Government shutdown leads to insulin rationing

#62

Been there and done that for over 30 years … until I hit perimenopause and my hormones went unpredictable in a big way. You haven’t lived until you have had sudden BG spikes and drops while on a Humulin R and N regimen. I had several pretty severe hypos in 2015-2017, until I got a CGM and pump. It’s definitely more than I could afford on my own, and as my hormones have gotten even less predictable in the last several months, I’m not sure just how well I would survive if I had to go back.
Better than death? Yes. But unpredictable enough to screw up my job performance and other aspects of life.

#63

@BeckyB, you need backup. A world of pain is waiting for you without it. If possible, describe the amount of insulin you use as WAY more than you actually do use. This is easy if you use sliding scale. When they ask you how much you use, if you actually use 30 units per day, say that you use 60 units per day. That will allow you to get insurance coverage before you run out and start building some buffer.

I’m kinda confused how your getting by without buffer. Haven’t you ever been left without insulin and in a dire state?

If you can’t swing this, I would highly recommend just paying out of pocket for a backup vial. Before I had a healthy buffer, I ended up paying out of pocket all the time. Backup insulin is a way to avoid paying out of pocket in an emergency. Its critical. I don’t know how you are getting by without it. I require backup insulin all the time.

#64

What really sucks is that this happened in January where no one has met their deductible. Super inconvenient timing. But, on the upside, I would have expected people to have a fresh stockpile since most people rush to stockpile in December before deductibles reset.

#65

I’m a single parent and a teacher with a kid in college and another on the way to college. I don’t have a ton of money just lying around to get extra insulin. I have pens as backup and my insurance company only allows me 30 days at a time. The time in between reviving my next shipment and a pod change is only a day and that’s if one of my pods doesn’t fail (yes I know they replace them). I’ve had to switch to MDI when there’s been a delivery issue more than a few times. I eat low carb so that I’m using a lot less insulin and that’s how I ration it. Fortunately I do have other friends with type 1 who’ve helped me out on occasion. The smugness that went with the original post pissed me off as if (I) am somehow doing something wrong because I don’t have the finances to have a stockpile. I do the best I can to make ends meet and work several other jobs throughout the year to take care of my family and keep a roof over my head.

#66

Maybe I’m blind, but I can’t find the smugness in the OP that you have mentioned. Care to quote it for me?

#67

My apologies, it was in reference to Sam19’s response.

#68

ah, I see what you mean.

#69

A substantial number (40%) of Americans are unable to pay for a $400 emergency expense. So suddenly losing one’s entire income (or even more worrisome for some, federal benefits for low income folks that are key components of monthly budgets) is simply not affordable whatsoever for many, and even $50 for insulin could actually be prohibitive if income/other support stops, let alone all the other issues with suddenly switching insulin types (most people can’t suddenly get into their endo for help figuring that out either). Many people can barely obtain their insulin in normal situations anyway, so remove income and/or federal benefits, and they are screwed.

#70

That’s why you get a prescription for more than you actually use— so your insurance will pay for it. Also, might be worth investigating if your insurer provides 90 day scripts through their mail order program. Many do, and often copays are reduced as well.

Smugness? I’m trying to help. Never mind.

#71

Well, a thirty day backup is pretty good. I’m glad you have that. Limitations on PODS can be an issue, but somehow I got rid of that issue. Used to be a real problem, I remember. You aren’t required to eat low carb. I would stop reporting that you eat low carb to the Doc. You dont have to disclose exactly how much insulin you use. I would expect your doc to partner with you on that - just record in the paperwork to the pharmacy that you use a reasonable amount of insulin, not an extremely low amount from low carb.

I only meant to throw out the reminder to build stock pile if you want because I had lots of really big difficulties from not doing that and most have disappeared now that I have. It removes a lot of stress and its super easy to do. Worth it…for me any way. Not trying to attack. It just makes me nervous - the idea of living on the edge unnecessarily because I know how bad it is to not have any supplies when you need them. Best of luck to you. I recognize its a high stress issue not to have what you feel you need.

Just to be clear - your Doc, not the insurer dictates how much insulin you are allotted (At least in my case) because hes the one who writes the Rx to the pharmacy. Maybe we aren’t all communicating clear on this.

#72

Exactly. In my case my Fiasp script is written for 100u daily. My actual usage has been running about 50u. So after a few refills I have a pretty decent reserve. Once I have enough for a couple of months I space out my refills so I don’t run out of room in the fridge.

This practice recently came in handy when a friend on Medicare hit the Part D “donut hole” and was in a bit of a panic about how she was going to come up with the cash for her Novolog. I still have a Novolog stash from before I switched to Fiasp, so I could give her 4 vials and save her $1200. I also advised her to get her prescription adjusted up so she can build up a backup supply. Drs in my experience are usually ok with this, because if you run out for some reason it’s, y’know, death, which kinda ruins your whole day.

#73

Pretty much exactly our approach.

I am not looking for an excessive hoard (nothing implied on anybody who does) but want a reasonable cushion against interruptions in our supply chain (for whatever reason).

#74

Another approach I use (no implications directed at anyone) is to assume there will be problems with the first order of the new year both for supplies as well as drugs/insulin.

Normally, I will reorder when we reach a certain level of supplies remaining and/or insulin remaining (not counting backup stash for emergencies).

However as soon as the first of the year rolls around, I assume there will be a problem (of some sort) and place an order as soon as allowed. If it goes through - great. If a problem arises then I can start dealing with it.

#75

I kinda understand people’s confusion about this stuff because I know that I used to have LOTS of problems regarding. But, I think this community of gold star diabetics has enough resources to build a HOW TO reference so that no one is insulin rationing. Its such a serious issue that it kinda makes sense to address it. I think older, longer term diabetics have a responsibility to the newer and/or younger ones to put info out there so people don’t have to each individually learn this through horrible experiences. Lets address this. Its such a world of pain not to have insulin.

If you bowl 50 units per day, mark it 100 units. I would think any Doc would go along with that. If not, you might need a new one. https://www.youtube.com/watch?v=t_TdCs9GA4w

#76

My endo uses the phrase “Up to xxx units per day”, which is used is used determine number of vials.

This allows for the maximum daily usage, plus estimated amounts that are lost in the pump tubing, reservoir, accidental bottle breakage, etc.

#77

This makes perfect sense, but surprisingly some pharmacies take issue with it. My mail order service insists on an exact number of units per day, which of course is silly with insulin… but it is what it is. I can play their game.

#78

I’m trying to make a quick video on insulin options if you: 1.) Have no Rx; 2.) Have no insurance; 3.) Have (almost) no money; and, 4.) Have no time. Its a great refresher for me because I haven’t used NPH in a long time and some of the details, like that you need to roll it, are good to go over again. I also never have those details, in a pinch, about which states allow you to buy syringes without Rx and which don’t, so its useful for me to look it up the details.

Maybe one of you (or a few of you) could make one that helps go over the finer details about how to build a stock pile for the fancy insulins. It would be helpful, for me. I mean, I somehow built up a stock pile, but I’m not exactly sure about the all details you bring up.

I feel like this issue comes up all the time. It might be nice just to have all the details compiled in one place.

#79

I’ll consider it… it’s been well explored on this forum and FuD… I get the distinct impression that in this particular thread people aren’t actually looking for solutions and ideas though

#80

As @Sam19 says, I think there are some good threads on FUD about this.

I can take a look and probably link a couple that have great info.

#81

Here is a good one that seems tailored for this discussion.