RE: coverage of CGM's

Type 1 and LADA
1

Now hopefully, I can attach the article, but in a nutshell it said that 75% of healthcare spending on diabetes is related to treatment for the longterm complications - something like,Oh I don't recall exactly, but something like $130 billion in 2002. It states that the amount of expenditures to avoid those complications doesn't come close. Perhaps this will help in the fight to get coverage for technology we would like to have access to. Anyway, here's (I hope) the article.

Damn! I saved it twice and I can't find it to attach. So...It is from Diabetes In Control, a weekly newsletter. It came out today, it is an excerpt from the Handbook of Diabetes Care, 4th edition. Maybe someone with better computer skills than I (which is most everybody) will be able to post it.

I thought it provided good - empirical - data to counter claims by Medicare and insurance companies that pumps and CGM's are too expensive and not all that valuable.

2

Is this the web page that you are referring?

3

Medicare's refusal to pay for CGM's as well as their test strip limits both depict an ostrich with its head in the sand. It's comical in its willful denial of the long term facts. Studies have shown, time and again, that well controlled BGs in PWDs, tilts the odds of costly secondary complications materially in favor of the patient.

I offer, however, that Medicare's non-coverage of CGMs is not the ultimate limiting factor. Even if Medicare paid for CGMs, I believe that the average PWD would not want to adopt this device. I don't think this is the case with the average TuD participant. We are a subset of PWDs that readily adopt most treatment advances. We do not represent our cohort well.

I think it's only a matter of time until Medicare sees the error of its ways and recants this ignorant policy. We need to nudge them in that direction!

4

Most of the complications occur in T2s, simply because they vastly outnumber T1s. And they get ■■■■-poor treatment for the most part, and Medicare and insurance companies are even MORE reluctant to provide them with technology that might help them. For example, they are greatly limited in the amount of test strips they get per day, and they are told that testing once a day is plenty. So they test fasting or before meals, and are told their numbers are good, but no one knows how high they go AFTER meals, nor whether they are susceptible to complications based on the time they spend high. Even if all the oral meds have failed, and they are distinctly insulin-dependent, their insulin production usually falls above the range that Medicare has set for a cut-off for provision of insulin pumps. And while they could benefit from at least a trial use of a CGM to see what their BGs are really doing, that's not possible under current regulations.

As far as T1s, there is far more recognition of the need for technology. I was lucky, when I was working, that my insurance covered my CGM and pump 80%. Still left me with a lot of expense, but far better than nothing. Now that I'm on Medicare, they don't cover the CGM at all, which is really stupid, because I'm hypo unaware, and live alone, and if I couldn't treat myself, I'd be in a world of hurt. But again, I'm lucky, because my secondary, which is my old primary, does cover my CGM 80%, so I'm NOT left in the cold. Wish I could say that for everyone else who is struggling with our patchwork, unfair insurance system. I pay a pretty penny for premiums, but at least I get what I need -- that SHOULD be the case for everyone.

5

Yes I agree with everything you, Terry and Natalie have said here. I'm sure my two hospital stays with complications(around 50-60,000 for the hospitals alone) would also have been a lot more expensive than one of the many doctors I went to doing some tests, diagnosing me and starting me on treatment before I went into a crisis. At that point I probably would have had the option of some of the many preventative treatments for type 1 also.

I don't understand what their reasoning is for this, maybe that if everyone started using all the technology then it would be more expensive in the short term, or just cut costs at all opportunities. If they started putting caps on what can be charged for all of this including drugs that would have a huge effect. I know they don't pay what is actually charged in many cases anyway.
6

now, now Natalie_C - are we kicking butt now?

That aside, your comments are on target and I fully agree and thank you for your fine appropriate comments!

Please have a great day and best wishes.

7

Who, me kick butt? I'm just a little old lady who needs help crossing the street, LOL!!!!

8

YES! Thank you Terry!

9

If more people could access the tech, the costs would go down - simple economies of scale.

As to the comment above about those of us on TuD being a subset. Yeah, that's true, but why should we be penalized for taking good care of ourselves and thus continuing to contribute to the economy, pay taxes stay off disability? Someone once said that the attitude of insurers is "Aah, so you got sick., well go ahead and die and be quick about it"

10

Well, I'll be the contrarian here.

While I don't take issue with the 75/25% mix between costs of treating complications vs. prevention, as has been noted, the vast majority of this is T2's.

And the cost to manage a T2's disease, under current protocols, is trivial.

I'm a T2. I know.

Start really going after BG control agressively will boost the cost of prevention dramatically. I know that I, with a pump, CGM, and exotic high-tech insulin cost insane amounts of money each month compared to common T2 treatment. The common T2 is probably on metformin (super cheap), and told to check his BG a few times a week, twice a day if he's got a good endo and is a well-informed PWD.

The more typical T2 doesn't take anything, doesn't check his blood sugar hardly ever, and pretty much is treating his condition by "trying to lose weight". Meanwhile, headed for complications in a few decades.

Getting really serious about treating these people pro-actively so they develop fewer complications, and cost less in the future, well, it's gonna raise the cost of BG management enormously.

So while I don't deny that it's more expensive to treat the complications than preventing them, what I do say is I don't know. The article referenced (I read the whole thing) doesn't provide any clarity on that question either.

11

Of course, my point of view is that of a person with type 1. We are often lumped together with people with type 2 - assuming that we only need to test once a day (if that), that "behavioral changes" will get us off insulin, and unfortunately, the standards of treatment for type 2 are also often applied to people (especially adults) with type 1. And complications are complications. I don't think treating me for a complication is going to cost any more or less than for a person with type 2 - dialysis is dialysis. And it is still cheaper (that is effective treatment no matter the type) to provide the treatment a person needs than to let the complications and economic impacts occur.

12

I agree with what has been said here fully. My field I worked in required decent sophisticated test gear.

As a type 2 I bought a cgms and best thing I ever did.

Why this Stonehenge attitude pervades this disease ( type 1 and type 2) totally escapes me.

Get the volume up and price down. As one is not supposed to dose with this equipment ; it totally escapes me the fools who put this on a prescription basis - for what?

Other medical issues have cat scans, side scan sonar and mri technology but yet here in diabetes land it is the caveman finger prick machine along with Merlin's magic wand and other assorted incantations with limits on testing strips. How idiotic. Without repeatable, rational data it is not possible to properly control and diagnose this mess for both types of Diabetes.

I agree with the above comments and object to the present Stonehenge village witch doctor approach to manage these diseases. Numbers world wide especially on type 2 are most suggestive we are not properly managing and correcting this mess!

13

Another reply, regarding type 2 treatment. One of the benefits (yes there are a couple) of being Dx'd with type 1 (aside form an easier -I didn't say easy - time getting testing supplies) is that we have to take it seriously. I mean, there we are, getting this Dx and before we leave we're taught how to give ourselves injections and ge4t an Rx for insulin and syringes! We can't help but take it seriously. Most of us probably said we could NEVER give ourselves and injection. With type 2 its "watch your weight, make better food choices, and get more active" Whose doctor doesn't tell them that - whether you have diabetes or not.

14

A big problem is that most insurance companies are more concerned with what you are going to cost them in the next 12 months, not the next 12 years. People do change insurance companies often. Accountable Care Organizations (ACOs) tend to care more about a patient's long-term health.

Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association advocates for greater usage of CGMs and more test strips.

15

And what exactly does "watch your weight, make better food choices and get more active" mean, anyway? No more than vague platitudes that are NOT helpful. No specifics, no coaching on just what would be better choices, nor how to cook them to make them palatable, no free gym memberships, even if gyms weren't incredibly boring, and certainly no acknowledgement that losing weight is well nigh impossible for most obese people. That's what I mean by the fact that they get such LOUSY treatment, and then get lots of blame when the weight doesn't magically melt off, and they're scolded for their food choices when the scolder doesn't even know what they're really eating. They are victims of a MUCH nastier blame and shame game than a T1 could ever know, and then T1s think T2s have it easier. Hah! My fondest wish is that everyone would know that we're all in this together, even if we have different types, and we can all benefit from the knowledge and experiences of others. We can all benefit from research, too, whether it's based on our type or not.

And I'm EXTREMELY grateful that I'm not an obese T2.

16

I don't think that is the case here, this isn't a free market, it's all controlled by insurance and medical companies who have huge lobbying power. Insulin pumps etc. aren't used by enough people, even if they were openly accessible and a lot cheaper, most pwd probably still wouldn't use them. As it is only about 400,000 of about the 3 million people with type 1 in the US use insulin pumps for various reasons, cost probably being one reason at least. Many more millions of people use test strips but the cost still remains high for the most part as for insulin, and access is restricted.

17

Melitta, it's a lot like the reason for the housing/mortgage disaster. Back when our parents bought a house, they had to prove that they were able to pay back the loan. The bank that issued the mortgage hung on to the loan until it was paid off. Then mortgages became commodities to be bought and sold. I know that when I bought my house in 2011, in six months it was "sold" to another bank! That practice led to their being almost only one criteria to buy a house: A Pulse. The issuing bank really didn't have a reason to care about whether or not you could pay them back - it wasn't going to be their problem. Just like health coverage. As you said Melitta, people change coverage often - especially if it is through an employer.

That said, since most will be Medicare's "problem" you'd think Medicare would want PWD's to be as healthy as possible (i.e. as low cost to cover as possible).

18

Natalie, you are so right. And from what I understand the weight issue and type 2 are a chicken and egg thing - which causes which. I know of no other medical situation or condition for which it is considered "okay" to blame the patient. As I've said before, like the interviewee from the AIDS community said, we need to take pages from their playbook.

This morning I am particularly up in arms because there was another article from Dr Oz on diabetes prevention/reversal. Rather bogus. in my opinion and yet that's where people (the general public) get their info. I guess if we were slim type 2 (and there are many of them as well) we could be "undercover" type 2 and no one would notice and thus no one would say anything to us.

19
Why this Stonehenge attitude pervades this disease ( type 1 and type 2) totally escapes me.
Not me. It's clear as distilled water.

It's really pretty simple, and can be summed up in three words: Cost/benefit analysis. Something we all do, every day, constantly.

This analysis comes out, understandably, far different for a PWD regarding treating diabetes, than it does for a non-PWD regarding treating diabetes.

Simply put, the rest of society is not willing to spend the enormous resources necessary to aggressively manage diabetes and reduce serious complications, when current management practices certainly appear adequate to the non-PWD public.

What do they experience when they run across a diabetic? Someone who looks fine, with the treatment they're getting. Someone who, more often than not, is relatively dismissive of their disease (T2), or forcefully adamant that they're not disabled in any way, can do anything a non-PWD can do, and are not on death's door (many if not most T1s, and a lot of T2s).

So, what would you think if that same person then said, "but I'd like you to contribute to $10-15,000 in expensive gadgets, insulins, etc. so I can get my a1c ("whats that?") down from 7 to 6"?

About the same someone with psoriasis coming to me with the same sort of demand.

I understand that some may bristle at this rather frank, depressing post. I don't say any of it to criticize us, the PWD community. Rather, I'm trying to give some perspective from the other side, and be very up front about it.

Shaving a bit off a1c's, reducing complications for a portion of the portion of the PWD population that will get serious complications just doesn't win with the public when juxtaposed with the cost.

This was, tangentially, part of the point of my earlier, wet-blanket post. The public will take notice and get interested when a credible body of information becomes available directly comparing the cost differential between more expended up-front and less later on, vs. less up-front and more later on. When it can be shown that intensive management + reduced complications is substantially cheaper than lax management + current complication rates, we have a strong argument.

As I said before, we just don't have the data to make that case, and I can't really say that it's even true. I just don't know.

Finally, as cold and calculating as this may be, it's what the bean counters will do in making this analysis: The Time-Value-of-Money (TVM) must also be factored in to this. Even if the raw numbers come out in favor of strong early intervention, taking those same funds and investing/growing them over 3-4 decades may yield a net surplus after paying for treating the complications. In this case, guess what decision will be made?

The bottom line is this: As long as one is depending on someone else to pay for things for them, that other party will have a say in how their money gets spent, and it is guaranteed you won't agree with some, probably the majority of the decisions the benefactor makes.

20

Artwoman, I've participated in several discussion here about how poorly T2's are treated by the general public, and their gross misconceptions.

I have more sympathy for my T1 brothers and sisters than my T2's, because you have to experience being treated like a T2, just compounding the misunderstanding and misplaced judgement.

It is what it is, though, and it's not likely to change much. Despite the rise of T2 diabetes over the past 50 years, it's still a tiny part of the population (about 19 in 20 do not have it), so most people are not going to get educated.

I mean, how much do you know about ostomies? Did you know there are around 100,000 performed each year? That there are millions of fellow americans walking around with colostomy bags? What do you know about their lives, difficulties, alternatives to managing the situation, possible or available technology, etc.?

Me? Nothing -- at all -- until I did a cursory search as I was writing this post. In fact, it was surprising to me to learn how many people are out there with a bag. Yet, we hear nothing about it.

Do I think there are much better ways to manage this condition, with technology, were cost no concern? You bet. I also bet the public isn't interested in paying for it.