Help? My insurance dumped Lantus and Novolog out of its formulary!

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.


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.

Jean, it is good to hear from you. I'm sorry to hear this. Have you really found that your coverage has changed or are you caught paying up your deductible? Most insurance plans like GHC have a tiering. While you might get the best co-pay on generics, generally you still get coverage on branded drugs. Are you really sure you don't have any coverage? I understand your frustration and would really like to help you through this.

I agree with bsc, I'd really double check just to make sure this isnt' some kind of deductible that you have to meet. A lot of insurances have deductibles that start over at the first of the year, and once the deductible is met, then they cover at whatever percentage they are contracted to cover at. At that point then you'd pay at whatever teir lantus and Novalog are set at. Before panicing call your insurance company and ask them to explain what is going on. A deductible sucks, but better a deductible then everytime u have to get it filled.

Hi Jean. Good to have you posting again; so sorry about the insulin cost. Perhaps if your doctor wrote the insurance people that your health required Lantus and Novolog they would make an exception. Letters from doctors can work wonders.

As for amounts. It will take some experimentation, but firstly, I'd start with the same total amounts as you are now taking. The Regular needs to be taken awhile before eating, and since it doesn't handle spikes well (in my experience), low carbs are best. As for the NPH, I find it works best with three shots. It will have some peaks, so timing the nightly shot to take care of the dawn phenomenon is good; pay attention to when the other two peaks will occur so you can a meal or snack at the time. Best luck and again, welcome back.

Have you looked into apedria and humalog, or levimier? They might still be covered.

Read my messages to Marie today. I had 7 medications to fill all had regills my insurance refused all I must have a Generic. I tried to tell them some of my medications do not have Generics. Use something similar they say. I,too,use Lantus and Novolog...I am going to fight again tomorrow. If something is working and keeping you well why make a change.Never ever had this problem until the town where I was Principal ignored the 4 unions and put all employees and retirees in the state plan. As I live out of state now I was put in UNICARE as of 1/1/12 and my troubles began. I hope you can work something out. At the golden (but tarnished) age of 84 I do not need this. Good Luck. Reed

Hi there and thanks bsc. No, it's not a deductible situation. I spent two hours on the phone with the pharmacy and with customer service. They used to have Novolog and Lantus in their basic formulary. Now they've moved both into a different tier and the cost for me has gone from a $15 co-pay for each up to 40% of each -- for me, at my high doses, that means what used to cost $30 will now cost over $300 - a permanent 10-fold increase.

Hi Matthew -- no, the only two that are left in their basic formulary (where I would only have to pay a $15 co-pay) are Novalin R and Novalin NPH. That's it.

I'm so sorry, Seagator. I sometimes think that their strategy is just to kill us off so they don't have to cover us anymore. I hate to say that, but that's how I feel right now -- like I'm in the cross-hairs of a heartless, cruel sniper who is just getting ready to pull the trigger and finish me off.

Thanks for your kind reply, Trudy. Three shots? Just thinking of it make me physically ill. I'm terrible at keeping track of time and counting and measuring things -- and of course, that's what being a diabetic is ALL about: keeping track of time and counting and measuring things. I can't bear it. They won't let me pump. They won't let me have CGM. Now they won't let me have the insulin I've been using for years. I'm drowning here. What are they going to do to me next? I've been doing so well -- eating better than I have in a long time, working my butt off to get my basal and correction factor and boluses all figured out. Now I get this two-by-four to the head? That's my reward? Jesus wept.

First of all, if your doctor says you must have your insulin, they usually can get an authorization for that.
Perhaps that is that much higher copay.......
Also you can often participate in a program from the insulin company for people with no coverage. They used to call it their compassionate use program.
I cant imagine an insurance company not covering Humalog or Novolog. Most of us are using at least one of those two nowadays. They should be on the middel tier, since they are not necessarily generic. They should not be on the highest tier, unless your insurance only has two tiers.

You need to make some calls, do some footwork and have a doctor or CDE assist you.

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.

Hi again Jean, you could try two shots with the NPH. When I first went on insulin, only R and NPH were available, and remembering the timing was really hard. I finally got a watch with three alarms on it, which worked reasonably well. I'm not going to say that R and NPH are as good as Novolog and Lantus -- they're not -- but they'll keep you going until you find a way for the insurance company to give you an exception. I have to take my Levemir three times a day now (I'm on MDI most of the time), and I've finally just learned the times -- first thing in the morning, last thing at night and 2:30 PM. When I forget, I get a problem which serves to remind me the next day! We have to just keep learning and working. What you've already learned re your basal and correction factor and boluses will all serve to help you make any transitions necessary; unfortunately everything always keeps changing anyway, as you undoubtedly already know. My best wishes, and yes! you can do it.

Apply for a tier exception, you can prevail!

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.

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?

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!

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 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.

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.

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.