The diabetes stash, market realities force us


#1

Continuing the discussion from Experts Please Guide : Dawn Phenomenon:

@DrBB made a comment in the linked thread that raised a topic that I’ve long thought about but held back from writing about it for various reasons. The issue is using the current US insurance-based system to accumulate a surplus of insulin and all the supplies related to dosing insulin to protect us from the very real threat of losing access to that essential continuing stream of supplies.

I’ve read assertions by some that this is insurance fraud. I think that’s rather harsh and does not acknowledge the reality we insulin users face. If we don’t take insulin, we die. It’s a cold hard truth. Losing access to that life enabling liquid is an existential threat. It is equivalent to preventing someone from breathing. The thought of running out of insulin engages the primitive emotions of very old parts of the brain.

In an ideal world, we would all be assured that we will always have access to insulin and the supplies that support it. Cost, employment, insurance status, weather events, age or any other factor could all cause the withdrawal of this access. But that is not the system we live with.

We are forced to deal with the crazy context of an insurance-based system that controls access to the precious liquid of insulin. Insurance companies are constantly trying to optimize their rules so as to serve the only constituency that they value, their shareholders and the senior managers who serve the shareholders. Profit is their single focus and they don’t care one whit about us.

Their constant revision of their medicine formularies is one example of how their business decisions impact us. They seem to think that adjusting their list of medicines that they make economically available to their insureds is a completely rational action and has no impact on their customers. They think the various insulin formulations are medically equivalent commodities and may be swapped into and out of the formulary list with no affect on patients.

What planet are these business thinkers on? They obviously have not lived one day struggling to substitute the exquisitely sensitive healthy glucose metabolism with a manual one. We all don’t respond the same way to all the so-called formulary equivalent medications. I am, for example, allergic to Novolog insulin.

They’ve played the same game with glucose test strips. They think all test strips are qualitatively the same and we should just accept their business decisions. Now we know that there is a quality variation with test strips. We use the data from the test strips to dose insulin and also to calibrate our continuous glucose monitors. Reasonably accurate test strips are essential to our health and quality of life.

What if we lose our job? What if a weather event or a wild fire threatens our diabetes supplies? What if our suppliers unilaterally decides that we no longer need five test strips per day and three is good enough? CVS, by the way, just implemented this policy for its Medicare customers.

The point I’m trying to make is this. We, as insulin users, see an insurance system that seems highly unstable, capricious, and nerve-wracking. We are kept off-balance and must accept whatever the system decides is best for us.

Accumulating a surplus of essential diabetes supplies is the antidote for all this business-driven insanity. Having a several month supply on your shelves, under your control removes much of the uncertainty that the existing insurance system creates.

In an ideal world, I’d make an offer to the insurance companies regarding patient stock-piling. Guarantee us that you will never threaten our access to insulin and related supplies and then we’ll cooperate and adjust our requested quantities to better reflect actual usage. If we experience an increased need for insulin, we expect that the insurance company would not question or delay meeting that increased need.

But, I see that situation, given the actions of the health insurance market in the US, as pure fantasy. I have no faith, at all, that insurance companies and pharmacy benefit managers, have any moral conscience. They have one singular focus: profits. As long as this situation remains a reality, I will continue to choose to stock-pile.

To be fair, I realize that some members of the patient population participate in unethical behavior. They get their doctors to over-prescribe test strips and then sell that excess on the gray market for cash. I’ve never done that. Like @DrBB, I delay periodic diabetes supply orders so that I can keep the level of my stash reasonable.

It’s darn hard to make moral choices when you’re dealing with immoral and corrupt market players.


#2

I have brought up insurance fraud.

Although your posts does not call anybody out, if you are referring to me, then there was a misunderstanding of my posts.

I do not consider what @DrBB does to be insurance fraud. He has a personal supply which by his account is moderate. I think he said a couple months worth. It would be very hard to argue that is excessive. Some could more easily argue he might want a few months more. In any event, this clearly is all for personal use. There is no indication nor any reason to think he would ever be selling this on ebay or medwow or any of the other related site. In fact, he has specifically stated this is intended for his own personal use when some factor outside his current control interferes with his ability to obtain his supplies in a timely fashion.

This is not insurance fraud.

On the other hand, there are plenty of examples of insurance fraud running rampant if one goes on sites such as those mentioned.

Somebody offering hundreds of boxes of sensors and insulin pump supplies or test strips who is clearly not a legitimate distributor almost surely is committing insurance fraud. It is possible there is another explanation but the more likely scenario is insurance fraud.

There is a clear distinction between the two cases.

Insurance fraud really does hurt everybody. Actual insurance fraud cases do get indictments all the time.

Building up a reasonable personal supply for possible supply interruptions is not insurance fraud. No prosecutor will ask for an indictment on this.

Disclaimer. I have significant experience dealing with many types of Fraud at the Federal Level. And not on the side of the perp.


#3

No, I did not have you specifically in mind. I’ve seen insurance fraud raised by many commenters in this forum as well as others.

I’m glad to read that you see a distinction between those of us who accumulate a surplus to assure continuity of access to essential medical supplies versus those who have turned that accumulation into a virtual cottage industry.

I suspect, however, that the insurance companies would likely see our activity as a violation of their legal relationship with us, even if they don’t choose to prosecute. I still feel that I’m in a legal gray zone and I resent that the system has deliberately placed me in such a situation.

Thank-you for your thoughtful reply!


#4

Repeating what I said on the original thread:

It’s not like you’re trying to cheat anyone, it’s that you’re trying to stay alive, and a certain safety margin is a reasonable part of doing that. Not to mention that if we weren’t targets for massive, blatant price-gouging none of this would be an issue at all. If someone’s cheating in this deal, it sure as hell isn’t us.

I didn’t realize myself how strongly I felt about this until I started writing the comment, which is why it sounds a little vehement, but I wouldn’t retract any of it.


#5

As I said in my post, I’ve held back from writing about this issue for some time.

Your comment, however, prodded me to make my post. I very much agree with your sentiment. The market players, especially the insurance companies and pharmacy benefit managers, are responsible for this mess. We, as people who didn’t choose diabetes or this market context, are simply responding rationally to this reality.


#6

There is absolutely no comparison between somebody having a personal supply cushion and criminal insurance fraud.

Insurance fraud is not minor. Indictments for insurance fraud easily range from the Millions of Dollars (US) to Hundreds of Millions of Dollars (US) for a single case.

A moderate personal supply and insurance fraud are very simply two completely different topics.

Insurance companies are on the front line for detecting this criminal behavior.

Left unchecked and to their own devices, I can assure you that criminals would bleed the entire medical system dry without a second look backwards.

The National Heath Care Anti-Fraud Association (http://www.nhcaa.org/) estimates conservatively that health care fraud costs the nation about $68 billion annually — about 3 percent of the nation’s $2.26 trillion in health care spending. Other estimates range as high as 10 percent of annual health care expenditure, or $230 billion.

https://www.bcbsm.com/health-care-fraud/fraud-statistics.html


#7

I’m in Canada so don’t have to worry about losing access to healthcare if I lost my job. I think it’s just common sense to have some extra medications/supplies on hand when you rely on them to stay alive and/or stay functional. Natural disasters can happen at any time to anyone. I didn’t used to keep anything more than a few days on hand until I read that it can take months to restore even basic infrastructure like power, water supply, and roads after a major earthquake in a highly developed country. After that, I started stashing more in my earthquake kit!


#8

The rest of the developed world has kindly showed us the way, but somehow we just can’t deal with the fact that our system of health care is not the best in the world.

I am fortunate to be covered by Medicare. That makes me relatively secure in my access to health care.

We share a common earthquake fault line, the Cascadia Subduction Zone. It affects the North American west coast from British Columbia in the north down to northern California.

I assembled a diabetes “go-bag” many months ago and keep it near my door. Your comment reminds me that I need to regularly review the contents and refresh as needed.


Curious about Dexcom and Omnipod supplies
#9

Medicare has tightened the screws on refills of controlled substances. Can you believe that even Ambien is considered “controlled”? sigh. I have to wait until just 2 days before a 30-day rx has been filled. We used to be able to refill rx’s as the local pharmacies 5 days ahead of time. Regarding mail order 90-day rx’s, I don’t know how early we are allowed to refill. I hope they aren’t making it impossible to keep enough vital meds on hand. D@mn regulations! I suppose private insurance also has annoying restrictions. Sudafed is doled out in quantities of 20 around here (thanks to the drug labs that use it) so my wife has to go to the pharmacy to sign for the OTC item every 10 days. Thank you, government. It’s a hassle to get an OTC pill because of drug labs. My wife can’t get enough pain meds because of the war on opiods. Thanks again, big government. aaargh.

Getting “ahead” on the above items, is nigh impossible.


#10

Sometimes the Medicare bureaucracy can irritate but I’m grateful for the health care access it gives me. I agree that the “just-in-time” method would be great if they never missed their deadline.


#11

Same applies on my private insurance to anything with a fixed daily dosage. You can sometimes get an “advance” if there has been a problem of some kind but they are basically one day, one dose, that’s it. The thing with insulin is that other than basal there isn’t a fixed dose; it’s necessarily an estimate, so we estimate on the high side.

The other stuff—non-pharmaceuticals like sensors, reservoirs, infusion sets etc. are a different story of course. Sensors you can build up a buffer by rolling over sessions, but other than that the pump supplies are mostly locked in, with a little wiggle-room for pullouts and bad insertions in the case of the pump stuff.


#12

I had a lovely pharmacist who asked why I needed to buy two vials of insulin. I told him, on occasion I get bubbles in the infusion set tubing and have to get rid of the insulin in the sink. To which he replied that bubbles in the tubing means I am getting contaminated. To which I responded by leaving that pharmacy…:slight_smile:


#13

Gosh, I remember my Mom saying don’t turn down a prescription even though you might not need it, because sometime you might? I think the first time I was pretty young, a teenager I think, it was said to me when I had borrowed codeine for her for a toothache and then had told her they offered me a prescription for it when I went to the dentist. I never thought that I should have gotten it so I could give her back her stash. So that’s when I learned to keep a stash of certain things because of not easily being able to go in to the doctor or dentist, at nights or weekends. No urgent cares back then.

This hit home when I first went on Lantus and I think it was the second or third bottle and I dropped it! I didn’t know I was type 1 yet and I would have been in the honeymoon phase but I knew my blood sugar would shoot up without it and the insurance wouldn’t cover another bottle yet. At that time it cost about a hundred dollars a bottle. I know it was my fault for dropping it, not the insurance. But that was eye opening!

But when you’re a type 1, without it you will die. Sometimes even within days. The way my liver likes to make glucose, I would be one of the sooner ones! Even when I fast, my basal needs are 28 units right now. I’ve been known to shoot up to over 300 in the morning with my dawn phenomenon alone. So yea, I have a feeling my death would be pretty quick without insulin.

Given that, it is a necessity to have a stash if something goes wrong. The worse case scenario? How many days were some of the Katrina people stuck without help?
So yea, it should be a given that, up front you should be allowed a stash, at least a 2 week emergency supply.

So that opens the door to what other medication is life or death and how that is decided, which is probably a door they don’t want to open. But not too many things are so absolute as a type 1 and the need for insulin. I believe they have acknowledged that with the ability to get some insulin over the counter without a prescription.


#14

You can thank the 2001 Patriot Act for that. The intention was to limit the quantities available for purchase in order to curb methamphetamine production since its a key ingredient in its manufacturing.

I haven’t ever really been successful in getting a stash other than a couple week’s worth.


#15

No, @Tim35 , it wasn’t you. There was a Troll. They made one inflammatory comment and then dissipated into the ether. Never seen her before. Never seen her since.

It is interesting (and helpful) that all of our threads are becoming financial threads this time of year. Desperation/frustration abounds prior to meeting deductibles.

Trolls always make threats with the long arm of the law…Come and get some, Trolls! I’m here.


#16

You don’t see the Ambien walrus? I have never taken Ambien. But, I believe the walrus exists.


#17

Bobby Fuller, the correct version! Also the ultimate ear-worm killer, IMO. Some horrible bubblegum tune stuck in your head? Cleanse with I Fought the Law! Just a couple of viewings are usually sufficient. Three out of four psychiatrists recommend it for even the most stubborn earworms!

Some object that you end up with IFTL stuck in your head, but they say that like it’s a bad thing.


#18

The dancing girls are great. Perhaps even on par with the dancing girls from “These boots are made for walkin’.”

I swear to god, if we ever get a bill in front of the senate, I’ll get a bunch of diabetic dancing girls to dance like that on the capitol steps.


#19

Lol I forgot about the days of the gogo girls!!! This was great! Made me smile, Thank You!


#20

A practical thing to do is write your congressman and complain about the practice. It should be eliminated by rewriting patent law, and enforce it.