Welcome back to another Saturday edition of our weekly advice column Ask D'Mine.
Note from your host Wil Dubois, a veteran type 1, diabetes author and community educator in New Mexico:
It's been a rough week for me, People. It started with one of my patients trying to commit suicide in the lobby of the clinic and pretty much went downhill from there. Why did he want to kill himself? Because his insurance refused to pay for his strips and his insulin. Of course we talked him down, and got it straightened out. But still, the incident illustrates the level of frustration, anger, and outright despair that comes from the constant roadblocks that the money-men put in the way of our trying to get what we need to take care of ourselves. One reader wrote me this week about a long series of energy-sucking challenges to her care and summed it up with: "Life for us is hard enough as it is," without the headaches of trying to get what we need. How true. I could not have said it better.
Got questions about navigating life with diabetes? Email us at AskDMine@diabetesmine.com.
Mike, type 2 from Maryland, writes: I hope you can help me with this. I am currently on three medications: Levemir in the morning and at night, Metformin once a day, and Novolog when needed. While I have a relatively good job and can meet my monthly obligations, I have zero extra income. My insurance just went up to a $3,000 deductible and I really do not have the money for my meds. Do you know of any meds that are less expensive that can be used? I know this is an odd request but I really want to treat myself, but can't afford it. I hope you know or at least can point me in the right direction.
Wil@Ask D'Mine answers: I keep telling people that things will be better once all the health insurance reform stuff kicks in, and I believe that. But in the meantime, it's becoming increasingly clear that we are in for some exceedingly dark days before we get to the dawn.
I guess the first thing you need to take comfort in is that you are not alone. I don't know how much that helps, but I think if you're in a leaky lifeboat surrounded by hungry man-eating sharks, it's better to share that fate with others than go down alone. The health plans seem to have gone crazy these last few months. I have no way to prove it, but I believe that they're trying to wring every penny out of the old paradigm before the new world order limits their profits. In most states, premiums are hard to raise (due to government oversight) but the insurance companies have much freer reign when it comes to deductibles, drug tiers, formularies, and covered benefits.
It's one of the few areas in American business law in which one side can arbitrarily and unilaterally change their side of the contract while the other side can't do bupkis about it.
But to your question: I have good news and bad news. Well... I have good news, bad news, and more bad news. The good news is that metformin is cheap. You can get a month's supply for four bucks at any of the big box stores. In some cases, you can get a 90-day supply for four bucks. The first bad news is that Levemir isn't cheap anywhere, and the second bad news is that Novolog isn't cheap anywhere, either. And I guess you have a third element of bad news, too—and please don't try to kill yourself at this point, my nerves can only handle one suicide attempt per week!— because you have insurance, you don't quality for Patient Assistance from the insulin makers.
Sometimes you are better off with no insurance than with crappy insurance. But that said, for God's sake, don't cancel your insurance to try to save money on the meds you need to stay alive. One uninsured hospital visit could cost you your house and your retirement savings.
So this sucks, but my advice is that you go to your doc and get him or her to switch you from Levemir to "N" and from Novolog to "R." Both "N" and "R" are old-time insulins that are somewhat affordable. For instance, Walmart sells either one for $22.88 a vial. (They also sell cheap meters and strips that aren't half bad.) Compare that to the average national retail price of Levemir at $189.99 per vial and Novolog at $164.88 a vial.
As you are using your Novolog "as needed," you can make one vial of the "R" last at least a solid month. You might even be able to stretch it for two months, just be alert to the fact that as time goes on, it will get weaker and weaker and you'll need to use more. I don't know what your dose of Levemir is, but no matter how many vials you need per month, switching to "N" will save you 88%.
Now remember that I'm not allowed, qualified, or licensed to give medical advice in a patient blog—but if your doc is clueless about how to move you backwards in time, I heard somewhere that you can dose "N" unit-for-unit. In other words, take the same amount of "N" that you did of Levemir. The problem is, however, that "N" works differently. It doesn't last as long, and it's not as flat in its action profile. It takes 2-3 hours to begin working, and has a peak in 6-8 hours (giving you a risk of a low at that time). You'll adjust, but it will be an adjustment. "N" also doesn't last as long, not an issue for you, as you take two Levemir shots a day anyway, but for folks who only take one shot a day of a modern basal insulin, switching to "N" would require both a morning and an evening shot.
Likewise, the "R" acts differently than the Novolog. It's slower on the job and hangs around longer. You'll just need to stay sharp while you get used to it.
It's frustrating, vexing, and depressing when you are trying to do what's "right" to take care of yourself—which saves your insurance company money— and they won't even give you the most fundamental of tools you need. But there are solutions.
And even if there weren't, it's not worth killing yourself over.
James, type 1 from Michigan, writes: I recently made a mistake when choosing my insurance plan and now have a gigantic deductible for anything non-generic. It's a trend, I guess. Anyway, can you tell me why there is no generic insulin? I am on a pump and use Humalog. Cost? $185 a bottle that will last me three weeks. I could substitute Novolog, but their prices are in lockstep with Humalog. Price fixing? Then I tried Apidra, but it didn't work as well. Why, oh, why, if insulin has been around so long why isn't there a generic? It makes no sense. There are so many of us, we should be able to apply some pressure somewhere. Seriously, how do people without insurance afford being diabetic? Is it a sinister plot to eliminate diabetics from the gene pool? I'm not normally a conspiracy theorist, but this just makes no sense. So when I finally had no choice but to fork over the $185 for the insulin, the pharmacist opened his refrigerator and there were literally hundreds of bottles. There is no shortage of insulin. And no reason that it costs so much. I've had doctors who would help by handing out free vials to steer patients toward using a certain brand, but now they don't give any out at all (another part of the plot?). Find me a petition to make generic insulin available for those who don't have insurance and I'll sign it (even though it may not be effective because all those people have died because they can't afford the insulin they need to stay alive). Rant over. Thanks.
Wil@Ask D'Mine answers: I am 110% positive that there's not a sinister plot on the part of the drug makers to eliminate us diabetics from the gene pool. That would be killing the goose that laid the golden egg. Doing us all in would cost them a ton of money. (However, I'm still open to the possibility of a sinister plot on the part of the health plans to eliminate us diabetics from the gene pool — because they get their money from a different source).
But the short answer to your question is that there is no legal reason there couldn't be generic insulin. The older formulations are out of patent protection. But making insulin isn't like making cookies (or Lipitor, Allegra, or Prilosec, for that matter). Making insulin is neither cheap nor easy. Building an insulin plant takes hundreds of millions of dollars. No company in its right mind would spend that kind of money to make a cheap generic product. The return on investment just isn't there. Plus, the older insulins aren't as good. Only those of us that are desperate would buy generic over the more modern, better behaved insulins. That would make it both a low profit and low-volume businesses. No petition would change that.
But all of that said, I would ask your doc to fight your insurance on this. As there really isn't a "generic" insulin, your health plan doesn't really have a choice. They are obligated to cover a "name brand" in the absence of a generic.
And to answer your other question about how do people without insurance afford being diabetic—they don't. Diabetes health outcomes for the uninsured are shockingly bad. Not having insurance is scientifically proven to not only lower the quality of your life, but also to cut your lifespan by fully 25%.
So there you have it: Not having insurance kills you slowly; and sometimes having it drives us to nearly finish the job early!
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.