LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Wednesday, December 05, 2012

Tomorrow is yesterday

So this is what my life has come to. Well, my career anyway. The assignment was so depressing it took me several weeks to get it done. Not only was the research difficult—no one has ever done this before, so I’m on uncharted ground—but I had to deal with alternating waves of depression and rage.

It’s not easy being the Harbinger of Death.

I suppose I should consider it an honor that I was chosen for the task. It shows that the powers-that-be have great faith in my abilities. But still…

It’s not like anyone is ever going to see it, but I felt that the document needed a preamble. A declaration of sorts. That’s not something that you typically include on medical standing orders.

I wrote: With worsening economic conditions and growing numbers of un-insured who do not qualify for assistance—as well as under-insured or financially strained patients who can no longer afford co-pays on frontline meds—a reverse protocol is required for moving diabetes patients off of frontline therapies into older, less effective, but more economical therapies. The Medical Team acknowledges that many of these therapies are both riskier and/or less effective than the preferred medications in our decision trees, but that in the spirit of harm reduction it is necessary to make compromises…

Well… now that I re-read it here, it doesn’t seem as eloquent as I was making it out to be in my head. Thomas Jefferson definitely has me beat hands down.

So, yeah, my assignment was to create a “Poverty Protocol,” a medicine decision tree to move people backwards in time. To figure out how to reverse engineer Lantus back to NPH. Novolog back to “R.” To figure out how to best replace meds that are working, but can’t be afforded anymore, with ones that are generally considered to be in the dust bin of diabetes history.

How big a difference can this make, really? Well, it can absolutely help the pocketbook. Take Levemir for instance. The average retail price if you don’t have insurance is $136 per vial. If you’re a type 2, you could very well need five vials in a month. That’s $680. If you just lost your job and your insurance how can you afford that? Or maybe you still have your job. But your spouse just lost hers and the family budget just took a hit. Or maybe you wake up one day and discover that your health plan has just created a new Tier 4 copay on your insulin that requires you to pay 30% of the retail cost.

Me to the “rescue.” Our clinic can buy vials of NPH for less than $1 per vial. Money. That I can save you. But what will it do to your health? Lord only knows. We won’t know for a few years.

NPH is erratic. It’s short lived. It has a nasty peak. Basically, it’s the angry mule of insulin, and I’m surprised in this world of Lantus and Levemir that it’s even still made at all. But thank God it is. Better angry mule insulin than no insulin at all.

And the problem is not just limited to insulin. Thirty days’ worth of Merck’s best-selling pill Januvia costs $216 dollars. That’s $7.20 per pill. The nasty pancreas-breaking pills called sulfonylureas, that wring the type 2 pancreas out like a sponge to get every drop of insulin possible out of the failing organ, only cost a penny each.

So that was my new Third World toolkit. NPH. R. Mix. And cheap pills I regard as poison—use those damn things for very long and you’ll need the NPH and the R.

Once upon a time there must have been protocols for moving people from NPH to Lantus. You know, back when it was first approved twelve years ago. But that was back before the internet was the fountain of info it is today. I couldn’t find any guidelines at first, and I’d long since thrown mine away. Who needed them? Everyone had already been moved off of NPH. I called Endos and CDEs in my “pack,” but no one could remember what they did back then. Finally, I found an archived prescriber’s newsletter from 2009 that had guidelines for how to upgrade people from that nasty ol’ NPH to Lantus and Levemir. I was able to reverse-engineer those as a starting point.

But there were other considerations. It isn’t as simple as “here’s your new vial, and your new dose is ___.” For one thing, most of our people use pens. No NPH pen. Patient, meet syringe. Syringe, meet patient. No trauma there. And back when we all took NPH we understood the peaks. At least I did after NPH landed me in the ER. Going from an insulin with a peak to one that is peakless, or nearly so, is a breeze. Think about what it will be like for patients who have always had peakless insulin to adapt to an insulin that acts differently two hours after you take it. And differently again in four hours. And differently yet again in six hours. And still differently again in eight hours…

And I had to think not only about what to do for people who were in control and can’t afford their meds, but also about those who are out of control and can’t afford their meds. How do I upgrade their therapy and downgrade their cost at the same time?

My proposed “decision tree” sketch began to look like the organizational chart of the Pentagon.

And I’m in the same leaky boat myself, although I recognize that I have it waaaaaaaay better than most. First, I lost my battle to get my beloved iBG Star covered and have had to stop using it. Then I had to go from using a pen to using syringes for my fast-acting. I was paying for the Humalog out of pocket, but now the price has gone up on me. My health plan won’t cover the Humalog cartridges my half-unit pen requires. Their opinion: Use a half unit syringe and a vial of Novolog. It saves them a few pennies a month. So that is what I had to do. By the way, do you know how hard it is to draw up a half-unit of insulin in a syringe? I had to pick up a syringe magnifier. Then I accidently sprayed insulin into my left eye when trying to clear bubbles from one of those fucking syringes. It wasn’t as painful as you’d think, but it just goes to show the kind of week I’m having.

I get bitter and angry because I’m working 80 hours a week to help people be healthier and I can’t even get the tools I need for my own care. I get angrier still when I think how many millions of dollars I’m saving the health plans via my work, and they fight me over every penny, both for myself and for my patients.

Several weeks ago I was at the 2012 DiabetesMine Innovation Summit at Stanford. There were all these amazing people with great visions of tools that can help us rise above the challenges diabetes places in our way. Patients, clinicians, inventors, investors, and industry were at the table together. Even the FDA was there talking frankly and openly about their desire to advance the safe use of technology.

But the 800 pound gorilla was missing. The health plans left their seats at the table empty. What good will the best gear do if no one can afford it? How do we make them understand that healthy us makes wealthy them? I just don’t understand it. I suppose it comes down to the quick buck. The myopic vision of Wall Street. Live for today with no thought for tomorrow.

There’s a lot of talk about the fiscal cliff in Washington. But I’m more worried about the brick wall. The one we are careening towards at 100 miles per hour. In 1980, we spent $256 billion on health care. In 2010 we spent $2.6 trillion. That’s 17.9% of GDP. How much more can we spend? Are we going to spend half of every dollar in the country on health?

So between my own losing battles, writing the Poverty Protocol, and being charged $9.30 by my bank for not having enough money in my account for them to invest, I’m pretty depressed about where we’re headed as a society. Especially when it comes to where we’re headed when it comes to health “care.”

Sometimes I feel the money men are building themselves fancy new buildings using our tombstones for bricks. And in my darkest moments, I wish a plague of diabetes on their houses. Of course, even if that should happen, they’d be fine. They’d still be getting the Levemir, the Januvia, the pens, and the iBG Stars.

They’d never experience my Poverty Protocol.


Blogger Scott E said...

Love the post and love the writing. Hate the topic. But then, I guess that's the whole point.

I think that we, as a society, have missed the mark when it comes to affordable health care. The focus seems to be on "who is going to pay (and how)" rather than on "why is the cost so damn high to begin with"? I, for one, don't believe that the CEO's of Big Pharma are driving around in their gold-plated Maseratis gripping the steering wheel with hands covered in blood. I don't believe the rich are getting richer at the expense of the poor getting poorer.

In my mind, the newer medical treatments: insulin, CGMs, pumps, etc. are so expensive because of over-regulation. The costs of research and development are what they are; the costs of JUSTIFYING their R&D to gain approval to market, and then the twisted process in actually getting those products from manufacturer to patient, is well beyond what it needs to be. The issues can be solved, but it takes political will. Just shifting the costs from one entity to another, or subsidizing one's costs for a product just to increase another's cost for the same item, won't do it.

I'll get off my soapbox now.

As for the NPH "solution", I believe the best way to get NPH to work nowadays is to follow an MDI regimen of smaller doses. Just like people have split the "once-a-day" Lantus into twice a day to spread out and soften its peakless peak, taking NPH several times a day, stacking to create as smooth an overall product as possible, is the best possible outcome. (Yes, I know how you hate stacking insulin!). It would be painfully inconvenient, but if the peak from a 20 unit injection could be spread out across five four-unit injections, then the peak wouldn't be as high, right? Just a thought, and I'd be happy to discuss further if you want.

By the way, NPH does have some uses - notably for transitioning on and off of a pump. My last dose of NPH came just after my last dose of Lantus and before my first pump-delivered Novolog. Not ideal, but it's what we've got.

7:55 AM  
Anonymous Katie said...

I'll be thinking about your post the rest of the day.

8:01 AM  
Blogger Sara said...

And Obamacare won't fix a darm thing that you wrote in your post. I believe in some circumstances it will even make it worse. Sure we're guaranteed health care, but they never said what that care will include.

11:14 PM  
Anonymous Sysy said...

Holy freakin crap this is a great post. I get riled up with this subject, too.

I remember being able to do well with R and NPH (before I began rebelling) BUT having to endure the pain of a strict schedule during the years of constant sports and childhood activities. I remember waking up and testing, giving 12 units of NPH and 5 units of R, eating breakfast, having a midmorning snack, giving R for lunch, then having an afternoon snack, then testing again at 5pm and giving 12 units of NPH and another 5 of R. Each meal needed to contain the same carb load. Every shot needed to be given at the same exact time every day. Every activity that wasn't scheduled (many happen to be spontaneous for us humans) threw off the balance and created unexpected lows and highs (not that those don't happen now). My sister, who didn't rebel, maintained a 7% A1c with few lows as a kid for many years but only because she managed to miserably adhere to the schedule. If someone told me to go back to these old insulins I'd cry my eyes out before doing so. Though like you said, they are certainly better than nothing.

Anyway, I'm torn about some things. I feel like everyone deserves to have easier access to the basics-however I wouldn't include the older insulin-those should be thrown into time capsules for godsakes. Then for those like yourself who need CGM's to be able to get them. And for those who just want them, well then to me that's not as big a priority in my mind as someone who can't afford any insulin at all. But maybe I say that because I do so well without a pump or cgm. It comes at a nagging cost of my being really strict and a big part of me is very aware that not everyone can be strict, just like I can't do math. And then I feel like children are an entirely different case altogether and parents need the help of these tools since they are managing a disease that is outside their body and so they can't feel warning symptoms.

Thanks for writing this. I'm going to back to my 46 day old humalog and lantus vials and plead that they keep working until I can afford more. In the meantime I will continue to skip lunch so that I can extend my quantity of insulin. Oh, the things we do to stay alive.

Sorry you had a hard week-I hope things look up soon.

12:50 PM  
Blogger Jonah said...

I like Regular- switched to it after four years on Novolog, and have been on Regular for two years. I feel like its action is smoother and more predictable. Regular really does pretty well compared to newer insulins. I thought it was going to take 5-8 hours to work (which is what I wanted it for, actually). Ha! It's done with me in 4 hours, same as Novolog was, and I can see it on my CGM graph kicking in in 15 minutes. I originally intended to use both but pretty soon I decided I didn't want any more Novolog. Also Regular doesn't expire for 42 days vs Novolog's 28.

I have been thinking about trying NPH, but the evidence is much stronger that NPH is a risk for nocturnal hypoglycemia, and I have plenty of that with Lantus.

I recently bought a jet injector primarily because I expect to be a big financial savings to me. Instead of paying a copay of $50 every 3 months (for about $75 worth of syrines), I can buy 4 vial adaptors for $38 for an unlimited number of shots for those four vials. Since I use each vial of Regular for 6 weeks and do about 4 shots per day of Regular, this comes out to about $112 in savings per year, which after a while adds up.

Btw, I hope you all are aware of the patient assistance programs. If you're poor enough and uninsured they send insulin to the doctors' offices for you.

8:59 PM  
Blogger Wil said...


Very aware of Patient Assistance Programs (which we call PAP), but many of my people aren't quite poor enough for PAP while still being too poor to afford thier insulin! Rest assured, we use PAP when ever possible.

10:24 PM  
Anonymous Abi said...

I'm from the UK.
We don't know we are born here- Free treatment at the point of use- however, with our economy going down the pan I dread to think what will happen to healthcare here in the future.
I'm shocked at the prices quoted in the US. I think out national health service does a very good job of negotiating with pharmaceutical industries and keeping prices down as probably the only purchaser in the UK.
Here levemir is not available in vials and I think pens are more widely used in the uk. As far as I recall 5 3ml pencils or disposable pens of either lantus or levemir cost the NHS about 40 pounds- not sure what the rate is- possibly $65 to $70?
Most UK patients would not have a clue how much their treatment costs-I'm only aware of this as a health care professional
I would be nervous if I had to return to the older insulins but flexible therapy was pioneered in Germany in the early 1980s using NPH type insulins 2 or 3 times daily as a baseline with soluble ( regular) pre meals according to carbohydrate content- and with this regimen patients were encouraged to vary mealtimes- so these insulins obviously do work for some people ( although I'd prefer to keep mmy pump or use mdi with levemir and novorpaid

9:17 AM  

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