Countdown to Medicare with Type 1 Diabetes: 6 Months / The Journey

Laddie_Head SquareI occasionally have readers who contact me by email rather than leave comments on my blogposts. Kathy K from New York is one of those readers. She and I have an amazingly number of things in common. She was diagnosed with Type 1 diabetes in 1974 at age 23 after recently graduating from school and getting married. I was diagnosed in 1976 at age 24 after recently graduating from school and getting married. She has 2 children and 5 grandchildren. I have 2 children and 5 grandchildren. Do you see a pattern here?

Kathy is a few steps ahead of me in the Medicare process. Today she has written about some of her experiences as a newcomer to Medicare. There is no doubt that she knows “diabetes.” In addition to living with Type 1, she is a retired RN and BSN Certified Diabetes Educator.

Welcome, Kathy K from New York, and I hope that this is the first of many guest posts!

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The Journey that is Medicare

kathy-krieg-headshotThank goodness that I found Laddie. I was fuming with frustration trying to get my first prescriptions, pump supplies and strips through Medicare. Even though Laddie is not quite there yet, her blog regarding her journey toward Medicare eligibility sounded exactly like mine.

The  psychological profile of most persons with Type 1 diabetes who use an insulin pump probably include such traits as independence, controlling, problem solving and motivated. (well maybe that’s just me!) I have lived with Type 1 diabetes for 42 years and thankfully had excellent health insurance and a wonderful physician willing to let me “run the show”

What a shock to realize that Medicare regulations takes all that away. You all know how we make sure we have enough pump supplies on hand, strips to cover frequent testing and insulin. I am here to tell you to be sure to have enough on hand to withstand ins and outs of new insurance rules.

Some of the biggies are Medicare does not cover CGM. Only 100 test strips are allowed if you take insulin and calculating your individual costs for medications is an accounting nightmare! But wait, there’s more to share. Do not take any of those restrictions at face value. My motto “Never take NO for an answer.” As many people that you call looking for help, that’s as many different answers you can get for the very same question.

Here is what I found out along my journey.  I am now knee deep in the muddy waters of Medicare coverage. Medicare has been approving some CGMs. A very specific appeal process needs to be followed but even courts have directed Medicare to approve of these devices. With that said, contact your supplier for help. They will probably offer you a decreased price for persons who have to pay out of pocket. My experience with Medtroniccountdown-to-medicare-6-months is that before you order supplies, you have to sign a disclaimer that states:  1) bill Medicare the full price and you will proceed with the appeals process to get the bill for $473.00 for a box of 5 sensors. If the appeal fails, you are responsible for the entire amount. Or 2) I want the sensors but will pay a decreased price up front now and cannot then bill Medicare and go through the appeals process. This price is about 45% off or approximately $260.

Another fact to keep in mind for those on an insulin pump, the insulin used in the infusion device is covered under Part B of your Medicare health insurance. Do not back down on this one. Find a pharmacy that has experience billing this way and use them. For me that was Walgreens. My Walmart pharmacist looked at me like I had two heads when when I was trying to explain this. I have a Medicare supplement policy that picks up all costs that are not paid by Medicare. So my cost $0!! Yep, that’s right—$0 for my Humalog insulin. My infusion sets and reservoirs are also covered under this same policy. That is one of my biggest successes in this journey. A new order for pump supplies, for me reservoirs and infusion sets, cannot be started until you only have 5 sets left!!! or 81 days from the previous order.

Another change I encountered is that I can no longer get my test strips from the pump company. There is a bidding process for providers in some areas and whomever Medicare chooses as the winner of the bid is the type of strips and the place where you need get them. Additionally, you will only be allowed 100 strips per month. Not nearly enough for me and probably you too! Once again Medicare also known as CMS, has a process for appeal. You need to supply a log of your tests and a physician note documenting the need. I have yet to submit for strips. I am not due to reorder yet.

Lastly, at least for now, is drug coverage. This is the biggest stumbling block for me. I tried the mail order supplier the insurance company suggested. I am quite dissatisfied with this company and that is another long story. I am finding it difficult to follow how much each of my medications cost and how far down the line to the donut hole I am. Hopefully, that’s a learning curve I will master soon.

DISCLAIMER:  Please do your own research into your specific state and insurance companies regulations. This is just my experience in the journey that is Medicare.

ONE MORE THING:  I have an additional psychological trait. I am so stubborn with a 2 year-old’s “ME DO IT!” attitude. Hummmm… A 2 year-old battles Medicare! Stay tuned.

The Last D-Tech

Laddie_Head SquareThe last CGM.

The last pump.

The last D-tech before going on Medicare.

In early September I will purchase my last CGM system before going on Medicare in the spring. That will be followed by my final pump selection in early December. Rather than view these decisions with my usual excitement, I sit here with a stomachache of dread, frustration, and uncertainty. I tend to be naive and think that there is a “correct” decision when it comes to things like this, but there is enough going on in both the reimbursement and technology landscapes that I am faced with a lot of doubt.

First the CGM. It will be Dexcom for sure, but I am torn between staying with the G5 or going back to G4 platform. Although Dexcom is primarily marketing the G5, I use an Animas Vibe and have the option of staying with the G4 for the foreseeable future. (Please ignore the fact that I rarely use my pump as the CGM receiver. Click here for an explanation.) Currently Medicare does not cover continuous glucose monitoring for seniors with Type 1 diabetes. Many individuals and organizations are working hard for a policy change, but I am discouraged and convinced that I will have to self-fund my CGM starting at age 65.

Dexcom has made and continues to make decisions that make self-funding a CGM increasingly expensive. Looking at transmitters, G4 transmitters had a 6-month warranty but many of us experienced a much longer life than that. My most recent G4 transmitter lasted a year. G5 transmitters place a higher demand on batteries, but also have a software-mandated drop-dead date of about 100 days. Thus for someone who self-pays, transmitter costs have almost doubled from G4 to G5.

As yet no changes have been made that impact the cost of sensors. Unfortunately as reported at Diabetes Mine last week, the Dexcom CEO brought up the idea of Sensor Auto Shut-off during the latest quarterly earnings call. This was presented as a safety consideration and my initial snarky response was tweeted by Diabetes Hands Foundation: “So we can kill ourselves on Day 1 of a sensor when Dex is at its most inaccurate, but not on Day 11″ bit.ly/2b4fmjx @MNAZLaddie.” In Dexcom’s defense, no one can ignore the financial repercussions to Dexcom of customers using sensors for 2-3 times as long as warrantied.spiral with words_2016

I currently use most of my sensors for about 2-1/2 weeks. I have full insurance coverage for sensors, but experience better accuracy the second week than the first. I often finally change out a sensor for scheduling reasons or because it falls off despite SkinTac and additional tape. Very rarely is it because of performance problems. I doubt that there will be sensor auto shut-off until the G6, but it is another change that will greatly impact those who self-pay.

I think it makes sense for me to return to G4 for now, especially since I can use the Share feature to see data on my phone. Going back to carrying a receiver won’t bother me much, especially because I like the alarm profiles of the receiver much better than my phone. I am also tired of keeping my phone with me all of the time.

The CGM decision is tangled in my thoughts about a new pump. I am not in love with the Vibe and it doesn’t make sense to buy another one. Tandem is close to retiring the t:slim G4 and I know that if I go with Tandem, I would prefer to buy the t:slim X2 to be released in the fall. The last time I selected a pump for CGM reasons was the Ping in 2012 and it wasn’t a good choice for me. I’ll be writing more about pump musings in the fall, but as with previous pump decisions, it will be complicated by insurance considerations and the uncertain release date of new technology. Medicare rules will also come into play.

One undiscussed topic in today’s post is: If the cost of using a Dexcom continues to spiral upwards and there is no Medicare coverage, at what point will I choose to live without a CGM? Going back to the second paragraph of this blogpost, that is the sort of decision that fills me with “dread, frustration, and uncertainty.”

And fear.

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I sometimes conclude technology posts with the admission that my concerns are a #firstworldproblem. I am a privileged patient when it comes to diabetes and I am grateful.

Countdown to Medicare with Type 1 Diabetes: 12 Months

Laddie_Head SquareA year from today I will be on Medicare.

I have been one of the privileged. I have always had good health insurance and have never had to worry about running out of insulin or test strips. I have never had to choose between buying groceries and filling my prescriptions. I have had access to insulin pumps and full insurance coverage for a continuous glucose monitor.

I don’t exactly know what to expect with Medicare. Over time I suspect that I will figure out most of what I need to know. Right now I feel as though I am looking into the dark abyss of the unknown.

I know that there will be a lot of hoops to jump through to obtain a sufficient number of test strips and supplies for my insulin pump. I know that due to Medicare law I will no longer be eligible for medical device upgrade programs. I know that CGM’s are not covered by traditional Medicare and I will continue to advocate to have that changed. I know that a handful of Medicare Advantage plans cover CGM’s and I will have to do my homework to choose the best option for me. Because I use an insulin pump, I will purchase my insulin under Part B and I have heard nightmares about finding suppliers. The newly-instituted competitive bidding program for diabetes supplies worries me.

I currently pay a huge monthly amount for health insurance. It is possible that even if I must self-fund a CGM, Medicare will be a better financial deal than my current situation. I know that I will have a lot of decisions to make as I select my Medicare coverage and I suspect it will take many hours to figure out how things work. I know some people who have cruised into Medicare with few problems. I know others who have struggled to get test strips, pump supplies, and insulin.

There is a sadness in realizing that I will probably not get access to any or all of the new technologies and medications coming to market in future years. Things like the artificial pancreas, encapsulated insulin-producing cells, and smart insulin will likely not receive Medicare coverage for many years, if ever. At the same time I have to remember that I was diagnosed with diabetes in the days of one daily injection of a pork- or beef-based insulin. There was no home blood glucose testing and I peed on Diastix strips to get an approximation of what my blood sugar was several hours earlier.

The likelihood that I won’t always have the newest and greatest doesn’t mean that I won’t thrive under Medicare. Medicare is not something that I have a choice about and therefore I will make it work. I am expecting roadblocks and hassles in getting the medical supplies and medications that have always been easily purchased. I’ll probably scream as I navigate automated menu systems on my phone. I’ll probably rant and rave when things don’t go the way that I expect. But I will learn and I will be fine.

Many years ago very few people with Type 1 diabetes lived long enough to make it to Medicare in relatively good health. People like Richard Vaughn and Tom Beatson were a rarity. In coming years more and more of us with Type 1 will be reaching Medicare age. We have a lot of learn about Medicare and Medicare has a lot to learn about our needs.

My aim is to chronicle my journey as I countdown to Medicare. Over the last year I have occasionally grown tired of blogging. However, I have never doubted that I want to keep Test Guess and Go going as a storybook about Medicare with Type 1 diabetes. Right now I have no great words of wisdom to share. For better or worse I am on a one-way road to growing older with Type 1 diabetes and I don’t don’t plan to spend my senior years complaining or in poor health. So let’s get going….

 

Making Memories

Sue B_Head SquareMy husband Marc is a Type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Before going on Medicare in June of 2012, he had been using a Continuous Glucose Monitor (CGM) with full coverage by private insurance. As most of you know, Medicare does not cover the CGM. We spent almost two years going through the Medicare Appeals process and lost at every level. As we were deciding whether or not to go further (Federal Court), a night in shining amour came through for Marc in the form of the Veterans Administration. He had applied for VA benefits two years ago and that’s how long it took to get his application processed. Once it was processed, things moved quickly and in less then a month after his initial meeting with an endocrinologist, Marc was notified that a CGM and sensors were on their way. Since that day, the VA has sent all the supplies free of charge and for that we are very grateful. I use the word “we” throughout the blogs that I’ve done on our two year journey to get the CGM because I became Marc’s advocate and did all the blogging, letters to everyone I thought could help us, and made many connections with other people with diabetes. Although I do not have diabetes, I immersed myself into the cause to get Medicare to change their guideline for the CGM and will continue to do so.

The intention of this blog is not to be about diabetes. It’s about making memories. On Friday, December 19, Marc and I will leave for Florida. On Saturday, the 20th, our children and grandchild will meet us in Florida and on the 21st, we are going to board the Carnival Conquest for a 7-day cruise. This is in celebration of Marc’s and my Making Memories45th wedding anniversary. Marc and I did the same thing for our 40th anniversary and the memories we made during that cruise were invaluable. My daughter Robin, her husband Greg and our granddaughter Bailey live in Atlanta, as does our son Jason.  Marc and I live in Pennsylvania. There are over 800 miles between us and we don’t get to see our Atlanta family as often as we would like. When we did our 40th anniversary cruise, Bailey was only 5 and it was priceless seeing her delight during the entire cruise. She, as well as all of us except Greg, did a zip line. Together with her parents she went on a riverboat ride, and we all enjoyed the beaches in all the ports we went to and life aboard the ship. Bailey had ice cream for breakfast, lunch and dinner which is something that would never be allowed at home. Marc and Jason snorkeled and Jason jet skied. We all had new and adventurous experiences and had a great time being together. Now that Bailey is 10 and we are so looking forward to her new experiences and ours as well.

In the past few years, we have lost many friends to various diseases. One passed away from ALS and another died after a major heart attack. A few friends died from various types of cancer or have cancer presently and are going through treatment. My brother has had health issues and recently had two surgeries. And of course, for us, living with diabetes is always a presence in our lives. It’s a blessing when we have the opportunity to do things with our family and create memories that we can always pull out when times get rough.

At the age that Marc and I are at now, we want to make memories with our children and granddaughter that we can all cherish for many years to come. We know they also feel the same way. This is what is really important in life. The love you have for your family. The love they feel for you and all the happy moments that can be captured. It’s what makes life worth living.

Eight Days of Hanukkah

Sue B_Head SquareSince I celebrate Hanukkah, I decided to take each day of our eight day celebration and write what I am most grateful for.

On the 1st day of Hanukkah, I am very, very grateful for my husband Marc.  He is my rock and has been for over 45 years.

On the 2nd day of Hanukkah, I am grateful for my children: my son Jason, my daughter Robin and her husband Greg and my granddaughter Bailey.  They are the loves of my life.

On the 3rd day of Hanukkah, I am grateful for my friends.  Most of them have been in my life for over 35 years and since most of us live away from our immediate families, we have become family to each other.

On the 4th day of Hanukkah, I am grateful for my love of doing things with my hands.  I Menorah2014love crafting especially knitting and beadwork.  I especially love knitting afghans for our friends’ children who are getting married and for the babies when they come.

On the 5th day of Hanukkah, I am grateful for my love of reading.  I have traveled to different places and learned so much because I love to read everything and anything and have always, since early childhood loved the written word.

On the 6th day of Hanukkah, I am very grateful that we have a wonderful Hanukkah gift of a cruise for our entire family.  Since we haven’t seen sun here for the past five days (Harrisburg, PA), it will be wonderful to be in the sunshine and warmth of the Caribbean.

On the 7th day of Hanukkah, I am extremely grateful to the Veterans Administration for supplying a Continuous Glucose Monitor  (CGM) to my Type 1 diabetic husband Marc.  After a 2 year fight with Medicare that was frustrating and going nowhere, the VA is supplying the monitor and sensors free of charge.

On the 8th day of Hanukkah, I am very grateful to myself for having the tenacity to decide to fight for the CGM.  I learned so much about myself during this journey.  I never knew I had it in me to blog, to do a Podcast, to speak to so many people across the United States who were in the same predicament as Marc and make so many new friends.

So to everyone who reads my blogs, I wish you all a Merry Christmas (or Hanukkah) and a very Happy and Healthy New Year.

The Crusade Continues

Sue B_Head Square

As 2013 comes to a close, I can’t help but think about all the ways that I’ve grown this year.

At the start of  the year, I was waiting to hear from the Administrative Law Judge’s office to find out when my husband was going to get a date for his Medicare appeal for his CGMS. Before we actually got the date, I saw a Letter to the Editor in Diabetes Forecast Magazine from Janice Allen in Foresthill, California asking why Medicare would not cover her CGMS. That prompted me to Google her name and attempt to find her address. Fortunately Google is an amazing tool and there is almost nothing that you can’t find on it. I wrote Janice a letter and was pleasantly shocked when she called me within a few days of mailing it. That was the start of my advocacy. After I spoke to her, I decided that something needed to be done to change the Medicare CGM guidelines and if not me, who else? I was really tired of sitting on my hands and taking chances day-by-day with my husband’s life because he didn’t have a working CGMS.

I started surfing around the internet and came upon the American Diabetes Association Forums.  I found a post there from a woman in New York with a reference to CGMS. So I put a comment on the post and that started a wonderful friendship with Sue from New York. We quickly became fast e-mail friends and that translated a short time later into phone friends. Through her, I met Laddie who graciously offered me the opportunity to guest blog on her site. Laddie is one terrific person. Aside from the fact that she’s a gifted writer, she’s a good friend as well. She’s my go-to person for education about diabetes since I am not a diabetic and there is so much that I don’t know about it. She has also helped me tremendously as I navigate the blog world as a regular contributor to Test Guess and Go.

After my first blogpost I started hearing from others who were experiencing the same problem as my husband. They also were denied coverage of the CGMS. All are on Medicare; some are paying for their CGMS out of pocket and others, like my husband are going without. All are suffering in some shape and form because of Medicare’s decision not to pay for the CGMS.

Recently I was fortunate to connect with a Massachusetts woman, Carol Lewis, who shared the information that on December 11, 2013, Congresswoman Carol Shea-Porter of New Hampshire introduced a bill into Congress addressing the problem of CGM coverage by Medicare:   H.R. 3710: Medicare CGM Coverage Act – to amend title XVIII of the Social Security Act to provide for coverage of continuous glucose monitoring systems (CGMS) as durable medical equipment under Medicare, and for other purposes.  In this bill, CGMS coverage will include a transmitter, receiver, sensors, and test strips required for use. This is the first time, to my knowledge, that anyone in either Congress or the Senate has attempted to do anything about CGMS coverage. In early 2014 I will be posting more information about this bill and asking everyone to contact their Congressperson to request that they support this bill.

I have always shied away from calling attention to myself, but over the past year I have found that this is no longer possible. I have a husband who has a specific need and that need is a CGMS which for him is lifesaving. I can’t sit around and watch while he goes day in and day out without one. I also can’t sit around and watch anyone in the future who might need a CGMS go through the same process that we have been going through. It’s long and arduous and there have been many times when I’ve felt like throwing up my hands and packing it in. But each time I’ve felt this way, someone has been there to encourage me to continue.

New Year Crusade

I say that it’s my year of growth simply because along the way, I have learned so much about diabetes. I know that I have much more to learn. Along the way, I have met many people who have now become a part of my life. I have blogged. I have developed a relationship with Jim Bock of Diabetes Forecast. He has been a great source of help in having our story told in the magazine in the December 2013 issue. And recently I have developed a relationship with Congresswoman Shea-Porter’s legal assistant as well as Amy Wotring of the American Diabetes Association.

I thank each and everyone who has read my blogs and responded with a comment. I thank Sue and Laddie who have been an integral part of my journey. Most of all I thank my husband Marc who has been my life partner for the past 44 years and who is the reason why this is so important to me. I hope someday in the near future that Marc will open our front door to find a box containing a brand new CGMS that has been paid for by Medicare.

To everyone, I wish you a Happy and Healthy New Year.  You will be hearing more from me in 2014.

THIS POST IS MY DECEMBER ENTRY IN THE DSMA BLOG CARNIVAL.  IF YOU’D LIKE TO PARTICIPATE TOO, YOU CAN GET ALL OF THE INFORMATION AT HTTP://DIABETESCAF.ORG/2013/12/DECEMBER-DSMA-BLOG-CARNIVAL-3/‎

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My Insurance Appeal for Dexcom Coverage

Sue May 2013_Head SquareIn January 2010 I started using the Dexcom Seven Plus Continuous Glucose Monitor (CGM).  I had wanted to go on the FreeStyle Navigator CGM System because of its reputation for accuracy, but I went to the Syracuse Joslin Center to meet with the certified diabetes educator, she advised me to go on the Dexcom Seven Plus instead.  I reluctantly agreed.  Of course it turned out to be the right decision because not long after that Abbott stopped selling the Navigator in the U.S.

Anyone who uses the Dexcom knows what a life changer it is with controlling blood sugars.  I used to have at least two severe overnight hypoglycemic episodes every month.  I’ve only had one since going on the Dexcom.  Yes, there are nights when my husband and I are woken repeatedly by Dexcom alerts for high or low blood sugar. However, that is a small price to pay to avoid waking up wet with sweat and seeing my husband sitting next to me with a concerned look on his face.  What he went through to bring me to back to consciousness was much worse.  I know that experience because our son also has Type 1 diabetes and I have been on the caregiver side of severe hypoglycemia.

A year after going on the Seven Plus, my personal diabetes manager (PDM) that controls the sensor went out of warranty.  In February 2011 Dexcom sent me a new one.  I had changed from one Blue Cross insurance plan to another during the year, and although my new company had been paying for the sensors, they sent me a letter of denial stating the following:

“According to Corporate Medical Policy and peer-reviewed literature, continuous glucose monitoring systems are medically appropriate for patients who are currently using an external insulin pump and, for patients over 18 years of age, diabetes is poorly controlled as evidenced by unexplained severe hypoglycemic episodes defined as an episode of low blood sugar resulting in a profound degree of cognitive dysfunction (e.g., stupor, seizure or unconsciousness) which requires external assistance for recovery.  The medical records submitted by Dexcom do not indicate any of the above conditions.  Therefore, these services are not medically necessary and are ineligible for coverage for DOS 2/15/11.”

I immediately called the insurance company and was told that I could appeal the decision.  I composed a letter of appeal stating that both Dexcom and I had called to get authorization before the replacement PDM was shipped.  Dexcom had sent them records of my blood sugars and my endocrinologist’s letter of medical necessity.  When I had called, I was told that no pre-authorization was needed, just the letter of medical necessity.  So we both thought we were good to go. In the letter, I detailed numerous episodes of severe hypoglycemia, one resulting in cuts after falling into a glass table (luckily it was safety glass), and sometimes needing assistance from medics or transport to the emergency room.  I provided them with a copy of the bill from the hospital, as well as printed reports showing numerous blood sugar readings below 50 from my Dexcom and OmniPod pump.  In my final paragraph, I stated:

“In consideration of the fact that I am using an external insulin pump, over 18 years of age, and I have poorly controlled diabetes as evidenced by unexplained severe hypoglycemic episodes resulting in a profound degree of cognitive dysfunction, I believe that the CGM provided by Dexcom is in fact medically necessary for the effective management of my blood sugars.  In the event that I were to discontinue use of the Dexcom, I believe that I would resume having severe hypoglycemia episodes that would require outside assistance, i.e. a 911 call for assistance and/or emergency room hospitalization, and have higher A1C’s and increased variability in my blood sugar ranges.”

In June they reversed their decision and paid Dexcom.

Dex Insurance Appeal

I have since transitioned to the Dexcom G4 Platinum CGM and now enjoy increased accuracy and ease of use.

In two years I will be of Medicare age and I know that all the rules regarding continuous glucose monitors will be different.  I am thankful for people like Sue from  Pennsylvania who is assisting her Type 1 husband in appealing Medicare’s denial of payment with an administrative law judge.  I pray that they and others will pave the way for Medicare to change their policy of nonpayment for CGM systems so that Type 1’s can continue to stay safe in their retirement years.