Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
All the money I spend could have been invested or saved for something that would bring a long term value to myself or my family. In over 25 years I have spent, including my cost of insurance over $195,000. That’s what I have paid to stay alive for another 24 hours since I was diagnosed in 1997. If I could have put that in a retirement account instead…. even with the current downturn I would be in a way better retirement position since I am 9 years away from retirement today.
I’m currently disabled so I get full coverage for the first time in my life. In my 20’s and 30’s blood glucometer strips were super expensive. I couldn’t afford both strips and insulin so I’d only purchase insulin.
There are no financial costs associated with T1 Diabetes for myself as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where all of financial costs are covered by our NHS (National Health Service), which is financed via direct taxation of all working people.
That does NOT mean that we don’t have to make sacrifices in other areas of our lives. Having been retired on grounds of ill-health in 1990 and therefore requiring support from Government handouts, there are times when I’ve been admitted to hospital where it’s been found that I’ve been suffering with malnutrition. This is because we often have periods when we can’t even afford basic food necessities. (The only way that I’m able to use the internet is because one of our neighbours [neighbors] graciously allows me to ‘piggyback’ his internet connection.)
I can’t remember how long it’s been since we last went out for a meal; visit a pub; visit a museum or art gallery, etc. but it’s been well over 25 years now.
I don’t see how anyone with T1 can seriously answer “No” to this. My perception is just having to take insulin routinely, having to deal with injections, CGMs, pumps, insulin, and appointments, and meds forces “sacrifices” of some sort. That said, it’s how T1s “deal” or “handle” those impacts thats of consequence.
The question is specifically about the financial sacrifices, not the emotional cost of having T1. I’ve had to stay in jobs (and my husband is currently staying in a job) that are not what I went to school for due to needing some type of coverage, no matter how slim.
Being in the Jardiance donut hole means I gotta pay $800 to cover me from August to the end of the year, and that kicks my bank account pretty hard. Yay for Tier 3 drugs. But it really helps level things out for me so I don’t want to go off it.
Have said before I feel discriminated against by Medicare for choosing MDI over a pump. Have to pay monthly for two insulins, needles, InPen. The InPen lasts for a year and should be Part B as a pump is. May at some point have to go back to a pump for financial reasons
A few years ago when insulin prices first spiked, I was paying a co-pay for covered drugs. My box of pens for just one of my insulins was then listed as well over $1200 for 3 months. These expenses came out of the blue. I had to forgo retirements contributions and planning.
In the past with different insurance yes. Now with Medicare and Medicare advantage no. However I have heard insurance rates are going to increase quite a bit next year- ouch. That may make a difference in how I answer.
Just yesterday, my husband had retired, and my insurance was through his employer. When I called in my prescription for Novalog, I was told the cost was $317.00. My jaw dropped. I was paying $17 per bottle. My costs have increased, and it seems all of them have and it is not cool I am being punished for having diabetes. Thank you, insurance company.
I am self employed which means I pay through the nose for insurance premiums. Luckily, I can afford to pay for a good plan that covers most of my meds and supplies but I would certainly have a lower premium plan if I did not have T1D.
I’m single, working a true “lower-middle income” job meant cash consideration was always part of life. Along with plenty of overtime hours, I did yard work and other odd jobs for luxuries (to include the dogs I’ve rescued) like cable and yeah the insulin and other supplies. But my medical costs were always a consideration. Sacrifice? My vacations were to drive to visit family, in a vehicle I did all the maintenance. But my neighbors did similar to be sure their children had school items. Don’t know if my Saturday nights grilling hotdogs at a neighbor’s because steaks weren’t on sale is a sacrifice, but having diabetes for me is always a concern. I don’t know if I’d have a greater quality of life if not TYPE 1, more money.
(Admitted last week I really feel lucky because I feel better at 63 than many much younger, that stress towards health might have offered a huge benefits. Even with a sore back and knees I really feel lucky, financially? Unsure)
I answered yes; HOWEVER for many years it didn’t. Wasn’t until the drug companies, middle man, etc. wanted more money that it’s caused me to make sacrifices (food, electric, water, health and car insurance, rent, car payment) which one can I skip this month so I can pay for my Novolog since my Medicare Advantage plan STILL refuses to cover it even though I can’t use Humalog because I’m allergic to it. sigh
I used Novolin R for a while to compare lower cost insulins to Humalog and it worked very well for me. Of course an older insulin and not as fast acting but my TIR was the same – but did have a few more lows – but for $30 per vial at Walmart and no prescription needed it worked well.
@Philip Bunsick I use Novolin R when I had to take a heavy duty steroid; that way my pump setting doesn’t have to be increased so much I’m changing it out daily.
I have good corporate insurance, however I still reach my out of pocket around September or October each year. I’m approaching Medicare now, so that may make expenses better with the sensors and insulin covered.
@Pauline M Reynolds
I think their loop around is having me switch from one insulin to another and the one they have me switching to through another company is $35.00 per bottle. Still higher than $17.00 per bottle
I am used to dealing with insurance coverage as well as co-pays. It’s been a part of my life for 57 years. God has blessed, and helped me to afford what is needed.
I answered no but I currently have employer provided insurance. As I approach retirement I am very concerned about keeping the same level of care at a reasonable cost.
I’ve not been able to do many things I’d like to do: purchase 2 more clarinets (ranging from 3,000 to 5,000 USD), travel to learn more music, and both of those things prevent me from getting more performances and income. 🙁
no, In Belgium we have fortunately a great health insurance system! All employees pay tax for that and we are not even in the Soviet Union 🙂 All medical costs are partial or fully re-imbursed.
I answered yes which is incorrect. I thought I was answering a different question. Need to fix the percentages.
Since I have coverage as in Medical Insurance I no longer feel that way
All the money I spend could have been invested or saved for something that would bring a long term value to myself or my family. In over 25 years I have spent, including my cost of insurance over $195,000. That’s what I have paid to stay alive for another 24 hours since I was diagnosed in 1997. If I could have put that in a retirement account instead…. even with the current downturn I would be in a way better retirement position since I am 9 years away from retirement today.
I’m currently disabled so I get full coverage for the first time in my life. In my 20’s and 30’s blood glucometer strips were super expensive. I couldn’t afford both strips and insulin so I’d only purchase insulin.
Absolutely, yes.
I am so sad to see how many people answered yes. I’m grateful that my Medicare Advantage plan covers most of my expenses.
There are no financial costs associated with T1 Diabetes for myself as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where all of financial costs are covered by our NHS (National Health Service), which is financed via direct taxation of all working people.
That does NOT mean that we don’t have to make sacrifices in other areas of our lives. Having been retired on grounds of ill-health in 1990 and therefore requiring support from Government handouts, there are times when I’ve been admitted to hospital where it’s been found that I’ve been suffering with malnutrition. This is because we often have periods when we can’t even afford basic food necessities. (The only way that I’m able to use the internet is because one of our neighbours [neighbors] graciously allows me to ‘piggyback’ his internet connection.)
I can’t remember how long it’s been since we last went out for a meal; visit a pub; visit a museum or art gallery, etc. but it’s been well over 25 years now.
My insurance cover most of the costs, but the high cost of insurance premiums affect how I spend in other areas of my life.
I am blessed that my answer is no due to insurance and a good job before retirement that keep me comfortable financially.
I don’t see how anyone with T1 can seriously answer “No” to this. My perception is just having to take insulin routinely, having to deal with injections, CGMs, pumps, insulin, and appointments, and meds forces “sacrifices” of some sort. That said, it’s how T1s “deal” or “handle” those impacts thats of consequence.
The question is specifically about the financial sacrifices, not the emotional cost of having T1. I’ve had to stay in jobs (and my husband is currently staying in a job) that are not what I went to school for due to needing some type of coverage, no matter how slim.
Being in the Jardiance donut hole means I gotta pay $800 to cover me from August to the end of the year, and that kicks my bank account pretty hard. Yay for Tier 3 drugs. But it really helps level things out for me so I don’t want to go off it.
Have said before I feel discriminated against by Medicare for choosing MDI over a pump. Have to pay monthly for two insulins, needles, InPen. The InPen lasts for a year and should be Part B as a pump is. May at some point have to go back to a pump for financial reasons
I feel the same way.
A few years ago when insulin prices first spiked, I was paying a co-pay for covered drugs. My box of pens for just one of my insulins was then listed as well over $1200 for 3 months. These expenses came out of the blue. I had to forgo retirements contributions and planning.
In the past with different insurance yes. Now with Medicare and Medicare advantage no. However I have heard insurance rates are going to increase quite a bit next year- ouch. That may make a difference in how I answer.
Just yesterday, my husband had retired, and my insurance was through his employer. When I called in my prescription for Novalog, I was told the cost was $317.00. My jaw dropped. I was paying $17 per bottle. My costs have increased, and it seems all of them have and it is not cool I am being punished for having diabetes. Thank you, insurance company.
You should not pay more than $35 a month no matter what insurance you have. New law.
No….not because I don’t have lots of medical expenses, but because I life rent free.
*live
Inconvenient bladder products
I am self employed which means I pay through the nose for insurance premiums. Luckily, I can afford to pay for a good plan that covers most of my meds and supplies but I would certainly have a lower premium plan if I did not have T1D.
I’m single, working a true “lower-middle income” job meant cash consideration was always part of life. Along with plenty of overtime hours, I did yard work and other odd jobs for luxuries (to include the dogs I’ve rescued) like cable and yeah the insulin and other supplies. But my medical costs were always a consideration. Sacrifice? My vacations were to drive to visit family, in a vehicle I did all the maintenance. But my neighbors did similar to be sure their children had school items. Don’t know if my Saturday nights grilling hotdogs at a neighbor’s because steaks weren’t on sale is a sacrifice, but having diabetes for me is always a concern. I don’t know if I’d have a greater quality of life if not TYPE 1, more money.
(Admitted last week I really feel lucky because I feel better at 63 than many much younger, that stress towards health might have offered a huge benefits. Even with a sore back and knees I really feel lucky, financially? Unsure)
The cost of insulin and supplies is a major cost each month.
It used to be when I wasn’t employed. I’m now in a stable job and don’t worry about the costs so much.
I answered yes; HOWEVER for many years it didn’t. Wasn’t until the drug companies, middle man, etc. wanted more money that it’s caused me to make sacrifices (food, electric, water, health and car insurance, rent, car payment) which one can I skip this month so I can pay for my Novolog since my Medicare Advantage plan STILL refuses to cover it even though I can’t use Humalog because I’m allergic to it. sigh
I should also mention that my plan covers my pump & Dexcom supplies at 100%, thank goodness.
I used Novolin R for a while to compare lower cost insulins to Humalog and it worked very well for me. Of course an older insulin and not as fast acting but my TIR was the same – but did have a few more lows – but for $30 per vial at Walmart and no prescription needed it worked well.
@Philip Bunsick I use Novolin R when I had to take a heavy duty steroid; that way my pump setting doesn’t have to be increased so much I’m changing it out daily.
Of course, but I was adult and remember the before and after. So perspective.
I have good corporate insurance, however I still reach my out of pocket around September or October each year. I’m approaching Medicare now, so that may make expenses better with the sensors and insulin covered.
YES definitely! For the past 68+ years the financial burden of increasing medical expenses has been a determining factor.
My sacrifices are more like staying in a job because of health insurance than deciding to use different things due to cost.
@Pauline M Reynolds
I think their loop around is having me switch from one insulin to another and the one they have me switching to through another company is $35.00 per bottle. Still higher than $17.00 per bottle
Money forced to buy mandatory D supplies, medications cannot be used elsewhere. 1,000% absolutely the costs require obscene tragic sacrifices.
I am used to dealing with insurance coverage as well as co-pays. It’s been a part of my life for 57 years. God has blessed, and helped me to afford what is needed.
I answered no but I currently have employer provided insurance. As I approach retirement I am very concerned about keeping the same level of care at a reasonable cost.
I’ve not been able to do many things I’d like to do: purchase 2 more clarinets (ranging from 3,000 to 5,000 USD), travel to learn more music, and both of those things prevent me from getting more performances and income. 🙁
no, In Belgium we have fortunately a great health insurance system! All employees pay tax for that and we are not even in the Soviet Union 🙂 All medical costs are partial or fully re-imbursed.