Terrible First Page Article in the Sunday NY Times

jrtpup and I agreed that when it comes to diabetes, a touch of OCD can be really, really useful. We had that conversation often.

I absolutely agree!

I am a part of the JDRF Advocacy Team, and received an email from them today in response to the NY Times article. The gist from JDRF is "Rather than being “high-priced gadgets and disposable accoutrements” as the article defines them, these life-saving advances are indeed just that: life-saving for individuals living with T1D. A recent study documented that such advances helped add roughly 15 years of life for those diagnosed with T1D. The New York Times story suggests that some medical advances for T1D, which could mean a longer life and better health for some people with T1D, are not worth the cost - a premise JDRF completely rejects." I have to agree with JDRF--as I mentioned in my previous post, the improved technology has both made my life easier and better but also reduced nighttime hypos, which are indeed a serious matter.

Me, when I stop and contemplate the geniuses behind the Dexcom and insulin pumps and the improved insulins, I am truly grateful. I would bet that those geniuses didn't just do it for the $$$, but take great satisfaction that people's lives are improved. Here's to them.

Analogs, pumps and CGMS are much less significant than meters.
It's always risky to speak about someone else's path without having walked it :-)

I've been a T2 diabetic for 15 years. Analog insulins and CGM are hardly simple "refinements" to home BG testing.

First, a CGM is a home BG meter -- just a much, much, much better one. It's new tech right now (in the geologic timescales of FDA approval for stuff). I predict that 20 years from now, every diabetic will be using a CGM to monitor BG, it will not require an invasive sensor, and the accuracy will be such that existing blood-drop testers will go the way of buggy whips.

That said, the CGM and insulin therapy were the keys to getting my BG under control.

My fundamental issue with various complaints and criticisms regarding medical costs is, what's your solution?

I grew up with a doctor and nurse as parents. I've seen the health care industry from the inside. I'm COO of a small tech company, we run lean, are successful, but still our products "seem" really expensive. Yet, I know where those costs go, and it's not in anyone's pocket.

Looking at the net profit of the various pharma and device makers, I see nothing to suggest obscene, greedy profits. Indeed, the profit margin of of pharma companies, health insurance companies, device manufacturers is substantially below that of big tech companies like Microsoft, Google, etc., yet no one complains about them.

My point is, the costs we are incurring seem to be in line with ordinary, acceptable, business models and accounting. This stuff just costs a lot.

It would cost less for us in the US if we didn't have to carry the extra burden of paying the amortized development costs for the rest of the world, but that's the way it is. All of you in Canada, UK, France, Spain, and on and on we're paying for you. Period. And if US consumers were'nt carrying these costs, we wouldn't have Humalog, Apidra, G4's, Omnipods, and on and on.

Even the European companies do the lion's share of their research in the US.

I don't like it, but I rather have the treatment and pay through the nose, or not have it at all.

I don't "need" a pump. I don't "need" analog insulins. Heck, I didn't really "need" flex pens when I was still on MDI. Trying to quantify how much the apex of technological advances in diabetic care (pump) has improved my control over the R and NPH + syringe I used 30 years ago is a difficult thing to do. My best guess tells me maybe 10 - 15% "better" Blood Glucose numbers. That's a difficult number to square with the fact that it would cost me near $1500 more a month out of pocket.
If controlling BG is the singular measure of "need", then you are right.

I submit that people need far more than that to be happy, functional human beings. One thing that analogs, pens, pumps, and CGMs have done in addition to improving BG control is reduce the inconvenience, social impact, and improve the smooth integration with one's life routines managing their D entails.

These technologies can take a PWD from overburdened and depressed with all the seemingly Sissyphean effort to someone energetic living life.

These are "needs" just as well. When the metric we use to define "good enough" in diabetes treatment focuses almost exclusively on just BG control, we are leaving a great deal of the disease impact out of the equation, and therefore are not really treating sufficiently.

Agree. Particularly about the insulin.

It would also cost a lot less without the (a) widespread corruption at all levels of the system, from the local doctors' offices right up to the federal regulators, and (b) the insane legal expenses.

Your basic point is true, the stuff is costly to develop and produce. That in no way changes the fact that there are additional costs (big ones) that have nothing to do with product development or manufacturing.

Yup, that's definitely what I said Dave.

But, I agree with what you said too, which is why I put "need" in quotations and followed up my own statement with this...

What a pump has done is bought me a much better "quality of life with diabetes", read, "a lifestyle as close to my lifestyle before diabetes without sacrificing complete loss of BG control".

At the end of the day, though, I pay a premium for my current state of care whether I "need" it or not. If, however, I found myself in a position where I absolutely had to do without a pump, or even analog insulins, because of lack of funding, I could adjust back without undo burden on my ability to control my BG or spiraling into depression because it's more difficult to bolus for pizza or a burger, or more difficult to dose for exercise.

In fact, for activities in my day like two hours of jiujitsu, it was much easier to accomomdate on MDI.

I, of course, am an N of 1 so my take is only applicable for me and people like me, just like the ability to be happy and healthy on a pump + CGM + analog insulins is only applicable to people who find themselves in that position.

However, I still found the article informative and I feel like the discussion we are having here is a bit more on point.

Thanks!

Below is a message from JDRF to people with diabetes, in response to the NYT article:

Dear Advocate,

On behalf of everyone affected by type 1 diabetes, JDRF is outraged by the recent article in The New York Times trivializing the benefit of medical advances for people with T1D. JDRF has spoken out about the article and hopes you will too, in their comments section.

Rather than being “high-priced gadgets and disposable accoutrements” as the article defines them, these life-saving advances are indeed just that: life-saving for individuals living with T1D. A recent study documented that such advances helped add roughly 15 years of life for those diagnosed with T1D. The New York Times story suggests that some medical advances for T1D, which could mean a longer life and better health for some people with T1D, are not worth the cost - a premise JDRF completely rejects.

JDRF supports continued innovation of new medical advances to further improve the lives of people with T1D, and to ultimately cure this disease. Such step-wise advances, big and small, are how we will ultimately create a world without T1D. We need a healthcare policy that supports innovative research and new advances for people with T1D, and one that makes these advances available to every person who needs them.

Please read the Times story, and if you think the article trivializes technologies you need every day, then choose the option: "If you have a chronic condition." Leave a comment describing your life with diabetes, how your management directly relates to the devices your insurance company covers, and how it is #NotJustAGadget.

Sincerely,

JDRF Advocacy

I had about 5, maybe more years w/o A1Cs on an R/NPH MDI regimen I came up with myself, sort of like Tim, although I also did IV R shots not that infrequently to make it work faster. When I got my pump my doc and/ or the SalesNurse told me that NPH is only 53% likely to peak when it's supposed to. I didn't bother keeping track of anything during those years so I have no proof but that very much mirrored my experience with the same dose at the same time could produce wildly different results. I just chalked it up to YDMMV but, in retrospect, I think the newer insulins would do a better job than that given my very brief (3 days...) experience with Novolog/ Levemir during my last pump failure. With that, when I first got into a doc, I got a wildly cooked A1C of 5.8, no doubt full of troughs and peaks averaging out there. He was surprised, as I was I, but I kept at it, I "was fine, I know what I'm doing..."

That was before I started working out and trying to lose weight, again, just guessing at adjusting doses, with no real idea of carb counting other than "less food= less insulin" somehow, I had some 6ish ones for a few times but then went up to 7.2 and 7.7 or 7.7 and 7.2 or something like that when I started working out 6x/ week every week all the time and I wasn't happy about that. That's when I got a pump. It may have helped that I was into a an arduous martial arts program and the boss there was on me to lose weight, etc. but that's when I decided to get a pump. It made things fall into place. It did enough logging that I didn't have to log, it (along with the DOC, which I stumbled upon at the same time, in 2008, then TuD in 2009...) all fell into place. I had a string of 5.8 A1Cs and was pretty pleased with that.

We moved so I stopped martial arts and started running, which was a bit of concern to me and MrsAcidRock so I decided to give a CGM a try. That *really* made things fall into place and was a tool to push things a bit more. I've had maybe 1x 5.6 and everything else has been in the low 5s since I got that, in 2010. I got a 5.1 back today. It seems like much less work to keep my BG on a shorter leash as, instead of flying all over the place, I know where it is and can ride it where I want it.

As seen on FB several hours ago by Manny http://diabeteshandsfoundation.org/an-open-letter-from-askmanny-diabeteshf-to-nytrosenthal-nytimes/

My take on the article ...have we done such a bad job sharing with our world what it is like to live with this disease 24/7 ?
I wear a prosthesis , have since my breast surgery in 1984 ...no one , not even my insurance questions me , when I replace the " thing ". I know it's a lot cheaper than any diabetes " tool " I use ...but neither have I been in the ER for diabetes related issues ( I do feel blessed !!)
My Sister in Law living with diabetes , legally blind ...not because of diabetes ,uses a talking glucometer ...she requires assistance with delivering insulin ...yet it gives her some sort of control to be part of her treatment .

Acidrock is a unique and special person, Bertie; it takes awhile to get used to his way of speaking (and thinking!).He definitely isn't imitating anyone but himself. But when you get used to him you'll appreciate both his spirit and his knowledge.

"Wildly cooked A1C" = A1C that looks like a good number but is the average a lot of lows and highs.

I'm probably more likely than AR to fall into "references to our shared cultural heritage" but it's shared only if you are in the 50-or-so age range. I think I'm a little older than AR but can follow him pretty well. I would tend to refer to such A1C's as "fully baked" (although admittedly I'm a little young for The Graduate, I certainly identify more with the Buck Henry stuff rather than say John Hughes, although I will admit that I can appreciate Ferris Bueller a little better now that I have kids of my own in high school!).

I like to think of it more as William S. Burroughs, more than "Everyone Loves Raymond" which I have to admit I've never seen. WSB's English was fine but I think that his perspective is useful. The argotic language of the druggie demimonde is very appropriate for discussing insulin. I've seen people with plaid hair and watched my family turn into space aliens during a couple of my more severe hypos which, obviously, I would encourage everyone to work to avoid.

Tim is right on the money with my use of "wildly cooked" You can hit an average of 100 with 150-150-50-50 or with 90-110-90-110 but I'm working more for the latter of the two!

I'd say too Nel that I think most people think disease+ medicine= cure and have absolutely no clue about the balancing act that people with diabetes do like 20,30,40, 50 times/ day, maybe more than that (CGM sensors crank out 200+ readings, at least the Medtronic ones...). Not to mention the ***CONSTANT*** aggravation of getting supplies, etc. form insurers, dealing with doctors who don't know nearly as much as we do about it, particularly dealing with other conditions whether it's a sprained ankle or breast surgery or anything else.

I think the fact that the current guidelines aim at "okay" numbers instead of trying to "kick ■■■" might be part of the problem as I've found it easier when I've been on a roll but I am not a doctor and it doesn't seem to be a very popular notion. I know there's other folks here (e.g. Clare and I think Sportster...) who've menitoned in threads that aiming lower helped them smooth things out so I don't think I'm the only one who's found that...

Manny's open letter to the New York Times and others, posted on FB, is a must-read for us all (see Nel's link). One of the appalling notions Manny addressed is that talking meters are "useless" by pointing out that they are made for those of us with diabetic retinopathy. And CGM's are "useless"?

Thank you, Manny!

As I think I've said a few times, the problem is the current treatment guidelines. Particularly towards type 2's? I've found when I was misdiagnosed as type 2 the doctor simply didn't care and really under any doctor when I had my type 2 diagnosis? Oh you're fine! But when I got properly diagnosed as a type 1 they realized my numbers were bad and wanted to help me and made sure I was under tight control?

I'm gonna go on a huge ableism rant related to diabetes because of this thread and some experiences.

Of course, non-diabetic people, who don't have a beloved diabetic in their life, don't understand the big deal involved with how terrible some professionals see the guidelines are and how they actually cost diabetics more money than less by giving them guidelines that put them at risks for complications more than prevention and reduction of complications. The worst part is diabetics get frequently shamed by medical professionals and staff at hospitals because if they end up in the ER or ICU "they did it to themselves." or "Didn't take care of themselves" (I had another secretary tell me this yesterday when we got a diabetic in the ER and I was like welllll thennnnn ) when I feel like a lot of the negativity involved with diabetes is because medical professionals don't do their job enough and don't provide people with tools like pumps, cgms, and good meters (that also fit their needs if they're vision impared or need something special with their meter, accuracy aside) nearly enough. They're more into cost reduction and profit gained from their patients than helping them.

Postings like this always disturb me.

Greed, on the part of medical device manufacturers and drug companies, is not the driving factor in the high costs of products that, seemingly, should be very inexpensive. Were that so, it would be trivially easy to demonstrate, simply by referring to the corporate financials, and comparing to other industries.

When that's done, health care products are not particularly lucrative. Rather, software is (compare Microsoft and Google's profit margins to Medtronic's, for example).

The high cost comes from two main sources: FDA approval protocols, and lack of economies of scale in a relatively small market.

There's little we can do about the latter. There are things we can do about the former, but it takes knowing that that is the problem, not greedy shareholders and executives rubbing their hands together in glee as the billions in profits flow in.

The sort of grossly mistaken attitude above that -- sadly -- so many PWD seem to have works against us... take away the revenue from these products that is supporting their development (a burden carried, btw, almost entirely by US customers), and they won't be developed.