Diabetes and Healthcare

I was watching the news recently and saw a story about people who have to make critical life and death decisions because of unreasonable healthcare policies.  It  was inhumane, seeing that many individuals have to choose to either not eat or not give themselves as much insulin as they require so as to extend the life of the medication to get them to their next refill.  The fact that an insurance company would make the decision to cover only a certain amount of medication and not what the doctor prescribes is unconscionable.

I recently received a letter from my insurance company that as of January 1, 2018, my Novolog insulin was no longer being covered and that I would now need to take Humalog.  I’m sorry, what?  I now need to take Humalog?  Would you believe that not one person on the board that made that call was an endocrinologist, you know, someone who knows a thing or two about diabetes?  Of course you would believe it, because that is the world we are living in.  If there was just one expert who was part of making that decision, he could have said, um, guys, you know that Novolog and Humalog are not interchangeable, right?  Sure, they are both fast-acting insulins, but interchangeable, no.  I called my insurance company and they told me I would have to try Humalog, but if it didn’t work, I would need a letter of medical necessity stating the need for Novolog.  Great, that was easy.  “So, Novolog will be covered then if it is deemed medically necessary?” I asked.  I was told that it would indeed be covered, at a cost.  Because Humalog is the one on the insurance formulary, I would need to pay a much higher co-pay for the brand that my body requires to stay alive.  Well isn’t that just slap your momma fantastic!

How did insurance companies get this kind of power?  When did doctors lose their voices in deciding what THEIR patients’ needs are?  I never, ever considered myself someone who could rally and fight for things.  I always quietly stayed in the shadows, waiting for things to be done.  Guess what happens when you wait for things to get done?  Anyone? Bueller? Ok then, here it is.  Things don’t get done.  When I saw that story about those who actually had to choose between food and insulin, something happened to me.  Some deeply hidden fire was lit inside me.  Some people can’t fight for themselves, so we need to come together to fight for them.

I am excited to be attending my first JDRF TypeOne Nation Summit in Pittsburgh next month.  I am hoping to widen my network of diabetes experts to learn what I can be doing to lend my voice to this important cause.  If you or a loved one has T1D, please share your stories of how you have suffered at the hands of greedy insurance companies.  I would like to compile these stories, our stories, to fight for the gross injustice of these money hungry giants!

Injections to Pump

After diagnosis, I started taking a minimum of two injections per day.  During every visit to my endocrinologist, our conversation went something like this:

her: ready for a pump yet?

me: no.

her: have you given it any thought?

me: yes.

her:  what are your thoughts?

me: that I don’t want one.

It went like that for about 18 years!  I don’t like change, and I just wasn’t ready.  I can’t even say why I wasn’t ready, maybe because I had my own ideas, right or wrong, of what it would be like to have a pump.  It just seemed so permanent to me.  To have something attached to my body at all times just didn’t appeal to me, so I put her off for as long as I could.  My A1C’s were always somewhere in the stratosphere, ranging between 9 and 11!  When you are young with diabetes, you feel like complications will never happen to you because you are invincible.  I guess even young people without diabetes feel that way 😉

When I was first diagnosed (see post titled After Diagnosis), my diet was very strict.  I followed every rule, went to every appointment, joined a support group, and tried my best to be a good diabetic and a normal kid. I was 12 at that time, so I was just coming up on being a teenager, going to high school, and the dreaded teenage rebellion.  It didn’t take long once I got to high school to tell myself, “Screw you diabetes, I’m not going to follow your stupid rules anymore.”

I started sneaking sugar at school during lunch (big chocolate chip cookie for 40 cents, anyone?).  I was rigging my glucometer to show a lower blood sugar than what it was (you could do that in 1988) so my mom wouldn’t know I was cheating.  I did everything a diabetic should not do, and I did those things for a very long time.   All the years of nothing is going to happen to me finally caught up.  I was at work one day, bent over to reach some files from a bottom drawer.  I  looked up and saw a wave of red covering my right eye.  My blood vessels were leaking blood into the back of my retinas, and a trip to the ophthalmologist confirmed that I had severe retinopathy in both eyes.  In fact, my doctor told me he had never seen such progression of the disease in someone so young.  I was 27.

Each of my eyes now has around 1000 laser burns from several PRP surgeries (panretinal photocoagulation).   I thought it was about time to finally start taking care myself.  And,  I knew that one day soon I wanted to have kids. I knew it was very risky, but I really wanted to have a baby on my own. Maybe I had something to prove to myself,  like the fact that I finally started putting myself first instead of living in denial that I had a disease that required meticulous care and knowledge. I spent too many years letting diabetes rule my life thinking I was the one in charge, but the fact was, diabetes was kicking my butt, and I wanted my life back.

My endocrinologist would always tell me that once I got a pump, I could never imagine my life without one. I thought this was hilarious, because I was so far from feeling like that could ever be true. It only took about a week after starting the pump for me to call her and say that she was right. I could hear her grinning through the phone, and I’m not going to say that she didn’t gloat just a little 🙂

Life with a pump, wow! My A1C’s  were now in the 5’s and 6’s, and my sugar was more tightly controlled than ever before. I can’t say the transition was simple, like anything it takes time, patience, and a ton of practice, but just running on regular insulin all day rather than a shot of NPH plus regular  multiple times a day was unbelievable. My mom used to call taking injections “a shot in the dark,” pun intended, but that’s exactly what it was. It was taking a shot in the morning hoping that the long-acting insulin would kick in exactly when you needed it to  and was based on eating on a very strict schedule. Being on an insulin pump, you take a base rate that runs 24 hours a day, and then you take insulin when your blood sugar is high and when you eat, it’s all in your control, and so is your schedule.  It was freeing, and after really getting the hang of it, I started to feel more normal than I had in years!  I was so mad at myself for having waited so long, and it never entered my mind that I had something attached to me all the time. It just became part of me, and now I feel bare without it.

If you are thinking about getting an insulin pump and have any doubts or questions, I am happy to talk with you. Please go to my contact page and send me a message. I will do my best to get back to you within 48 hours.