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.
Not Applicable as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where my diabetes supplies are paid for by our NHS (National Health Service), which is funded via direct taxation of all working people who earn more than a prescribed amount.
Having gone through a couple of different employers (through mergers) with different insurance carriers prior to my retirement, I was able to stockpile some supplies and insulin, which means I have a small rolling stock of extras.
Since I transitioned from Medical Insurance to Medicare, I have had multiple problems. Currently Solara Medical is my Medicare approved supplier of CGM’s and infusion sets. Solara frequently does not ship on time. For example, they shipped my Dexcom G-6 sensors two weeks after I requested them and eight days after when they should have and what they posted as the ship date. They refuse to ship the next batch until 90 days after their late ship date. I will run out of sensors, due to their late shipping. Solara claims that Medicare will not allow them to provide me with a CGM for every day of the year. If Solara screws up, they claim that Medicare will not allow them to send me enough sensors so that I have received one for each day. The new 90 day clock must re-start AFTER the late shipment due to Solara screw ups.
I’ve been denied a cgm since I refused a dexcom – even tho I’m type 1 – I prefer the old fashioned needles and vials – stockpiled some thank goodness- I don’t even have a endocrinologist – just see an internist- life, what can you do?
In the past, I’ve had problems with a pharmacist who refused to give me the right amount of test strips and lancets, saying I was testing too often. I threatened to have her arrested for impersonating a doctor and changing my prescription. She finally relented, but I changed pharmacies. Now, because I am on the inhalable Afrezza, I have to jump through hoops to get prior authorization each year. Fortunately, Mannkind helps with the process now and does most of the persuading.
Since moving to Medicare Part B I am not covered for test strips, even for that CGM gap when a new sensor is warming up or those rare times I want to check on the CGM readings I’m getting. Although I get all the sensors I need (I switched to a more reliable, customer oriented supplier) I have an issue that CGM sensors can only be shipped 1 month at a time, so timing is tight. And the box of G6 sensors is labeled with an ugly, bright orange “government funded supplies” or something like that!
The VA is my main supplier. I would say 90% of the time things go smoothly. Every now and then it all turns south! Infusion sets for my pump are the item with the least leeway in resupply. More than 2 problems in the resupply period and I have to use a few sets longer than I should. Dexcom Sensors are the other problem. If any go bad and Dexcom is not able to ship a replacement……. Especially a problem if it’s the last in the box and VA hasn’t shipped or there is a glitch in the “resupply chain”! Getting new transmitters is easy as long as I notify ahead that I need new ones. (Now they have switched to reordering like a prescription rather than ordering through prosthetics (?).)
Medicare needs to recognize and realize that those of us using a CGM still need to test blood sugars manually, especially during the CGM “warm up phase”, when CGM results are not agreeing with finger stick results, and during times of irritation and blood interference with CGMs. Also Medicare should allow coverage for blood glucose testing strips during times when T1Ds need to take a break from our CGMs.
1. My Tandem infusion set supposed,ier ships from Florida. They frequently mark my supplies as shipped when the package is processed and ready for pick-up. Frequently, the package sits not picked-u; overnight! Next, if it is picked-up on a Friday, it sits at the local UPS or Fedex distribution center over the weekend, and does not move to me until Monday (or Tuesday if there is a Monday holiday!). Meanwhile, the supplier (and they say Medicare) counts it as shipped, using the “ship date” to count my 90 days until the next shipment. My real ship date, due to the system they use, has moved 10 days oner the last year – with me having to make do with a shortage of supplies. The same goes for my CGM supplies. They all blame Medicare for this. 2. Magically, the suppliers and Medicare, come up with “reauthorization” requirements at the last minute. My endo has to jump through hoops to get it back to them, thus adding a delay. The supplier again uses the excuse “it’s Medicare!”. This again leads to the delay in receiving supplies and the burden to “bridge the gap” falls on me. Why Medicare can’t ask for reauthorization just on a normal basis and not at the last minute when a shipment is being processed is beyond me. 3. I have been a Type 1 for 53 years and on insulin for 49 years. Do they think think I am now able to stop insulin? WOW! I wish I could! Their bean counters somehow think they can catch me and thus save money? What a waste of time and stress on me. 4. When I retired, I thought I could do some traveling and enjoy the sunset of my years. Not so! Medicare micromanages my insulin and supplies on a strict 30-day basis, with no exceptions and no delivery outside of the US. I am now a prisoner of their system and have to manage my travel on their schedule, sometimes at additional cost and the unreliable delivery dates they force on me.
Yes, not only the amount but the correct supplies. The first suppler my Medicare Advantage plan had me use, repeatedly sent the incorrect pump sites, every single time saying what I used was no longer made by Tandem & this is what I HAD to use. The result, reuse of sites, to the point of infection, because of their refusal to send what my prescription said. It usually involved a phone call to Tandem to make sure they were still producing them, then a 3 way with me, Tandem & Byram to confirm with Byram, that indeed VeriSoft are still in production and to just please send the correct sites. They would then send the correct sites but fewer boxes because “I had used some of the other’s” no, I sent them all back to you. Learn how to count.
I said no, but I am not on Medicare. As a physician who specializes in T1D and has many T1D patients on Medicare, I see MAJOR delays- that puts people at risk for bad outcomes and greatly increases stress- and a huge administrative burden on suppliers, providers, and patients. Several years ago I authored a survey on MyGlu.org, the predecessor to this forum, to evaluate for how many people on Medicare and pumps (CSII) had problems with supply deliveries, and how they coped with it. The punchline- Of those starting CSII while on CMS, challenges included cost of supplies (29%) or the insulin pump (24%). The majority (57.5%) reported issues with obtaining supplies, the most common problems being delays in release of supplies (29%), difficulty getting paperwork completed (23.5%), and seeing a health care provider every 90 days (18%). Participants reported changing their CSII behaviors because of supply delays (39%) including leaving site in place >3 days (64%), and reusing pump supplies (34%). Consequently, participants reported adverse outcomes including more erratic (48%) or higher (42%) blood glucose and pain or irritation at sites (34%). We concluded that current CMS CSII policies promote adverse CSII behaviors and outcomes in type 1 diabetes and thus call for changes in the CMS CSII policies. —— The study can be reviewed for free here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196863/ ———————Medicare officials have refused to change the requirement for being seen every 90 days in order to receive supplies, regardless of need, despite the fact that there is no evidence to support the 90 day requirement, and the evidence that exists on the requirement (above as well as others) indicates it has adverse effects.
No. But over the years I and my medical team have learned more is better. My insulin is always written for more than I usually use per day because you just never know. What if I go on a carb festival? What if I mess up multiple infusion sites? What if I drop a bottle? What if I get ill and need more? Test strips, when I was using them, was the same always ask for a few more per day. Infusion sets can be written for changing every 2 days vs 3. Over time, you build up some overstock. I am fortunate that my private insurance doesn’t push back on the amount, just if I am trying to refill before I am allowed.
So I am two years away from Medicare and I am afraid reading all of these posts – that I can see anyway, which is only about 5. Someone had written Cigna RX had the best supplemental and I wrote that info down. I’ve only had issues one time when my doctor accidentally put down that I only tested 3 times per day when I test 6 (pump, no CGM. Luckily my pharmacist talked to the insurance company and seeing that for the last 5 years since I moved here, I’ve been getting a certain amount. That and my saying that I had stopped testing when I felt low because I was conserving strips not knowing if I would get my supply finally convinced them.
Yes. Unfortunately Medicare makes it almost impossible to have my cgm supplies delivered on time. Because they don’t allow shipment until 30 days after your last order I am almost always without a cgm sensor for a few days of the month. When your supplier takes an extra day or two to ship your order, which happens frequently, and it takes 2-5 days to actually be received after shipment, I have been without my cgm for a week.. I can’t think of any other medical prescription that you would be expected to be without a few days every month. Medicare should change this requirement
Yes. Like Ronald, I live with the 30 day deal with Medicare. I also had to get pre-approval to get each pump when needed. Now I’m dealing with my getting my supplies. Oh, well, such is life.
Since going on a Medicare Advantage plan with Byram as my supplier I have worked out a routine to re-order supplies exactly 12 to 10 days before the next shipment is due. They won’t let me re-order any sooner than that. I make the call to (or respond to the text message – TIME TO RE-ORDER YOUR SUPPLIES) to initiate the automatic re-oder process). My diabetes/endocrine care provider is top-notch and on top of making sure her end of the routine is up to date and on time. So far, so good with timely delivery of supplies. She also writes RX for extra insulin amount than I typically use q month for those atypical times when I need more. In order to play the CMS game, it is necessary to be clever and stay on top of what you need in order to outsmart the tired old system.
Everybody has issues with Medicare. Is anyone aware of an effective method of communicating with CMS or are we going to be stuck with their antiquated approach to technology forever?
I have had similar experiences to most everyone who has already posted. It is such a shame that we have to play a game with Medicare to make sure that we do not run out of supplies. As was mentioned by another person, travel to foreign countries is very difficult because of the timing of delivery of supplies. Shortly prior to one trip I was running low on everything including insulin,, Sensors, pump supplies and it was a real race requiring lots of assistance from my endocrinologist office to get all the paperwork taken care of and the supplies delivered before we left the country. Lots of unnecessary added stress. I had lots of trouble with Dexcom when I was having my supplies shipped directly from them as it was always two or three days beyond 90 days between each shipment. Eyes switched to United States Medical for my sensors and strips and they have been great at shipping on time and many times delivery is overnight. They also allow me to get strips for free under my Medicare part B even though I use a pump and CGM so I can do fingersticks when I feel it is necessary. I am able to get a 90 Day supply of everything. I can’t imagine the stress of only being able to get a 30 day supply as I would be frantic all the time. I too have built up a supply of everything. I get my pump supplies directly from Medtronic and it is very frustrating that I cannot re-order online and cannot re-order until I have only three infusion sets left. when my sister‘s husband died suddenly and we had to immediately get on a plane to go cross country to be with her I had the extra added stress of being on the phone with all of these companies trying to sort out my supply deliveries and making sure there would be someone available to sign for the deliveries. My insurance remind me constantly not to run out of my cholesterol lowering medication or acid reducing pills but is much more lax on life-saving diabetic supplies.
I said No because I do get all my supplies delivered timely, however, my insurance won’t pay for the novolog I have been on forever and switched me to humolog. I am not happy about that!! And then I have heard stories about people being on humolog being switched to novolog…. I just don’t get it.
Not Applicable as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where my diabetes supplies are paid for by our NHS (National Health Service), which is funded via direct taxation of all working people who earn more than a prescribed amount.
rare but i have to say yes,
Having gone through a couple of different employers (through mergers) with different insurance carriers prior to my retirement, I was able to stockpile some supplies and insulin, which means I have a small rolling stock of extras.
Since I transitioned from Medical Insurance to Medicare, I have had multiple problems. Currently Solara Medical is my Medicare approved supplier of CGM’s and infusion sets. Solara frequently does not ship on time. For example, they shipped my Dexcom G-6 sensors two weeks after I requested them and eight days after when they should have and what they posted as the ship date. They refuse to ship the next batch until 90 days after their late ship date. I will run out of sensors, due to their late shipping. Solara claims that Medicare will not allow them to provide me with a CGM for every day of the year. If Solara screws up, they claim that Medicare will not allow them to send me enough sensors so that I have received one for each day. The new 90 day clock must re-start AFTER the late shipment due to Solara screw ups.
Test strips have been the most challenging.
I’ve been denied a cgm since I refused a dexcom – even tho I’m type 1 – I prefer the old fashioned needles and vials – stockpiled some thank goodness- I don’t even have a endocrinologist – just see an internist- life, what can you do?
In the past, I’ve had problems with a pharmacist who refused to give me the right amount of test strips and lancets, saying I was testing too often. I threatened to have her arrested for impersonating a doctor and changing my prescription. She finally relented, but I changed pharmacies. Now, because I am on the inhalable Afrezza, I have to jump through hoops to get prior authorization each year. Fortunately, Mannkind helps with the process now and does most of the persuading.
Since moving to Medicare Part B I am not covered for test strips, even for that CGM gap when a new sensor is warming up or those rare times I want to check on the CGM readings I’m getting. Although I get all the sensors I need (I switched to a more reliable, customer oriented supplier) I have an issue that CGM sensors can only be shipped 1 month at a time, so timing is tight. And the box of G6 sensors is labeled with an ugly, bright orange “government funded supplies” or something like that!
The VA is my main supplier. I would say 90% of the time things go smoothly. Every now and then it all turns south! Infusion sets for my pump are the item with the least leeway in resupply. More than 2 problems in the resupply period and I have to use a few sets longer than I should. Dexcom Sensors are the other problem. If any go bad and Dexcom is not able to ship a replacement……. Especially a problem if it’s the last in the box and VA hasn’t shipped or there is a glitch in the “resupply chain”! Getting new transmitters is easy as long as I notify ahead that I need new ones. (Now they have switched to reordering like a prescription rather than ordering through prosthetics (?).)
On Medicare there are Timing issues with deliveries.
Medicare needs to recognize and realize that those of us using a CGM still need to test blood sugars manually, especially during the CGM “warm up phase”, when CGM results are not agreeing with finger stick results, and during times of irritation and blood interference with CGMs. Also Medicare should allow coverage for blood glucose testing strips during times when T1Ds need to take a break from our CGMs.
1. My Tandem infusion set supposed,ier ships from Florida. They frequently mark my supplies as shipped when the package is processed and ready for pick-up. Frequently, the package sits not picked-u; overnight! Next, if it is picked-up on a Friday, it sits at the local UPS or Fedex distribution center over the weekend, and does not move to me until Monday (or Tuesday if there is a Monday holiday!). Meanwhile, the supplier (and they say Medicare) counts it as shipped, using the “ship date” to count my 90 days until the next shipment. My real ship date, due to the system they use, has moved 10 days oner the last year – with me having to make do with a shortage of supplies. The same goes for my CGM supplies. They all blame Medicare for this. 2. Magically, the suppliers and Medicare, come up with “reauthorization” requirements at the last minute. My endo has to jump through hoops to get it back to them, thus adding a delay. The supplier again uses the excuse “it’s Medicare!”. This again leads to the delay in receiving supplies and the burden to “bridge the gap” falls on me. Why Medicare can’t ask for reauthorization just on a normal basis and not at the last minute when a shipment is being processed is beyond me. 3. I have been a Type 1 for 53 years and on insulin for 49 years. Do they think think I am now able to stop insulin? WOW! I wish I could! Their bean counters somehow think they can catch me and thus save money? What a waste of time and stress on me. 4. When I retired, I thought I could do some traveling and enjoy the sunset of my years. Not so! Medicare micromanages my insulin and supplies on a strict 30-day basis, with no exceptions and no delivery outside of the US. I am now a prisoner of their system and have to manage my travel on their schedule, sometimes at additional cost and the unreliable delivery dates they force on me.
Yes, not only the amount but the correct supplies. The first suppler my Medicare Advantage plan had me use, repeatedly sent the incorrect pump sites, every single time saying what I used was no longer made by Tandem & this is what I HAD to use. The result, reuse of sites, to the point of infection, because of their refusal to send what my prescription said. It usually involved a phone call to Tandem to make sure they were still producing them, then a 3 way with me, Tandem & Byram to confirm with Byram, that indeed VeriSoft are still in production and to just please send the correct sites. They would then send the correct sites but fewer boxes because “I had used some of the other’s” no, I sent them all back to you. Learn how to count.
I said no, but I am not on Medicare. As a physician who specializes in T1D and has many T1D patients on Medicare, I see MAJOR delays- that puts people at risk for bad outcomes and greatly increases stress- and a huge administrative burden on suppliers, providers, and patients. Several years ago I authored a survey on MyGlu.org, the predecessor to this forum, to evaluate for how many people on Medicare and pumps (CSII) had problems with supply deliveries, and how they coped with it. The punchline- Of those starting CSII while on CMS, challenges included cost of supplies (29%) or the insulin pump (24%). The majority (57.5%) reported issues with obtaining supplies, the most common problems being delays in release of supplies (29%), difficulty getting paperwork completed (23.5%), and seeing a health care provider every 90 days (18%). Participants reported changing their CSII behaviors because of supply delays (39%) including leaving site in place >3 days (64%), and reusing pump supplies (34%). Consequently, participants reported adverse outcomes including more erratic (48%) or higher (42%) blood glucose and pain or irritation at sites (34%). We concluded that current CMS CSII policies promote adverse CSII behaviors and outcomes in type 1 diabetes and thus call for changes in the CMS CSII policies. —— The study can be reviewed for free here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196863/ ———————Medicare officials have refused to change the requirement for being seen every 90 days in order to receive supplies, regardless of need, despite the fact that there is no evidence to support the 90 day requirement, and the evidence that exists on the requirement (above as well as others) indicates it has adverse effects.
No. But over the years I and my medical team have learned more is better. My insulin is always written for more than I usually use per day because you just never know. What if I go on a carb festival? What if I mess up multiple infusion sites? What if I drop a bottle? What if I get ill and need more? Test strips, when I was using them, was the same always ask for a few more per day. Infusion sets can be written for changing every 2 days vs 3. Over time, you build up some overstock. I am fortunate that my private insurance doesn’t push back on the amount, just if I am trying to refill before I am allowed.
So I am two years away from Medicare and I am afraid reading all of these posts – that I can see anyway, which is only about 5. Someone had written Cigna RX had the best supplemental and I wrote that info down. I’ve only had issues one time when my doctor accidentally put down that I only tested 3 times per day when I test 6 (pump, no CGM. Luckily my pharmacist talked to the insurance company and seeing that for the last 5 years since I moved here, I’ve been getting a certain amount. That and my saying that I had stopped testing when I felt low because I was conserving strips not knowing if I would get my supply finally convinced them.
Yes. Unfortunately Medicare makes it almost impossible to have my cgm supplies delivered on time. Because they don’t allow shipment until 30 days after your last order I am almost always without a cgm sensor for a few days of the month. When your supplier takes an extra day or two to ship your order, which happens frequently, and it takes 2-5 days to actually be received after shipment, I have been without my cgm for a week.. I can’t think of any other medical prescription that you would be expected to be without a few days every month. Medicare should change this requirement
Yes. Like Ronald, I live with the 30 day deal with Medicare. I also had to get pre-approval to get each pump when needed. Now I’m dealing with my getting my supplies. Oh, well, such is life.
Since going on a Medicare Advantage plan with Byram as my supplier I have worked out a routine to re-order supplies exactly 12 to 10 days before the next shipment is due. They won’t let me re-order any sooner than that. I make the call to (or respond to the text message – TIME TO RE-ORDER YOUR SUPPLIES) to initiate the automatic re-oder process). My diabetes/endocrine care provider is top-notch and on top of making sure her end of the routine is up to date and on time. So far, so good with timely delivery of supplies. She also writes RX for extra insulin amount than I typically use q month for those atypical times when I need more. In order to play the CMS game, it is necessary to be clever and stay on top of what you need in order to outsmart the tired old system.
Everybody has issues with Medicare. Is anyone aware of an effective method of communicating with CMS or are we going to be stuck with their antiquated approach to technology forever?
I have had similar experiences to most everyone who has already posted. It is such a shame that we have to play a game with Medicare to make sure that we do not run out of supplies. As was mentioned by another person, travel to foreign countries is very difficult because of the timing of delivery of supplies. Shortly prior to one trip I was running low on everything including insulin,, Sensors, pump supplies and it was a real race requiring lots of assistance from my endocrinologist office to get all the paperwork taken care of and the supplies delivered before we left the country. Lots of unnecessary added stress. I had lots of trouble with Dexcom when I was having my supplies shipped directly from them as it was always two or three days beyond 90 days between each shipment. Eyes switched to United States Medical for my sensors and strips and they have been great at shipping on time and many times delivery is overnight. They also allow me to get strips for free under my Medicare part B even though I use a pump and CGM so I can do fingersticks when I feel it is necessary. I am able to get a 90 Day supply of everything. I can’t imagine the stress of only being able to get a 30 day supply as I would be frantic all the time. I too have built up a supply of everything. I get my pump supplies directly from Medtronic and it is very frustrating that I cannot re-order online and cannot re-order until I have only three infusion sets left. when my sister‘s husband died suddenly and we had to immediately get on a plane to go cross country to be with her I had the extra added stress of being on the phone with all of these companies trying to sort out my supply deliveries and making sure there would be someone available to sign for the deliveries. My insurance remind me constantly not to run out of my cholesterol lowering medication or acid reducing pills but is much more lax on life-saving diabetic supplies.
I said No because I do get all my supplies delivered timely, however, my insurance won’t pay for the novolog I have been on forever and switched me to humolog. I am not happy about that!! And then I have heard stories about people being on humolog being switched to novolog…. I just don’t get it.