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Do you feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life?
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I’m fortunate to have good insurance through my husband’s employer. However, I met several T1D and T2Ds at an event this weekend who were struggling and couldn’t get insurance to cover and/or couldn’t afford a CGM. 💔 Anyone have any advice on this? Appreciate it!
1. Get then involved in working for a version of Medicare for All in their state. They can also get involved in the national Medicare for All movement. 2. With the shortage of workers, tell them to look to the Federal Government for a job. Even as just a clerk-typist I got excellent medical coverage when working full time for Small Business Administration. Familiarity with Windows OS and data input is probably a useful skill in any gov agency. Or look to city, state or county governments for openings.
Not happy since switching from pump to MDI as required to pay co pay for insulin. Also pay for Iport, needles etc. but was my choice and am happy so far. Not being attached to a pump is freeing. Even omnipod gave me problems and was cost prohibitive on Medicare. Am waiting for InPen so I can follow my numbers on their app like a pump.
I have an InPen and think it’s great! T1D for almost nine years and MDI the whole time. The InPen really makes a difference! I hope you can get one soon. I pay only $35/ year. In February, I turn 65, we’ll see what happens then with the cost.
I answered “Sometimes”. I am blessed with insurance that covers 80% of my insulin pump supplies and a $60 copay for 90day supply for insulin. However, that money has to be available, so we plan our purchases. My husband also has high medical expenses. I am approaching Medicare age in a few years, so it worries me the cost will skyrocket.
I have a kaiser plan through Medicare and I pay 20% of everything I get. It’s ok. Better than being dead i suppose. Although sometimes………..
I’ve been so fortunate. I’ve always had fantastic insurance coverage. It’s even better for me now that I have original Medicare and a supplement.
If I didn’t have to pay higher insurance premiums, plus multiple prescriptions and dr visit copays that otherwise healthy people wouldn’t need, I’d have a new car. As it is, all those things combine average to a couple hundred dollars more than a new car payment would be each month. I keep hoping, but it’s been 7 years and I still haven’t been able to make it happen. Frustrating to say the least.
I feel very fortunate to have good insurance coverage at this stage in my life (age 49). However, when I was in my early 20’s and just starting out, I had crappy insurance but my father was also T1D so he would give me a box of test strips or a vial of insulin from his supply when I was low on cash. I was always grateful for that.
My husband is disabled so has been unable to work the last 20 years, and I make a modest income. The cost of healthcare has impacted our lives in these ways.
Moved from our lovely home to a two family flat in the city so we get some additional income. No cable/sati lite, Netflix or the like – just plain tv, my brother has us on his family plan for phone, no high speed internet, we do not travel. Our one splurge is to eat out lunch on Saturday, lunch is more reasonable.
With those “sacrifices” I have been able to have a pump, CGM and afford all our care.
We are very content and do not need much to enjoy our lives so living modestly is really not a problem. I feel very fortunate as others have much greater struggles!
Does your county or city library offer free computer access?
While I answered “no”, my insurance covers nearly all costs, I know several people that aren’t covered well or whose insurance does not cover many costs. They get stretched pretty well and there’s definitely financial impacts!
The cost of pump and CGM supplies has definitely impacted my financial health—especially since my husband was permanently laid off because of the pandemic. We could no longer afford our great insurance and my copays for insulin, pump, and CGM supplies are now $300/month. On 1/3 less salary, we are struggling to make it to retirement while watching our savings melt away.
I answered yes.
I owned a small business in Canada and have no coverage. I’ve tried to get coverage but due to an existing condition I have always been rejected.
I feel very lucky to have original Medicare with a supplement that covers copays and deductibles for insulin and diabetes supplies. My premiums aren’t cheap, of course, but I’m still very grateful to be free from worry about how to cover these expenses.
I answered sometimes. With federal BC/BS, my co-pays aren’t too awful. I have been keeping track on T1D expenditures for 2022 since I turn 65 in February and could choose straight Medicare or keep the Federal insurance. $ 1500 so far and I don’t have a pump, only MDI and InPen, and Dexcom CGM. Getting an OP5 would increase costs significantly.
I have not had to make sacrifices in other area of my life because of the financial costs of my T1D. The deductibles and copays are within my financial means. I have a Medicare, and a “mediocre” secondary insurance. But it keeps my head above water.
Sorry, I need to do a better job proof reading my statements.
I understand in Europe diabetes expenses are covered. I have spent 20 years at the company I work for, due to their health coverage. I’ve got to have that, and can’t entertain the possibility of retirement. I’m very lucky to have help, as my parents had none when they raised me. We only took one vacation that I can remember. I do wish my health insurance through work covered CGMs though. They don’t recognize them as being as important as a pump for life-saving, life-extending, complication-less-likely treatment. At ~$120 every ten days I can’t afford to CGM!
If I may, I would suggest that you keep after your insurance company about the CGM. Many insurances cover CGM’s. My insurance company wouldn’t cover a CGM until I broke my ankle and lost a month from work from a low sugar fall. Then, they decided the CGM was worth it. I wish you good luck.
I am looking forward to the new legislation that caps out of pocket costs for Medicare part D and Insulin. Some years NY total medical costs have exceeded $15,000.
That goes without saying if I didn’t have to spend the amount of money on my T1D it would definitely help in all aspects of the word.
I have always found that and after 52 years with T1, it has taught me to be very economicial with my costs on every aspect of spending for
Medicare and Anthem plan F cover it all except part D,which now omnipod falls under. To that I will not be trying the Omni when pumps are fully covered under Part B. Trying to simplify my life this doesn’t help.
I selected sometimes. While on private insurance at $1,500/ month, it was harder. When we stepped onto medicare with Anthem suplement and part D, our health care costs dropped to 1/3 of that. So, it depends on your prospective on if Medicare is expensive or not. Additionally, the mailorder Part D we have is a fraction of over the counter Rx costs.
It is not just the cost of the insulin, glucose tabs, pump supplies and test strips, it is also the increased cost associated with eating healthier (whole foods & gluten free) that makes me scrimp on clothes, electronics, vacations etc… Not that I care, because I really don’t need the latest apple phone or a new car.
Absofreakinglutely!!!!!!! Sensors and pump supplies are outrageously expensive!!
Definitely, much of the pharmacy costs are taken care of the government but it’s much more, days that you can’t because of diabetes, to sign an insurance I pay at least the double amount compared to non diabetics and I can’t take a life insurance. The costs for treating lows, eating regularly, to have technical devices that is necessary for getting my diabetes optimized, doctors appointment, sick days etc
YES! The impact of T1D expenses has made a tremendous difference in available choices over the past 67 years. Now at 76, the struggle has become even harder as savings are depleted from skyrocketing increases in living expenses in addition to the continual medical costs.
Medicare covers all the costs for pump users . I also have a good supplemental plan that covers CGM use, it is $250/month
Although I answered “No” it SHOULD BE ‘Not Applicable’ as I live in the UK and our NHS (National Health Service) pays for all of my diabetes costs. (The NHS is funded via direct taxation of all working people.)
I said No. I have worked in higher Ed for a college that pays for everything but my pump and supplies (I pay 20%). I have no children – I’m not sure I can say I’m fortunate for that – just didn’t work out for me. I’ve been fortunate to be able to save a lot of my salary. My husband and I don’t overspend for things.
I answered No, but it is a constant thought of myself and my spouse, so if anything, maybe a sacrifice in a feeling of ease.
I remember in my early twenties making sacrifices in many areas before qualifying for disability for epilepsy. Trying to save money in areas that would take you back a century at least. I still couldn’t afford medication and was thankfully given the most inexpensive phenobarbital from my neurologist who saw me for free.
I am very grateful now with the insurance my husband has and also to have had the previous experience. I can empathize with others but am grateful not to live in areas of the world who lack doctors almost completely.
Most costs covered by UK National Health Service
I “downsized” this last year (sold a house moved into an apt off my brother’s garage) not wholly for financial reasons. So I’m much better off but dropped the CGM supplies due to costs for 3 years. Still, I joke I’m wearing my car.
Absolutely, because these costs add up to a significant amount of the monthly budget. Insurance premiums are higher (always have to choose a more expensive plan), and monthly costs other than premiums are higher (more doctor’s visits, lots of prescription costs). Unexpected costs are inevitable given the delays and restrictions we are subjected to by insurance/PBM and DME suppliers—which have resulted in me paying full price out of pocket twice this year for pump supplies, once for insulin, and once for blood work despite planning ahead, knowing how to navigate insurance, and having an ACA Gold tier plan in New York with a monthly premium that is just under $1,000/month.
I am very fortunate to have insurance that covers most of my diabetes supplies, so my answer was no.
No. I’m very fortunate that all my expenses are covered by Medicare Part “B” and my secondary insurance, Federal Employee Program, Blue Cross Blue Shield.
Thankfully my employer does a good job of keeping my costs low through Rx and insurance plans. When I was younger though, I had a very strict budget where I broke my pump supply payments into small chunks. Otherwise I could not afford rent or geroceries.
It has, especially when money is tight, if you know what I mean.