glucose ($128.00, double the usual $64.00 cost since we wanted IMMEDIATE results). I then gathered all my papers together and mailed them with my letter asking the insurance company what they would like me to do – send them the bills for the strips that at the time cost about 50 cents each or the bills from the hospital for the minimum 4 tests/day. I assured them I didn’t mind taking him the 6 blocks we lived from the hospital since I worked there and had been promised special treatment by my friends in the lab. About a week later I got a phone call from some idiot (I mean a CS supervisor) asking me just how long my son was “going to have this problem”. My mother tells me she didn’t send me to Catholic school for 12 years to learn some of the words I used that day but I really do hope they taped that call for “training purposes”. A week later I got a letter from the president of the company that copied the VP of claims. It read: “Pay for the strips”.

  4. Like Lauren, I have a few. Here’s a sampling:
    1) insulin covered; syringes not covered
    2) c-peptide test required to determine eligibility for insulin pump (presence of c-peptide means insulin is being produced; I had had type 1 diabetes for 28 years at the time). I was told: this is a fasting blood test. Almost died laughing (and almost had a hot fudge sundae beforehand, just to show them).
    3) had a patient who was also an employee at the hospital where I worked. Turned out our (self-insured) employer did not cover diabetes education – got that rule changed!!

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