Samantha Walsh
Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.
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How often do you need to ration your insulin supplies because you’re concerned you could not afford to use it as prescribed? If you're comfortable share more about your experience in the comments. Cancel reply
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Actually, was trying to answer the previous question. My real answer to this one is never, not sometimes.
I am comfortable with insulin supply because I live in Italy, and the National Health System provides all requested insulin, free of charge. I wonder how Americans can accept that their government does not care about their health, leaving the problem to personal income issues.
Gustavo – you do have a point. In America, it is all about the Benjamins. But some of us think that socialized medicine is not as good as pay as you go, that choice is better. Of course, choice is better only if you can afford to make your own choices. As always, with everything, poor people lose.
As an American, I very often wonder the same thing.
I have asked myself the same question many times, living in the US but coming from Sweden. It is the mighty $$ that rules here. Noone makes a dime if you are healthy!
@Gustavo Avitabile. Like your good self, sir, I live in a country that has a National Health System, the UK.
It saddens me that on two occasions I’ve had friends of, and family members email me to let me know that their loved one has died due to not being able to afford insulin. I, too, think along similar lines as your good self with regard to the United States not valuing the health of their own citizens.
I put in rarely, because I forgot some of my supplies at home while on a trip. A buddy bailed me out. but for 5 days I had to ration. No, it was not a big deal, but it gave me such a feeling of what others have to do.
I said rarely because before November 2023 I never rationed because I got my insurance through my university employer and it was very good for insulin and test strips. A little less good for pump supplies. However going on Medicare was tricky and took a while to straighten things out and I did begin rationing test strips. As a result, my A 1C went from 6.4 to 6.8 which didn’t concern my doctors but did concern me. I am now switching to a CGM sensor Dexcom G7 but the sensor also seems to be more concerned with lows than highs. It seems to report my BG about 10 points lower than a finger stick. My educator and doctors point out that finger sticks are not 100% accurate either. Who knows. I’m beginning to feel like all of this is a crap shoot anyway.
I answered, “Never.” I interpreted this question as an insulin only question, not other supplies. I have always felt extremely lucky that I’ve always had some kind of health insurance since I’ve had diabetes. I have co-pays for insulin, but have never had to ration supplies.
On the other hand, if you’re talking about supplies, I am rationing blood test strips as we speak. Our “glorious” Medicare system will not cover blood test strips for me because I have a Continuous Glucose Monitoring (CGM) system, and a Control IQ system. I still need to do blood tests on occasion.
I get more strips than I need somehow even though I’m on Medicare and use CGM. CVS is bugging me right now to refill my test strips but I won’t do that right now because I already have plenty on hand. As I said above, I wonder if some suppliers misunderstand the rules. Is it possible that Medicare benefits vary from state to state? I’m in California.
Marty,
I was told several years ago by a person at Medicare that they would no longer cover my blood test supplies because I was on a hybrid system. I was also told by my pharmacist that they could not get approval from Medicare for my blood test prescription.
Have been extremely fortunate to have always had adequate insurance coverage for diabetic supplies
Ever since qualifying for Medicare a number of years ago, it’s been difficult to obtain an adequate amount of supplies to maintain my good control. My goal has been to keep my A1c in the low 6’s. Primarily, the difficulties arise because of Medicare “norms” for approving glucose test strips (before I began using a CGM in 2019) and the “norms” for infusion site changes. I have had Type 1 diabetes since 1976.
I went through repeated Medicare appeals of denials before obtaining approval (18 months after the initial denial) for the 8 test strips per day I had been using prior to Medicare. I undertook filing those appeals myself after my doctor and pharmacy got nowhere with Medicare. (Medicare’s “norm” is for 3 test strips per day for someone using insulin and one test strips per day for a non-insulin diabetic.) I was preparing my final (4th) Medicare appeal which required an appearance before a Medicare judge when I was advised that Medicare would cover my 8 test strips per day.
In the last few years, my insulin absorption on Day 3 of my insulin pump site becomes less effective, resulting in higher glucose readings despite repeated corrections. My endo’s case notes supporting the need to change infusion sites more frequently than every 3 days (Medicare’s “norm”) MUST be submitted to Medicare every 9 to 12 months for me to receive 45 infusion sets for changing sites every 2 days. I will try to make my sites last longer than 2 days but frequently require 50% more insulin on day 3 of a site in order to maintain control. I’ve programmed a “Day 3” profile in my Tandem t:slim pump (w/Control IQ) so the pump gives me more basal and bolus insulin when I need to use my site into Day 3. Medicare’s rigorous application of limitations does not provide for any malfunctioning infusion set due to bent cannula or occlusion or accidentally pulling it out. IMO, Medicare is “penny-wise and pound-foolish”. Managing my diabetes under Medicare has proven quite frustrating but I am determined to stay as healthy as I can.
I also need to change infusion sites every other day. My endo has to send case notes to my supplier every 90 days for me to get anything regardless of how much I need. Getting 45 sets every 90 days doesn’t create any special problem for me as long as my endo’s office remembers to write the prescription correctly. I wonder if some suppliers misunderstand Medicare requirements and “play it safe” with stringent limits to make sure they get paid.
I have the same issue with Medicare. Only I started getting infections at the site. Medicare assumes you can plan your site changes 90 days in advance. Penny wise dollar foolish
Now never. 20 years ago I’d run out before my refil was available all the time. I was blessed with an excellent pharmacist who always filled early tho and made sure I never ran out.
@Amanda Barras. An excellent pharmacist, ma’am. ‘One of a kind’!
I’m on MDI and use both basal & bolus insulins. The only reason I don’t need to ration is because I told both insulin manufacturers that I’m uninsured so that they’d provide discount vouchers.
When I didn’t have insurance and had to pay out of pocket, I would ration other things but never my insulin.
Never and I’m thankful and blessed for that. I do not take it for granted. I know at any time my life and circumstances can change.
I’m on a few T2D meds because I became insulin resistant, I as Lao bec as me morbidly obese from the insulin I was using (up to 297+ lbs). My insurance wouldn’t pay for the Victoza (GLP-1) which, with GoodRx/SingleCare is about $1,000 per month at the prescribed dose. I’ve been taking ½ doses and skipping Mondays and Thursdays and am able to approximate a therapeutic level throughout the month. I’m still able to lose some weight but my insulin demands are creeping back up.
T1D survival list
1. Insulin
2. Everything else
Taking less insulin than I need is not an option. I cannot afford my insulin so I got a job with insurance that makes it affordable. If I cannot find a job with the necessary insurance insulin manufactures offer discount cards for the under-insured. If I cannot afford insurance Lily, Novo Nordisk and Sanofi all started offering $35 per 30 day prescription pricing on insulin. If I cannot afford the $35 option they all offer a patient assistance programs that offer insulin for free. In my county a charitable group offers 30 days supply of insulin for $2. If I cannot afford the doctors appt. for the prescriptions all those programs require I can buy walmart branded Lily Humulin R and NPH from Walmart for about $25 per vial.
If you are a T1D please choose to stay alive by taking the insulin you need.
*If I cannot afford…
I can afford insulin. Apparently I should talk to my doctor about my inability to proofread.
Insulin is not a concern now as it was for all the many years I lacked insurance. In the late 70’s until 2005 I often reduced spending on food/ clothing/entertainment, etc. to have enough to pay for non-prescription insulin. In the mid-80’s I met a CDE who would make time for me during her lunch break, so she didn’t need to charge for an appointment. I was using MDI. She kept me supplied with insulin samples whenever I was running low and also made sure I was enrolled in the few pharma assistance programs available then. She definitely helped me survive hard times.
@Janis Senungetuk. A great CDE, ma’am. I’m truly glad that you found someone that was able to help you through difficult times.
I selected Other, but it could just have easily been Never. The reason being, I live in the UK (United Kingdom of Great Britain and Northern Ireland) where I don’t have to pay directly for insulin, or indeed, ANY of my diabetes-related supplies. These are ‘taken care of’ via our NHS (National Health Service), which is financed via direct taxation of all working people that earn above a certain amount.
I answered other because while for the last 12 months or so, I’ve not had to fight with my insurance company to even cover Novolog (Humalog allergy) more than 20% & leaving me to pay the rest.
2024 is the first year since 2018 that I’ve not had to pay more than $50 for a month of Novolog. I don’t know how Walmart has been able to this but I’m am grateful they did. Last year it was $57 for the same amount at the same place.
I purchase Novolin R to use as a backup for Novolog. I have been told that Novolin R is not for use in a pump, but it works.
There should be some sort of exchange to give unused products to others!
I have always kept a 6-month stockpile of insulin and syringes. I don’t understand why any T1D wouldn’t do this. I’ve lived in places where it wasn’t readily available (west coast of Africa, Caribbean) so I’ve learned to build a rotating stockpile. I request prescriptions that are slightly higher than my daily use; over time, the stockpile builds.
Oops I thought this was a different question. I should have answered Never. Cost of my insulin is not a big factor in my life.
Insulin no. CGM yes.
I have Medicare. There are times though, that supplies are not delivered on time by suppliers. For instance, Dexcom paid to overnight a transmitter (had none for G6) and FedEx decided otherwise. I’m without my cgm now for four days.
As I live in the UK and we have, for now, the NHS I have never in the 52 years I have had T1d had to pay for insulin or any supplies necessary for controlling diabetes. Or any investigations regarding this or anything at all in fact.
I know how lucky we are and wish everyone could say this too.
I’ve always worked more than 45-50 hours a week. Several yards, small repairs, hauling things along with my job. Some for my rescues (now I volunteer weekly), some for medical supplies. A year ago dropped insurance and went “pay as you go,” and retired. CGM through GoodRX, insulin/meds through Amazon and Wal-Mart in generics: actually cheaper than my copay was.
But I limited other things (dropped cable for an antenna, used a fan and opened/closed windows and reduced the central air and heat, with a garden really reduced buying vegetables.
(now in the VA system, things are really reduced)