Yesterday a couple of diabetes friends on Medicare got in touch with me to see how things were going with the reorder of my pump and CGM supplies.
One friend emailed: “Just checking in to see how your Dexcom reorder went. Did it ship? My bundle arrived yesterday (Tuesday).”
I replied: “My Dexcom reorder has not yet shipped…. It is being processed today so I expect it early next week.”
She also mentioned: “I am interested to hear how it goes when you order your pump supplies for 2 day changes.”
I replied: “I think that I will be getting 4 boxes of everything which is less than the 45 sets I would like but more than the 3 boxes the previous lady said….”
A second friend checked in through Messenger giving me an update of his D-life and indicating that everything was going smoothly with his Dexcom orders and his life in general.
I mentioned: “I haven’t written anything on my blog in a while because I don’t have much to say these days. That’s actually a good thing.”
A few hours later things fell apart and my smiles turned into grimaces of frustration. And here I am writing a blogpost.
Let me say that my supply orders are not completely straightforward. I am lucky to escape the cold and snow of Minnesota in the winter and spend several months in Arizona. I am paranoid about medical supplies ending up frozen on my front porch in Minnesota and always double-check with suppliers that they are using the Arizona address. Secondly I am at a stage in life that I need to change my infusion sets every 2 days. My skin and tissue have gotten less durable as I’ve aged and 3-day sites leave me with inflammation at the insertion site, itching and rashes, occasional bleeding, and poor absorption. Fortunately I had been warned in December that in 2018 Medicare was only covered 30 infusion sets every 90 days and I needed physician clinical notes to override that restriction. At my December endocrinologist appointment, I discussed this with my doctor and ensured that she included this in the visit notes.
Before I describe my supply woes, I should say that it is not all Medicare related. Unfortunately lots of people with diabetes struggle with insurance and suppliers to get their supplies. I have been uniquely lucky that I never had problems before getting to Medicare. I am someone who had fabulous service from the universally-hated Edgepark and never had my insurance question anything. My orders reliably arrived 3-4 days after ordering. I am new to waking up in the middle of the night and worrying about getting the correct supplies (and enough supplies!) at the correct location when I need them.
You don’t need all of the details, but both Dexcom and CCS Medical have emailed and called several times in the last 10 days, each time with a different rep and no realization that the order has been already been discussed and finalized. A Dexcom rep called me yesterday afternoon to see if I was ready to confirm my supplies for this month. I said it had already been done but went through everything with him and confirmed that the order would be shipped to Arizona. An hour later I received an order confirmation shipping to……Minnesota. I called Dexcom and spoke with another rep who had to once again confirm the supplies I needed. She placed a new order and canceled the order going to Minnesota. I think everything is OK and it only took 4 phone calls and 3 emails. And in 3-1/2 weeks I get to do it again!
CCS Medical has been equally attentive as I have received multiple emails and spoken with three different reps about my order. The first rep took my information, changed the shipping address, and indicated that I would only get 3 boxes of infusion sets. She told me that once my doctor’s clinical notes were received, I would be shipped the additional supplies required. A few days later a young man from CCS called and asked if I was ready to order. I said that I had already ordered but we went through it again. He confirmed that I would get 4 boxes of infusion sets so I assumed that they had received my doctor’s notes. After the Dexcom mess yesterday, I went online and checked my CCS order and saw that 3 boxes of infusion sets and cartridges were being shipped. But at least they were going to Arizona!. I called CCS. This rep confirmed the 3 boxes and said that there was no record of the young man’s call on Monday. She said that he didn’t work for CCS?!? She also said that my endo had not submitted clinical notes.
My endo’s office historically gets an A+ in promptly submitting required medical orders and clinical notes for my diabetes tech and supplies. But I called and faxed the office this morning and asked that the needed info to be sent to CCS again. I will keep following up with CCS because I absolutely require more than 30 infusion sets for the next 90 days.
My Thoughts: Medicare has not been horrible in providing what I need to stay healthy with Type 1 diabetes. Compared to many people with diabetes around the world, I am still a privileged patient. The issue has been that it takes a lot more work to ensure that I get what I need and what I am owed. Diabetes is always in the forefront because I have to keep checking that things are being handled correctly. It is like my life resets every 90 days and I have to start from scratch again. I have to see my endocrinologist every 3 months instead of my normal every 6 months. Now with Dexcom it’s a 30-day cycle due to Medicare rules. My blood glucose numbers are similar to my pre-Medicare numbers. But diabetes is in my face all of the time. It is a bigger burden and I worry more.
But tomorrow I am going on a 9-mile hike. I have what I need today and tomorrow.
So FU Diabetes and Medicare and Dexcom and CCS.
I’ll deal with you next week.
Test Guess and Go 
Oh, I am Glad things are on track, I am hoping it improves when you return home.
Thanks, Rick. I suppose when you get to Medicare you’re going to have the double fight to get your diabetes supplies along with your arthritis meds. In general most of Medicare has been fine for me but it takes a lot more work and attention.
Laddie – What a twist that can happen in a heartbeat! It just always takes “attention” and more of it these days.
On the other hand … dang glad you have beautiful country in AZ to be enjoying and hiking in. Take care.
Cheers – Nolan K.
Thanks, Nolan. I did have a great hike today, but there was still a knot in my stomach. I work so hard at this diabetes stuff and I don’t deal with frustration very well. But I’ll persevere and fortunately I have an endo who will fight with me.
Hi Laddie,
I hope you are doing well. You look great and happy too.
I find the best way to deal with CCS or Medicare, etc., is to get a copy of your doctor’s notes yourself and then forward those notes. Then they have no excuse, i.e. we need more paperwork. Let’s just move forward and get the job done.
Put that in your pipe and smoke it!
Much love, Evie
On Thu, Jan 25, 2018 at 6:32 PM, Test Guess and Go wrote:
> Laddie posted: “Yesterday a couple of diabetes friends on Medicare got in > touch with me to see how things were going with the reorder of my pump and > CGM supplies. One friend emailed: “Just checking in to see how your Dexcom > reorder went. Did it ship? My bundle arrive” >
Thanks for the suggestion, Evie. If CCS doesn’t fix the problem soon since my endo has submitted the forms twice, I’ll have the doc get me a copy of the notes so I can fax them every day!
Hi Laddie
Evie sent me the link to your blog. Looking forward to catching up and learning.
Glad to have you as a reader, Laurie. Evie is a wonderful friend and a diabetes heroine!
Oh wow Laddie, I don’t know how you do it without screaming! And I’ll have to do it in less than 10 years. Here’s hoping you have a fabulous hike, and that everything is smoothed over by the time you get back.
Thanks, Stephen. Start hoarding now! Fortunately I hiked today in a location with cell phone coverage and my endo’s nurse called me to assure me that she sent in the forms again yesterday. It is bad enough when an insurance company tries to practice medicine, but it’s really bad when a supply company starts rationing care.
Laddie,
Just remember that you have to tell your supplier that you have no supplies before they allow you to order. That leaves us with an interesting choice, lie or die.
Yes, I know that and am very adept at doing the math to see how many sets I am allowed to have left when ordering. For sure you know that those making the regulations have not lived with Type 1 diabetes…. At the same time I understand the desire to preventing hoarding, waste, and re-selling although I think that is more of a problem with test strips.
Hi Laddie,
After self funding my Dexcom for the first 5 years that I have been on Medicare, I received my first Medicare paid shipment from them in October. I was on vacation in California over Thanksgiving and Dexcom shipped my November sensors to where I was staying. In my January shipment, I received a new transmitter. Dexcom has been sending me supplies on the 22nd of every month after I go online and fill out the forms. They are really trying.
CCS Medical, from whom I get my pump supplies has been an a disaster. First off, they send you supplies for 90 days, but at times, won’t let you reorder for 94 days (when the 92nd day falls out on a Saturday). In October they failed to ship me my order of Animus cartridges because they ran out of them. It took them 10 days to finally get them back in stock. I called them every day and they always responded that they would get the cartridges tomorrow. I ended up using long expired cartridges which were given to me by the wife of a deceased friend. My reorder date was also pushed back 10 days.
This month, CCS decided to only ship me 30 insets & cartridges (I had been getting 45 ever since I have been on a pump) despite the fact that my doctor’s clinical notes called for 45 due to to occlusions and bleeding at the inset site. The clinical notes were faxed to them twice, but the CSR won’t let me talk to the people who read the notes and determine how often I should change sites. I’m currently trying to keep the inset in place for three days and hope that I can get them to send me the extra supplies.
Dave-Your comment depresses me and makes me sad. I am going to optimistic that I’ll get it worked out but my stomach is still is knots.
My pump warranty runs out in 4 wks. Been thinking about Tandem. Concerned about qty of supplies Medicare allows. Now with Animas, I get 45 cartridges and 30 infusion sets. Ok with me.
With larger capacity cartridges, from what you write, is it only 30 ? I deal with Edwards Medical Supplies. Pleased. I use approx 100 units insulin per day. ( 24 hr )
Paul, I’ve been on Medicare since April and had no problems with my 2017 orders getting 4 boxes of sets and cartridges. I don’t know whether this is a new 2018 Medicare policy or whether CCS is being a PITA. The Tandem X2 holds 300u of insulin but I think by the time you prime your tubing and then some insulin just “disappears,” it is less. The Tandem t:flex holds 480u of insulin which would be great for your insulin use. However it does not have the Dexcom integration and the ability for software updates.