This week, Wil's discussing the always (and ever-more) frustrating issue of insurance coverage limiting the diabetes meds and supplies we can use...
Kimberly, type 1 from Connecticut, writes: How do I go about convincing Medicaid to let me keep my Lantus Solostar pens, rather than go to syringe and vial?? The neuropathy in my hands, and what I suspect is some carpal tunnel, make it very difficult to use a syringe and vial. Lantus pens work really well for me and they are easy to use and fast. Why does this have to be such a big deal?? My other insulin is a Humalog pen, so why must I switch over for the Lantus? This is so frustrating... ARGH!! Would it benefit me to contact Sanofi directly and ask them? Any suggestions on how to bargain with Medicaid? It's not like I'm going from brand name to generic; it's a completely different delivery method! I'd appreciate any suggestions you might have. Thank you.
Wil@Ask D'Mine answers: If your state is like most, then the problem lies not with Medicaid in Washington (the so-called 800-Pound Gorilla in healthcare policy), but with your MCO. A moco, not to be confused with the Spanish word for "snot," is a Managed Care Organization. They're the ones who manage Medicaid programs on the ground for the feds and the states. Most states have several different MCOs "competing." Historically, these were the greedy bastards who profited by milking the system while avoiding the whole "provide care" thing. Now with Obamacare changing the landscape, they may prove to be your best friend going forward: Now the only way they can make money is to keep you healthy.
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Of course, having never done that before in the USA, no one in insurance knows how.
Anyway, I just wanted to be clear that it's the insurance company that manages your Medicaid for you in your state that you need to convince, not Medicaid itself. And in your case, it might not be all that hard. But before I get there, just for everyone else, I want to explain why an insurance company would want to force you to use a syringe and vial instead of the global standard of a pen.
Well, pennies, really.
Unit-per-unit, at most monthly doses, lifejuice in a vial is marginally cheaper than lifejuice in a pen. And when you consider how many millions of people are on this lifejuice (insulin of course), those pennies can really add up to a handsome profit. I wouldn't mind having a penny for every insulin shot taken in this country every day. I could retire and write trashy fiction from a nudie bar, which has always been my life's ambition.
Now, know that it's the on-the-ground MCOs that create the local formulary -- a list of covered and preferred medications and supplies -- in each state, and the various MCOs in each state may have different formularies. For those of us who run on the cynical side, there's always suspicions that the choices are not medically driven, but are due to kickbacks. The actual truth is not far off, as Big Pharma "negotiates" with each MCO in heated competitive bidding to have their product be the "preferred" drug in each category.
That said, the choice of pen over vial is more likely made by the MCO. I have a hard time seeing why Sanofi or Novo would offer an MCO a better rate for vials than pens. All of this is a long-winded way of saying that I don't think that calling Sanofi will be much help, nor is calling on Washington (more on that in a bit). The decision, and the ability to override it, is made close to home, and the way to get it changed is to go through your doctor.
You need to have your doc write a letter of medical necessity stating why you should be granted an exception to the formulary. In your case, there are good clinical reasons why you need a pen. With neuropathy and carpal, it's hard for you to use a syringe. If it's hard, you probably won't do it all the time. If you don't do it all the time, you'll die -- slowly and EXPENSIVELY.
That should do the trick. Of the pen-unfriendly MCOs, and not all are opposed to pens in the first place, most will give pens to patients with hand or eye trouble that make using syringes unpractical. If the letter from your doc fails, have him or her appeal, and if necessarily, take it to your state's Corporation Commission. MCOs hate the states sniffing around in their business. And if all of that fails, change MCOs as soon as you are eligible to. In my state, one of the MCOs is jerky about pens, but the other two are fine with them.
Now, where pen-unfriendly MCOs don't give an inch is in the other well-documented reason for using a pen: It improves lifestyle satisfaction. You being happier vs. a few more pennies in their pocket? That won't end well for you. And for what it's worth, in most cases, I really don't see a clinical need for basal insulin in pens, either. Yes, it is mildly more convenient, maybe. If you take modest doses of basal a pen is handy. But most basal users (our type 2 cousins) use some pretty large doses. Like 60 to 80 units at a time. That blows through a pen in days, plus it's a long "push" of the plunger. In my opinion, baring any physical limitations like the ones you have, it's actually easier for most people to take a large shot with a syringe than with a pen. Plus you are generally taking your basal in the privacy of your own home (or at a nudie bar where the lights are dim) anyway.
I'm a much stronger advocate for pens for fast-acting insulin. Fast-acting is taken much more often, and in much smaller does. Plus, these are the pens that frequently need to be used in public, and not just in nudie bars, but at Starbucks, at Burger King, in jet airliners, at Target, and on the floor of the New York Stock Exchange (yes, I do get around). The facts are that (1) sugar-normal people sometimes wig out when they see someone playing with a syringe in public; and (2) even though most people are too busy being self-absorbed—or texting—to notice that we are using a syringe in public, those of us who use syringes always wig out worrying that someone who sees us will wig out. The bottom line is that when you need to take a shot of fast-acting insulin, you're at greater risk of putting it off or skipping it if you are stuck with syringes and vials. This issue, that pens increase compliance, is more important to me, clinically, than the fact pens are well proven to make living with diabetes more tolerable. And a better argument to defend them with to insurance, too.
So, anyway, Kimberly, hopefully that offers you some help. And while we're on the subject of how to get what you need, I can't help but think of the problems the Medicare crowd is having with CGM. Unlike your situation, where the decision to supply vials over pens came from the MCO, with CGM and Medicare, the lack of coverage comes straight from the top. How do you advocate for yourself with Medicare?
I have no frickin idea. Really, I don't. But I'll offer a suggestion or two, and only time will tell if my thoughts prove helpful.
Now, I'm kind of an old-fashioned guy. I prefer riots in the streets with the throwing of bottles and rocks over Twitter and Facebook campaigns — although in the face of injustice any revolution is a good one. So I think a more traditional approach to change might work better. If we want to change Medicare I think we need to go through our elected officials. I think it's easier for someone at Medicare to ignore 12,000 emails than one U.S. Senator.
Of course, it's also easy for your U.S. Senator to ignore 12,000 emails, too; so I suggest an in-person visit, if you can manage it. If you do travel to Washington specifically to see your Congress people, they will almost always make the time to meet with you. The advantages are two fold: You can make a human impression, and you are going straight to the top. Emails and letters are read by staffers. If you go in person your message will be delivered to the person who needs to hear it. The person with the power to act on it.
Oh, and as much as you'd be tempted to, please leave your bottles and rocks outside the Senate office building. The doors have guards.
So revolt. But revolt safely.
This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.