26 Comments
Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin?
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Thank you! I have never needed to do so. So many things in life we take for granted, just read a book written a century or more ago or visit the hospital.
We have a huge conflict of interest between diabetic health, insurance allocation and insulin pricing. Long ago insulin pricing was not a big issue but given big Pharma greed everyone is concerned. Insurance companies now force doctors to write prescriptions with the daily insulin use on a per patient basis. As a result if you make any kind of mistake, have a sickness and/or a need to use more insulin you will get squeezed on when you can get your next available prescription. it is incredibly unfair on the patient, also unrealistic.
Shameful to ever be put in this position in the first place and why as a patient we are forced to have these contingency plans to stay alive. I am a firm advocate of making insulin and cgm supplies OTC and prescription-free much like is done in other countries outside the U.S.
I was an undergraduate about 45 years ago. What a mess. Don’t ever do it – we have ways today to help you get insulin. I promise just reach out
The copay for a two-month supply of Tresciba and Humologue is over $500, down from $727 a few years ago, due to recent legislation. I don’t eat lunch, which saves a third bolus and lowers Tresciba by a third, so I saved some money and lost 25 lbs, a win/win?
I have never rationed insulin, however my T1D husband and I shared the Lantus vial so we didn’t throw half of it away before it got impotent. That worked well; we didn’t share syringes or Humalog. It was a conservative way of not wasting insulin.
My T1D wife and I did the same thing!
I chose other because I don’t use less than I need, but try to need less insulin by changing my diet. It allows me to stockpile a bit just in case I’m in a prolonged bureaucratic runaround with providers, suppliers, insurance companies, and pharmacies.
It’s not exactly rationing, but as a pump user, I need to change the pump every 3 days. I try hard not to leave much or any extra in the pump when it is time to swap out.
Years ago Omnipod would fail shortly after activating full of insulin. Insulet refused to replace the wasted insulin. Went to 2 meals a day to reduce the amount of insulin make it last.
Omnipod doesn’t tell you this (they probably cannot for liability reasons) but if your Pod died shortly (or anytime after starting it) you can extract most of the remaining insulin out of the Pod using the syringe from your next Pod kit
Yes, I have been since starting on Medicare. As Novolog is not formulary in the state I live in. I have an exception for coverage, however my portion of it is $800+ a month; sorry on a fixed income no one can afford that.
My endo and I have been waiting for 6 month’s to hear from Nova Nordisc to see if I’m approved for free Novolog.
The results are true for T1s subscribing to td1exchange. to. Don’t think that any generalizations should be drawn from the results.
I have chosen not to eat as many carbs to reduce my insulin need.
Never rationed myself, but I have supplied insulin out of my backup stash to a T1 friend who had maxed out their pharmaceutical allotment and couldn’t afford paying the OTC price of ~$300.
I rationed insulin when in Central America, when the heat ruined most of my supply during a power outage….some countries aren’t as lucky as the USA w/ insulins, supplies and handling conditions…
I am very lucky to have good insurance that has a $30 copay for a 3 month supply of insulin. My doctor also writes my prescription for an extra vial in case of greater needs or accidents. (I once had the bottom of a vial blow out when I injected air into it.) I have been able to build up a reserve, so I dont have to make the decision to ration.
In my case, yes, recently. But on a very, very short-term basis. If I am away from home doing errands with only a few units remaining, I will sometimes correct less or bolus less in order to keep SOME basal insulin going until I can get home and recharge the pump. ¯\_( ͡❛ ͜ʖ ͡❛)_/¯
No, I have never rationed. However I have had to buy Regular and NPH over the counter without a Rx to get me by when I ran out of prescribed insulin. Had that not been an option, then yes, I would have had to ration or go to hospital or doctors to seek emergency help.
Out of the commentaries, it seems like people have rationed insulin at times for reasons other than availability or cost. I’m not sure what this survey try to address: cost, availability or pump problems?
I’ve been fortunate to always have enough insulin to cover my needs . Now a day being on a pump guarantees me Medicare coverage for insulin and my secondary insurance covers the rest of the deductible.
The insurance plan I had before Obama cover my 3 month supply for just $10. How great!!! I know that change in insurance cover helped some people but it put me at a disadvantage. After struggling with different plans for a while I was able to get a plan that suits me.
Also it’s important that the prescriber writes the prescription to cover the waste that some pumps have by deciding an infusion set change is needed when there’s still insulin in the cartridge.
No- but I have been fortunate. Many others have not.
I agree with Tod Herman. I extract as much insulin out of my old pod using the syringe from the new pod and then in my insulin vial it goes. Never had a problem doing that, so I will continue. Just glad to hear someone else does that.
Mail order screw-ups made me ration Lantus. I thought that I had a standing order for refills, but found out I needed a new Rx.
My current Insurance coverage is generous and I don’t need to ration. However, a personal “ooops” recently caused me to ration my Tresiba. We left on a Thursday morning for a long weekend. That evening, I saw how small an amount was left in the pen. Instead of my usual 8 units, I lowered it to 6, and had 6 available to me each of the next three nights, until we left for home on Monday morning. Lesson learned: don’t just grab the pen….LOOK at it!
I have never had to ration my insulin. I feel very sorry for those that do this as they put their health at risk. Most endocrine offices have samples available. So, for anyone reading this who is rationing their med(s), talk to your doctor to see if they can help you get what you need. Ask about samples – one or two pens can help get you through!
I ration insulin at the end of most years (because I hit the insurance “donut hole” and want to wait to pay the extra money towards my deductible in the new year. It’s not a huge problem, I just cut back on my carbs to extend the insulin I have left.