UPDATE: Part of my terror about this insulin coverage change was the fact that I wasn't sure if I would be eligible for unemployment insurance. I applied for unemployment and they asked me to fill out a seven-page form asking all kinds of questions in order to determine if I was eligible. I've been waiting, waiting, waiting on pins and needles to see if I would have any income, or be forced to start eating through my retirement savings (and paying a huge penalty for too-early withdrawal.) Well HALLELUIA, I just looked at my bank account and the state has started depositing unemployment insurance money into my account. This is a HUGE relief and will help me buy time on the insulin until I find another job and, hopefully, get better insurance coverage of medications.
I still hate Group Health, though, for what they are doing to diabetics. People shouldn't have to choose between insulin and a roof over their heads. Our whole medical system in the U.S. becomes more vicious and insanely cruel to sick people every day.
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Hi folks. I haven't been around here in quite a while (long story.)
Today I had heart-shattering news: my insulin, which used to cost me a co-pay of $30-ish dollars has been kicked up to over $300 dollars. This is TEN TIMES more expensive than it used to be. I swear they've declared war on diabetics at Group Health Cooperative -- they want us to die so they don't have to cover us anymore (yes, I know I sound hysterical -- because I am hysterical.)
The only insulin left in their generic formulary are Novalin NPH and Novalin R. I've never taken either insulin. I have no idea how to dose them, how they're different, what to expect, how to switch over.
No one gave me any advance notice. I have 1-1/2 pens left of Novolog and 2 pens left of Lantus...and then that's it. I found all this out just this morning, when I went to refill my prescriptions. It was like being hit in the head with a rock when they quoted the price.
I have no idea what to do. My doctors have been utterly useless. I learned everything I know about managing insulin from talking to people like you on-line (you are all my angels) and from reading books like "How to Think Like a Pancreas". But I've been using Lantus and Novolog, so all my knowledge about how, when, how much, why...I feel like it's all been NUKED and I'm freaking out. I can't afford a ten-fold increase in the cost of my insulin. I'm unemployed right now and kind of hanging on by my fingernails.
I want to just stop injecting insulin, put a protest sign around my neck, and sit outside GHC's corporate offices until I go into DKA. If anyone has a better idea (!!!) I'd love to hear it.
Thanks and sorry for being so upset. I'm just freaking out.
Permalink Reply by LaGuitariste on January 30, 2012 at 5:37pm Hi Lisa S. If you'd read down the thread, you'd see that I spent two hours on the phone with them today. It's an HMO and they can do whatever they want to us -- we have no rights. They make the rules and we get it in the teeth. They just took my normal insulin cost and multiplied it by TEN and there is not a damn thing I can do about it. I can't switch insurance (pre-existing conditions) and I can't pay the ten-fold increase in the cost (unemployed.) That's why I wrote this post in the first place. This is America, where insurance companies have ALL the power and if you're poor and sick, you're dirt under their heels.
If they wont budge on it and you cant pay for even one order a month (instead of maybe a three month supply) do call the insulin companies and ask for special assistance. Being unemployed is stressful enough, but will only add to your case with the companies.
I was very much allergic to Humalog, and the Novolog folks put me on a special program prior to them approving the product here in the US.
I'm just about positive that they still have those types of programs.
You have to have your insulin to survive, and most of us have a brand we really really need to be using. Some can use Humalog or Novolog, I for one cant and if my HMO ever drops Novolog I'll be seeking assistance too.
Try to find a nurse, CDE or even the local ADA to help you.
Dont give up! I'm still wondering why they only want to give benefits on those two archaic insulins.
No one hardly ever uses those anymore.
Oh, and have you checked into using syringes not pens?
Permalink Reply by LaGuitariste on January 30, 2012 at 9:52pm Hi Laura S.
Thanks for the ideas. I did some research and apparently none of the Patient Assistance Programs will help as I have insurance coverage for medication. The fact that my copays are suddenly utterly unaffordable -- hundreds of dollars that I don't have -- doesn't matter. As I have my own private insurance -- which already costs me hundreds per month -- no dice on getting help from the manufacturer.
Well, that makes sense. Around here you cant get affordable low cost health insurance if you already have health insurance (even if you cant afford it any longer).
I wish you could find a good CDE office (you might look on their national web site). Sometimes they have a way to assist. And I would still hound the doctor for help. Sometimes we have to educate them. Last resort, R isnt the worst thing in the world. It can be used.
You may want to get to the appeals committee at the HMO.
My husband was on a very expensive drug, and went before the committee to get it paid for on a lower copay. They did it. He had to appear for lack of better word, at a hearing by phone. Stated his case, and won.
One thing I am surprised at....my HMO is forever hounding patients about meds etc. Are you having your feet/eyes/etc etc checked on schedule? They dont want to be paying for unhealthy diabetics.
A case manager nurse took up my cause, and though she drove me insane she did accomplish things for me.
I hope you wont give up.
Enlist everyone you can possibly think of to help you. And do price the insulin in single vial purchases with syringes, rather than pre-filled pens. What would that run you? Would it last a month?
Syringes can be reused a time or two.
Permalink Reply by LaGuitariste on January 30, 2012 at 5:59pm There is no tier exception. I was on the phone with customer service for hours, working my way up the food chain (supervisors, etc.) They had nothing to offer me but platitudes.
Permalink Reply by MossDog on January 30, 2012 at 6:28pm Sorry to hear about the troubles. I was just reading GH's formulary. It states Lantus or Levemir requires a prior authorization. I imagine these have to be done every year. It does state in the formulary explanation that each persons benefit would vary. I would suggest asking the Doc's office to get a Prior Auth to see what that will come up with.
I know you have said you spent a bunch of time on the phone with them. I have found when calling into the insurance/pharmacy places that 50% of the people I talk to do not know half of what they speak of so be calm and keep trying.
Although NPH and Regular are not exactly what I would WANT if you apply the same principles you used to figure out Lantus and Novolog you should be able to at least keep a lid on things until your situation improves. Good Luck!
Permalink Reply by LaGuitariste on January 30, 2012 at 6:42pm Hi Moss Dog, thanks for your reply. I already went through the whole "prior authorization" thing to get Lantus -- several years ago. Now they've just jacked the price up into the stratosphere for my plan overnight with no warning. It's TEN TIMES more expensive. That's Group Health's idea of "coverage".
I have no idea even where to start with NPH and R. They might as well be artifacts from the moon. I hate to be so stupid, but it took me MONTHS with no help from anyone at Group Health -- through laborious trial and error -- to figure out what to do with Lantus and Novolog. To start over with different insulins -- with different doses, different onsets, different peaks, different effective periods...it will probable take me months to figure it all out again.
I honestly don't know if I even want to try. I have to think about that.
Permalink Reply by MossDog on January 30, 2012 at 6:52pm Of course you are going to try! If you can't afford anything else you don't have much of a choice!! JeanV you always have the option to apply yourself even if it IS a terrible situation (which I agree it IS).
I am fairly familiar with all of them. If you decide to go forward on NPH and Regular I would be happy to provide some conversion details. But you are right......It will take some figuring out regardless. But you already have the knowledge- it will just take some tweaking. For YOU this could turn out to be a good move. Who knows? Maybe that is wishful thinking. It seems like the only thing that will help this situation is the best attitude you can muster and a bit of elbow grease or perhaps a winning lottery ticket.
Permalink Reply by LaGuitariste on January 30, 2012 at 7:06pm Thanks for your offer. You are very kind. Maybe I'll take you up on it after I calm down. I know I should have a better attitude, but I can't stop feeling the way I feel. Maybe with time.
I keep 'hearing' an endless loop-tape in my stupid head: "I was doing so well. I worked so hard. And now this... But I was doing so well. I worked so hard. I finally had it figured out. And now this..."
I can't bear it. I couldn't eat today. I kept looking at my insulin pens and thinking, "That's it. When it's gone it's gone..."
I e-mailed my UTTERLY USELESS doctor this afternoon. Maybe a miracle will happen and she'll actually have something helpful to suggest.
I am looking at an Italian aphorism I have pinned up above my desk: "Not every ill comes to destroy you." We'll see.
Glad to see you posting here again! (Even if it is for such an unfortunate reason.)
Can your doctor help you out at all? Either by writing a letter on your behalf or at the very least helping you figure out a dose and schedule if you DO have to go on regular and NPH?
Permalink Reply by LaGuitariste on January 30, 2012 at 7:24pm Hi Jen, how are you? I wish my doctor could be of use. She is utterly clueless about diabetes. She refers out anyone who needs more than metformin. I'd be better off getting a seven-year-old type I to help me -- no joke.
I'll have to spend $50 per visit with a "specialist" (really just an internist who is also useless) and the "specialist" will try to put me back on a Neanderthal-era "sliding scale". Her eyes will glaze over if I say "correction factor" or "CGM" -- any innovation in diabetic care that has come up in the past twenty-odd years is foreign to these people.
Diabetic care at Group Health Coop is super scary. These are the folks who had never heard of delayed-onset post-exercise hypoglycemia. One of them actually suggested to me that I crashed from 136 down to 36 in twenty minutes (still fasting in the morning, just sitting at my home-office desk) because of a DIET soda I had consumed the night before.
I try not to rag on them -- but I've already been down this road with them once before. To have to go down it again, from scratch, with all-different insulins, and zero help...it's breaking my spirt. I'm like an old nag just lying down in her traces, refusing to go one more step.
Manny Hernandez(Co-Founder, Editor, has LADA)
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