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.
July 1 my insurance CIGNA changed the vendors for DME and raised prices. The vendors Express Scripts and Edgepark are incoherent, careless. I pay 19% of my net salary for employer provided health coverage. Switching the end of this year.
With traditional Medicare my pump and CGM supplies are covered as Part B Durable Medical Equipment with Medicare paying 80% and my CIGNA supplemental insurance paying the remaining 20%.
Since I have been on Medicare on May 1st it has been extremely stressful and financially challenging. The costs may force me to go back to multiple shots a day.
For the time being, I am getting the supplies I need that are covered by Medicare and my supplemental UHC insurance.
However, I’ve gone through two Dexcom receivers that stopped working. Medicare will not pay for another for 5 years. I bought a new telephone so I could use the Dexcom G6 app. The app kept losing the transmitter signal and didn’t work properly.
Otherwise, cost is not currently my major concern. My currently problems is getting my supplies (CGM) on time from Edgepark.
I answered “A little concerned”. Am on Medicare with a fairly decent Advantage plan, but am in the donut hole so things are bit more pricey. I wish they would just get rid of the donut hole nonsense and evenly distribute reasonable payments across the entire 12 month period so senior adults with T1D can plan and budget accordingly. Our spending needs don’t change when we reach the “donut hole”; in fact because T1D is an ongoing expensive health concern we often reach the donut hole by mid-year and then we are stuck with having to pay more for what we need to stay alive.
Negotiating the coordination of doctor’s office, insurance company, and third-party DME is stressful. Their stories don’t jive so I wonder who is lying or if anyone is telling the truth. Tuesday everything is fine; then Friday 4PM I am told my order cannot be shipped, and this pattern repeats week after week until just before I will no longer be able to use my CGM because my transmitter will expire or I won’t have sensors, and then they relent. I get my stuff, but the next time I need stuff, the cycle begins again.
Although we have reasonable retirement earnings, my copay for insulin despite Medicare and bridge insurance is over $700 every other month. I’ve stopped eating lunch, which eliminates a dose of novolog and lowers my Tresciba. I’ve lost 25 lbs over the years, lowered my A1C. If I get hungry, I have a non-carb snack such as nuts or coffee with a splash of milk.
There are other’s who do the same. I’m one of them.
If it weren’t for the cost of my Novolog, my Medicare Advantage plan would be awesome. They cover none of it though, because it’s not on their formulary & I am allergic to Humalog.
It costs me roughly $14 per day for supplies, mainly towards insurance that covers CGM, pump, and insulin needs. My prescription insurance has a $400 yearly deductible and my first vial eats up most of that, no help from medicare. After that the price drops to $25 per vial until the doughnut hole pushes it up to $100. Try to get samples from my Dr each visit. Having diabetes for over 50 years the total cost is enormous! PS had very poor service from Edgepark, US Medical so much more organized.
Right now I’m blessed with great insurance and a full time job. However in the past I have had to either go without, minimize the amount of supplies used, or even sell belingingdms in order to afford insulin, strips, etc.
Not at all concerned as I live in the United Kingdom of Great Britain and Northern Ireland so do not have to pay anything for my diabetes supplies. (They are paid for by our NHS (National Health Service), which is financed via direct taxation of all working people.
I am concerned because the supplies to maintain safe levels of blood glucose are expensive on a fixed income. Those of us that try to keep up with the technology have struggles.
The costs referenced by most here are the direct peel-off-the-dollar-bills to pay someone costs. However, as we’re learning about crypto currency, money in the digital age does not have to be foldable.
The cost that everyone hints at but never explicitly mentions is the “time costs” of the American medical system. The time spent waiting on the phone; the time spent talking to medicare; the time spent talking to secondary insurance; the time spent talking to MD’s; the time spent talking to CGM vendors; the time spent talking to pump vendors; the time spent talking to pharmaceutical companies; the spent talking to local drug stores.
Now multiply all those times together, since in each and every case someone is on the other end of the phone with you. They waste time calling each other trying to get “the other guy” to pay for something.
I do not know what your time nor mine is worth. But you could estimate the physician’s time, the insurance guy’s time, etc. etc. When all is said and done, it amounts to a time tax. It doesn’t appear to have a monetary value, but, boy, does it cost a lot. ¯\_( ͡❛ 益 ͡❛)_/¯
As others have stated above coverage of care and supplies is very dependent on the particular insurance plan people are on. Right now I am covered well, but through out my 25 years I have had many different company supplied insurance plans some of which were so expensive I was struggling to pay for MID.
while I’m not particularly concerned about affording it I will say that because of Medicare’s restrictions on ordering cgm supplies I’m concerned that I won’t receive them in time for my next extended time away from home. When traveling it’s especially hard to get that timing right. There should definitely be some provision for this
As the end of the Recovery Act comes closer I am very concerned. We have not been recalled to work yet, and finding new jobs at our ages is difficult. Not sure what we will do.
I more concerned FedEx is going to lose them again and give me the run around. The regional facility in my area is known for shipping packages by mistake across the country. There are multiple reviews stating it is the Bermuda Triangle of FedEx.
My supplies are affordable; I’m lucky to have great insurance. MY problem is receiving them safely & securely each time. Medtronic uses only UPS, and I learned yesterday drivers are not supposed to ring a doorbell when they leave a package UNLESS the shipper pays extra to require a signature. Now I know why they ignored the sign I’d taped on the door, asking them to ring before leaving.. I stay home when I know supplies are supposed to arrive, as we’ve had packages stolen before (including pump supplies) when we were home, despite signing up for UPS notifications. Thieves are fast here.. I think I’ve talked Medtronic into requiring a signature every time (without requiring a lengthy phone call every 3 months). We’ll see if it works. One would think getting a driver to ring a dang doorbell when they leave expensive medical supplies should be easy for the user to request, but it isn’t. If it happens again, I’ll switch to Tandem and Dexcom so most supplies will come from my pharmacy. Time for a new pump anyway…
I contribute to groups that are working to preserve and expand social security and Medicare for all. I hope at least future American generations will have single payer universal health care. There are other countries where private health insurance companies are required to be non-profit. Result? Better health care for more people at half the cost of US health care. It took organized political struggle to get social security and to finally get Medicare. Why stop now?
My Medicare plan is great. I am lucky. I did at one time in my career leave a job I loved at a non-profit and return to teaching in a public school for the health insurance though. At one time in my late 30’s I was on the “Colorado Health Insurance for the Uninsurable,” which cost as much just for me as the insurance we had for the 3 other members of our family.
Good Medicare Advantage plan insurance!
July 1 my insurance CIGNA changed the vendors for DME and raised prices. The vendors Express Scripts and Edgepark are incoherent, careless. I pay 19% of my net salary for employer provided health coverage. Switching the end of this year.
With traditional Medicare my pump and CGM supplies are covered as Part B Durable Medical Equipment with Medicare paying 80% and my CIGNA supplemental insurance paying the remaining 20%.
Just a little concerned with possible Medicare changes
Since I have been on Medicare on May 1st it has been extremely stressful and financially challenging. The costs may force me to go back to multiple shots a day.
For the time being, I am getting the supplies I need that are covered by Medicare and my supplemental UHC insurance.
However, I’ve gone through two Dexcom receivers that stopped working. Medicare will not pay for another for 5 years. I bought a new telephone so I could use the Dexcom G6 app. The app kept losing the transmitter signal and didn’t work properly.
Otherwise, cost is not currently my major concern. My currently problems is getting my supplies (CGM) on time from Edgepark.
Call, Dexcom, there is a simple setting on your phone that fixes the lost signal.
I answered “A little concerned”. Am on Medicare with a fairly decent Advantage plan, but am in the donut hole so things are bit more pricey. I wish they would just get rid of the donut hole nonsense and evenly distribute reasonable payments across the entire 12 month period so senior adults with T1D can plan and budget accordingly. Our spending needs don’t change when we reach the “donut hole”; in fact because T1D is an ongoing expensive health concern we often reach the donut hole by mid-year and then we are stuck with having to pay more for what we need to stay alive.
My greatest concern is receiving my supplies at the appropriate time.
Negotiating the coordination of doctor’s office, insurance company, and third-party DME is stressful. Their stories don’t jive so I wonder who is lying or if anyone is telling the truth. Tuesday everything is fine; then Friday 4PM I am told my order cannot be shipped, and this pattern repeats week after week until just before I will no longer be able to use my CGM because my transmitter will expire or I won’t have sensors, and then they relent. I get my stuff, but the next time I need stuff, the cycle begins again.
Although we have reasonable retirement earnings, my copay for insulin despite Medicare and bridge insurance is over $700 every other month. I’ve stopped eating lunch, which eliminates a dose of novolog and lowers my Tresciba. I’ve lost 25 lbs over the years, lowered my A1C. If I get hungry, I have a non-carb snack such as nuts or coffee with a splash of milk.
There are other’s who do the same. I’m one of them.
If it weren’t for the cost of my Novolog, my Medicare Advantage plan would be awesome. They cover none of it though, because it’s not on their formulary & I am allergic to Humalog.
Supplies have been part of or budget forever. That does not mean they are affordable. We give up other things.
It costs me roughly $14 per day for supplies, mainly towards insurance that covers CGM, pump, and insulin needs. My prescription insurance has a $400 yearly deductible and my first vial eats up most of that, no help from medicare. After that the price drops to $25 per vial until the doughnut hole pushes it up to $100. Try to get samples from my Dr each visit. Having diabetes for over 50 years the total cost is enormous! PS had very poor service from Edgepark, US Medical so much more organized.
Due to a “surgery” I had due to diabetic retinopathy my copay and out of pocket have all been met. So I am good at least til the end of the year.
.
Right now I’m blessed with great insurance and a full time job. However in the past I have had to either go without, minimize the amount of supplies used, or even sell belingingdms in order to afford insulin, strips, etc.
Not at all concerned as I live in the United Kingdom of Great Britain and Northern Ireland so do not have to pay anything for my diabetes supplies. (They are paid for by our NHS (National Health Service), which is financed via direct taxation of all working people.
I am concerned because the supplies to maintain safe levels of blood glucose are expensive on a fixed income. Those of us that try to keep up with the technology have struggles.
I’m in Medicare. If I had to pay for majority of supplies I’d have to go back to MDIs.
The costs referenced by most here are the direct peel-off-the-dollar-bills to pay someone costs. However, as we’re learning about crypto currency, money in the digital age does not have to be foldable.
The cost that everyone hints at but never explicitly mentions is the “time costs” of the American medical system. The time spent waiting on the phone; the time spent talking to medicare; the time spent talking to secondary insurance; the time spent talking to MD’s; the time spent talking to CGM vendors; the time spent talking to pump vendors; the time spent talking to pharmaceutical companies; the spent talking to local drug stores.
Now multiply all those times together, since in each and every case someone is on the other end of the phone with you. They waste time calling each other trying to get “the other guy” to pay for something.
I do not know what your time nor mine is worth. But you could estimate the physician’s time, the insurance guy’s time, etc. etc. When all is said and done, it amounts to a time tax. It doesn’t appear to have a monetary value, but, boy, does it cost a lot. ¯\_( ͡❛ 益 ͡❛)_/¯
As others have stated above coverage of care and supplies is very dependent on the particular insurance plan people are on. Right now I am covered well, but through out my 25 years I have had many different company supplied insurance plans some of which were so expensive I was struggling to pay for MID.
while I’m not particularly concerned about affording it I will say that because of Medicare’s restrictions on ordering cgm supplies I’m concerned that I won’t receive them in time for my next extended time away from home. When traveling it’s especially hard to get that timing right. There should definitely be some provision for this
As the end of the Recovery Act comes closer I am very concerned. We have not been recalled to work yet, and finding new jobs at our ages is difficult. Not sure what we will do.
Fortunately, I receive supplies and equipment via the VA. Hopefully, this doesn’t change!
I more concerned FedEx is going to lose them again and give me the run around. The regional facility in my area is known for shipping packages by mistake across the country. There are multiple reviews stating it is the Bermuda Triangle of FedEx.
My supplies are affordable; I’m lucky to have great insurance. MY problem is receiving them safely & securely each time. Medtronic uses only UPS, and I learned yesterday drivers are not supposed to ring a doorbell when they leave a package UNLESS the shipper pays extra to require a signature. Now I know why they ignored the sign I’d taped on the door, asking them to ring before leaving.. I stay home when I know supplies are supposed to arrive, as we’ve had packages stolen before (including pump supplies) when we were home, despite signing up for UPS notifications. Thieves are fast here.. I think I’ve talked Medtronic into requiring a signature every time (without requiring a lengthy phone call every 3 months). We’ll see if it works. One would think getting a driver to ring a dang doorbell when they leave expensive medical supplies should be easy for the user to request, but it isn’t. If it happens again, I’ll switch to Tandem and Dexcom so most supplies will come from my pharmacy. Time for a new pump anyway…
I contribute to groups that are working to preserve and expand social security and Medicare for all. I hope at least future American generations will have single payer universal health care. There are other countries where private health insurance companies are required to be non-profit. Result? Better health care for more people at half the cost of US health care. It took organized political struggle to get social security and to finally get Medicare. Why stop now?
My Medicare plan is great. I am lucky. I did at one time in my career leave a job I loved at a non-profit and return to teaching in a public school for the health insurance though. At one time in my late 30’s I was on the “Colorado Health Insurance for the Uninsurable,” which cost as much just for me as the insurance we had for the 3 other members of our family.