Tag Archives: Medicare

Countdown to Medicare with Type 1 Diabetes: 11 Months / Options for Testing Supplies

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Laddie_Head Square11 months from now I will be on Medicare. April 2017. My aim is to write a monthly blogpost about what I am learning as I get closer to that date. Last month I wrote a general overview of my Medicare thoughts. This month I want to talk about testing supplies and Medicare’s national mail-order program for diabetes testing supplies.

Background:  In July 2013 Medicare instituted a national mail-order program for diabetes testing supplies that requires all beneficiaries to use a Medicare-contracted supplier for home-delivery of testing supplies. (Note: this applies to original Medicare only and not to Advantage plans. Also note that it is possible to buy testing supplies locally instead of through the mail-order program.) Part of the Competitive Bidding Program (CBP), this program was launched in nine test markets in 2011. According to a 2012 Centers for Medicare & Medicaid Services (CMS) update report:

 “CMS real-time claims monitoring has found no disruption in access to needed supplies for Medicare beneficiaries. Moreover, there have been no negative health care consequences to beneficiaries as a result of competitive bidding.”

The Government Accountability Office (GAO) challenged the safety monitoring methods used by CMS and questioned whether beneficiaries were receiving supplies on time and whether adverse health outcomes were resulting from problems accessing testing supplies. Adding to the GAO analysis, the National Minority Quality Forum worked with leading endocrinologists to analyze the data and released an online report in March, 2016 followed by a print article in Diabetes Care, the professional journal of the American Diabetes Association. This analysis indicated that:

“the Competitive Bidding Program disrupted beneficiaries’ ability to access diabetes testing supplies, and this disruption was associated with an increase in mortality, higher hospitalization rates and inpatient costs.”

This article received a lot of attention in the diabetes online community and prompted an initiative by DPAC (Diabetes Patient Advocacy Coalition) urging Americans to contact their elected representatives to #SuspendBidding. Click here to learn more about DPAC’s analysis of the problem and to contact your representatives.

My Perspective:  Rather than stress about my ability to get high-quality testing supplies once I get to Medicare, I decided to contact some experts: people I know with Type 1 diabetes who are on Medicare. I communicated with eleven seniors by email, phone, and/or in person. Some live in Minnesota and others in Arizona.

In general each T1 senior is getting diabetes testing supplies on a timely basis and is able to get their brand-of-choice. Several people buy test strips at local Medicare-approved pharmacies while others purchase them through mail-order Medicare suppliers. Although their Medicare experiences are not without occasional glitches, most of my contacts are satisfied with their ability to obtain testing supplies through Medicare.

Some of the comments I received are:

“It is not as fretful as you may think although some resources are better than others. Type 2’s have a harder time. At the beginning of your Medicare enrollment there may be some stumbling blocks until the required documentation is submitted appropriately by each member of your health care team”

“I am getting all the supplies I need of my choice, excluding CGM.”

“Once I couldn’t get the test strips I use, but it was a temporary thing. They were not able to get them from the supplier…. I get my supplies in a timely matter.”

“I have been on Medicare (with a supplement) for the last 8 years. I haven’t had any trouble with getting pump supplies or strips. My doctor is very cooperative and prescribes what I need.”

“I have never had a problem getting my test strips.”

But all is not perfect. One friend was recently forced to change strip brands, but she was able to select another “name-brand” meter and strip. Another friend has continued to work past age 65 in order to continue receiving CGM coverage.

A few more comments:

“They limit me to 5/day because that’s all I have shown on my logs…. I don’t think my endo has been any help at all.”

“I haven’t had any trouble with Medicare, but I have read about many others who have had trouble.”

“I find the whole medical insurance business so confusing. I have stacks of documents that come in the mail that make no sense.”

Summary:  I am encouraged by the feedback I received from my Medicare T1 friends. At the same time I know that these seniors are a unique subset of Medicare beneficiaries with Type 1 diabetes. They are empowered, well-educated, and reasonably financially-secure. Many of them have had Type 1 for more than 50 years and are used to navigating the US healthcare system to fight for what they need.

I plan to enter Medicare with a stockpile of testing supplies and know that I will need to get my ducks in a row to have the transition go smoothly. I need to remember that there will be bumps in the road along with a definite learning curve. I understand that new rounds of competitive bidding will continue to take place and just because things are fine today doesn’t mean that they will be fine tomorrow.

If you are on Medicare, I’d be interested in hearing about your experiences obtaining testing supplies and any advice you might have navigating Medicare. I have a lot to learn for sure.

Countdown to Medicare with Type 1 Diabetes: 12 Months

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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….

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Please note that Medicare began reimbursing the Dexcom G5 continuous glucose monitor  in 2017. Most of my concerns in the Countdown to Medicare series are still relevant. But the details may have changed by the time you read this post.   Laddie 6/28/18

 

Dear Senator Al Franken:  Medicare and CGMS

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Laddie_Head SquareI have had diabetes since 1976 and will transition to Medicare in early 2017. As most of you know, Medicare does not currently cover continuous glucose monitors for seniors with Type 1 diabetes.

There are companion bills in the U.S. House of Representatives and the U.S. Senate that would require Medicare to change that policy. My Representative Erik Paulsen is a co-sponsor of H.R. 1427: Medicare CGM Access Act of 2015 and one of my Senators, Amy Klobuchar, is a co-sponsor of S. 804: Medicare CGM Access Act of 2015. Unfortunately my other Senator, Al Franken, is not on board with supporting this bill.

Recently I was given the opportunity to work with a consulting firm, HCM Strategists, to share my story with Senator Franken with the hope of influencing him to support S. 804. This is my letter:

Franken Letter

I learned about the opportunity to work with HCM Strategists through a TuDiabetes forum post started by Emily Coles, the Community Director for Diabetes Hands Foundation. She writes:

“Diabetes Hands Foundation (parent organization to TuDiabetes) has connected with a group called HCM Strategists, which does public policy advocacy around health and education. They’re organizing advocacy for Medicare coverage of CGMs, and have asked me to identify some community members who are interested in, and passionate about, this issue. We’re particularly looking for folks who are willing to share their personal stories about how Medicare coverage of CGM affects them.

If you’re interested in sharing your story, or taking a more active role on this issue in some other way, please let me know in the thread below and I’ll connect you with the fine folks at HCM! They are seeking people of ALL ages for this effort.”

There are two ways to become involved. 1) Go to the TuDiabetes forum post and leave a message for Emily. You must be a member of the TuDiabetes community, but it is easy to join and a great place to hang out. 2) Or you can email me and I will share your contact information with the HCM Associate who worked with me.

You will then receive an email from HCM with a series of questions (name, age, diabetes story, CGM use, etc.). Your answers will provide an HCM Associate with the information to draft a letter to your elected representatives. With your approval they will also use your letter as part of their outreach to members of Congress.

This is a unique opportunity to have your voice heard in Washington, D.C. Working with HCM Strategists is straightforward and professional and I urge you to advocate for Medicare coverage of continuous glucose monitors by sharing your story.

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Letter to Al Franken

Corrections – Updates – News

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Laddie_Head SquareAfter the deaths of two children from Type 1 diabetes in July, I published a letter To My Daughters-in-Law. I shared the stories of Kycie and David and provided information about an advocacy group – Test One Drop. I was recently notified that I got part of the story wrong and that some of the information I provided is now out-of-date. I have revised the blogpost with the following information.

Correction:  From various postings on Facebook, I made the erroneous assumption that 4-year old David Brown lost his life as a result of a missed Type 1 diabetes diagnosis. That was not correct. When David was taken to the emergency room, he was immediately and correctly diagnosed with Type 1. Despite a proper diagnosis and intensive medical care, David died of multiple organ failure a few days later. David’s and Kycie’s stories are powerful reminders that despite improved treatments and technology in the 21st century, Type 1 diabetes continues to be a life-threatening condition.

Update:  Test One Drop has updated both its mission and educational poster. The updated mission is:

“to bring awareness to the general public and the medical community of the similarities between the symptoms of Type 1 Diabetes (T1D) and common illnesses such as influenza, strep, and viral infections with the purpose of stopping delayed and misdiagnosed T1D which can lead to life-threatening DKA, t1d-educational-8-5x11_Newpermanent handicap, or death. Additionally, we are seeking a change in the Standard of Care Practices to require medical personnel to screen blood or urine samples for glucose levels before diagnosing sick patients with a common illness that might be masking or mimicking Type 1 Diabetes.”

Please check out the organization’s website and Facebook page. We in the diabetes community mourn the loss of children like Kycie and David. One purpose of Test One Drop is to keep the conversation going when the heartbreaking stories stop making headlines. Download the updated poster and share it with your friends, family, medical team, schools, and community.

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Update on my G5 Upgrade:  In September I wrote about some of the pros and cons of upgrading from my current Dexcom G4 CGM to the recently released G5. Shortly after I signed up for the upgrade, Dexcom ran low on G5 transmitters. Instead of receiving mine in early October, I am still waiting. According to my Dexcom account, the expected ship date is December 1. So the update is “Still waiting. No news.”

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Update on Medicare Coverage of CGMS:  Although not much has yet changed for CGM coverage by Medicare, some progress is being seen in the court system. Here is a link to a recent article at Medscape about Jill Whitcomb’s victory in Federal Court (Level 5 of the Medicare appeal process). I know of one person who won his Level 3 appeal based on the precedent of the Whitcomb case. Unfortunately Whitcomb is still at risk for further appeals by the insurance company.

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Update from the Unconference:  At the Diabetes UnConference in March, I met Daniele Hargenrader. Daniele has lived with Type 1 diabetes for 25 years and is a diabetes and health coach as well as a personal trainer and nutritionist. If you are seeking a way to dig your way out of the diabetes dumps or need a stocking stuffer for yourself or a loved one, you won’t go wrong with Daniele’s new book: Unleash Your Inner Diabetes Dominator. Check out the book as well as the Diabetes Dominator™ website with Daniele’s blog and links to her YouTube interview series. I will be reviewing this book in a future blogpost.DD Book Cover 2

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Last but Not Least News:  I have recently been invited to share some of my blogposts at Diabetes Daily – a well-known diabetes community with 2+ million visitors a year, almost 300K Facebook fans, and 70,000 newsletter subscribers. The posts will be published first on my blog and those with interest to the larger diabetes community will be syndicated at Diabetes Daily. This is a huge compliment for me and I thank all of you who have encouraged me on my blogging journey.

Considering the Dexcom G5 Upgrade

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Laddie_Head SquareFor the first time in my diabetes tech history, I am in the golden upgrade zone. The FDA approval of the Dexcom G5™ Mobile CGM System was announced the same week that my G4 warranty expired. According to Dexcom’s upgrade program, I am entitled to a free upgrade to the G5 system if I purchased my G4 Platinum System with Share before the G5 begins shipping.

It was a no-brainer to order my new G4 system as soon as possible because I never want to run the risk of out-of-warranty equipment failing. Due to good insurance and the CGM rep at Edgepark (yes, I always have great service from Edgepark unlike so many others who report horror stories), my new CGM arrived within a week. At this point I began doing my homework about the upgrade options.

As I learned more about the G5 system, it quickly became apparent that it was not a slam-dunk decision to upgrade. I’ll discuss a few of my concerns below.

Pros of Upgrading

One Less Device:  I joke about diabetic pants and never buy clothes without pockets. I currently carry an insulin pump, glucose tabs, Fitbit, Dexcom receiver, occasionally car keys, and often my phone. The possibility of eliminating the Dex receiver is appealing.

Optional Receiver:  If I don’t like using my iPhone as my receiver, I can always use the G4 Share receiver updated with the G5 software.

Sunlight:  The G4 receiver with its black background is difficult to read in bright sunlight and the red color used for lows is almost invisible. My Animas Vibe pump is even worse and the text is totally unreadable in bright light. My phone has a better display and is easy to see in all light conditions. (Note: Now that I have the Share receiver, I have the option of using my phone without upgrading to the G5, but I would have to carry the receiver.) Because the G5 software upgrade will result in a new receiver display with a white background, maybe it will be easier to read in the sun than the current G4 device.

“Free” G4 transmitter:  Because my current G4 system is working, I have not had to Golden Upgradeopen the new G4 transmitter. I do not have to return this transmitter when I get the G5 transmitters and can keep it as a back-up to use with my current non-Share receiver. This is appealing as I get close to Medicare with no coverage for CGMS.

The Price is Right:  The upgrade is free!

Cons of Upgrading

Expiration of G5 transmitters:  My understanding is that the G5 transmitters will last 3 months and drop dead after 108 days (90 days plus an 18-day grace period). If you have good insurance coverage for CGMS, this is not a big deal. With no CGM coverage, the loss of an extended life for a transmitter can be a big deal.

Bigger Transmitter:  The G5 transmitter has built-in Bluetooth and is bigger than the current slim G4 receiver. It is about the size of the first generation G4 transmitter.

Not Compatible with Animas Vibe:  Although I rarely use my Vibe as a Dex receiver, I like having the option especially when I want a waterproof receiver at the pool or beach. Because Dex transmitters cannot be turned off, it’s expensive to use a G4 and G5 transmitter concurrently. I assume the lack of G5 compatibly will also extend to the new Tandem t:slim G4 combo.

Disadvantages of Phone Receiver:  My phone is much larger than the Dex receiver and doesn’t fit into many of my pockets. Although I use my phone a lot, I do not keep it with me day and night. I have no idea whether the sounds and vibrations of CGM alarms on the phone will be adequate. It will take more button pushes to access BG data on my phone compared to the one-button push of the Dex receiver.

Other Thoughts

Medicare:  I currently have excellent CGM coverage with private insurance. When I move to Medicare in April 2017, I will have to self-fund a CGM unless Medicare regulations change. My guess is that a G4 transmitter with the Animas Vibe or the Tandem t:slim G4 will be the least expensive option because no other receiver is required. As discussed in my April 2015 review of the Vibe, I am not a fan of the Dexcom integration into the Vibe. But it works and is an option. As far as I know, both pumps will continue to use the outdated G4 software instead of the 505 update.

It is possible that under Medicare the G5 will be an equally cost-effective device if I do not need to purchase a new receiver every year. The G5 was approved by the FDA with the requirement that a receiver be provided to new patients. Is that a one-time requirement or will G5 users be required to purchase a new receiver every year when the old one (maybe unused) goes out of warranty?

Staying Current:  New CGM devices are gaining FDA approval at a much faster pace than in the past. It is likely that both the G4 and G5 will be outdated in a few years and maybe my current decision is just not a big deal. With the Animas Vibe and t:slim G4 tied to the G4, my guess is that the original G4 transmitter will be available for many years to come. The G5 may be a short-lived device on the way to the G6 which promises improved accuracy and reliability along with mobile capabilities. Another consideration is what the new Dexcom/Google collaboration will bring to the table.

Decision Deadline:  The Dexcom website indicates that “Upgrade offers are available until 60 days after the first G5 Mobile shipment.” However, I learned that because I purchased my G4 Share system through a distributor (Edgepark), I have only 30 days from the date of shipment to upgrade. I am looking at an upgrade deadline of early October rather than late November. Good thing I asked!

My Decision

I have decided to upgrade and will be sent my G5 transmitters in October. At this point I will upgrade my Share receiver to the G5 software. For the most part I am choosing to abandon my Animas Vibe as a receiver and become more hip by never again being separated from my phone. Frankly I don’t know whether this is the right or wrong decision or if it even matters. Dexcom is making the change incredibly easy and I have just decided to go with the newest kid on the block. If nothing else, I am thankful for having the #firstworldproblem of choosing which CGM system to use. I promise to let you know how it goes.

Can Advocacy Take a Vacation?

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Laddie_Head SquareI haven’t been writing much these days. I was definitely burned out after Diabetes Blog Week but was on the exit ramp before that. I began blogging 2+ years ago and although I am proud of what I have shared about my life with Type 1 and my opinions about diabetes issues, I am starting to feel that I have just about said it all. I am definitely tired of the work of writing and creating graphics for my posts. At the same time I don’t think that I am ready to quit. In my first post for Test Guess and Go, I wrote:

The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes….  And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.

Nothing in that statement has changed since 2013. My Medicare worries used to be about lack of CGM coverage. In mid-2015 I know people with diabetes on Medicare who are no longer able to obtain test strips for name-brand BG meters. I know several women with Type 1 who have had difficulty getting pump supplies on a timely basis. Finding a provider for Part B insulin for pumps continues to be a common difficulty.

Today I am about 20 months away from the transition to Medicare. It is too soon to evaluate my choices about Supplemental and Advantage plans. It is too soon to start hoarding Dexcom sensors and Freestyle test strips because of limited expiration dates. I am trying to purchase pump supplies on a timely basis, but it seems unwise to stock too many supplies because I will be buying a new pump in the fall of 2016.

My hope is to hang on as an active blogger in order to chronicle the journey of moving from a lifetime of excellent private insurance to the scary unknowns of Medicare. I am proud of what has been accomplished at Test Guess and Go by my writing and that of Sue from Pennsylvania and Sue from New York. I don’t want to see Test Guess and Go fade into oblivion.

Lately I have felt guilty that by not writing and actively engaging in diabetes social media that I am not doing “my job.” I am failing in my public persona as a diabetes advocate. I know that I am being too hard on myself and that starting a blog is not a life contract to do it forever.

Advocacy things that I have done in 2015:

I have followed through with every email from JDRF urging me to contact my elected representatives on diabetes-centric legislation. I participated in the campaign for the Special Diabetes Program which was successfully renewed for two years in April with $150 million allocated for diabetes research.

I have contacted my Senators and House Representative to support S. 804: Medicare CGM Access Act of 2015 and H.R. 1427: Medicare CGM Access Act of 2015. Like many people I have been frustrated that this is the 3rd generation of these bills and they are still rated by GovTrack as having 0-1% chance of being enacted. Even if you contacted your elected representatives for the 2013 and 2014 bills, please do it again for the bills of the current legislative session. Remember that Medicare policy trickles down to all insurance and even if you are not age 65, this coverage is crucial for people of all ages with diabetes. It is super easy to do if you go to the JDRF CGM Coverage by Medicare page.

I have joined DPAC (Diabetes Patient Advocacy Coalition). DPAC was co-founded by Bennet Dunlap and Christel Marchand Aprigliano. The purpose of the organization is to unify and streamline diabetes advocacy and make it easy for each one of us to have our voice heard by U.S. decision makers. If you are not yet a member of this group, please read this blogpost by Christel at theperfectD and this post by Sue at Diabetes Ramblings. Then follow the links to join DPAC.

I was fairly active through the first half of 2015 and advocated for DOC programs such as Spare a Rose, Save a Child. I attended the Unconference and generally immersed myself in diabetes stuff.

After writing but not publishing this post, I wrote a blogpost to my daughters-in-law urging them to learn the symptoms of Type 1 diabetes and share the stories of Kycie and David, two young children who recently lost their lives as a result of Type 1 diabetes.

Advocacy things that I have not done in 2015:

I have rarely used my blog to educate and encourage others to advocate for important diabetes issues.

I have continued to read every blog in my blogroll, but in recent months I have left few comments and feel bad about that. Many times I have started a comment and then deleted it after becoming lazy and paralyzed in my thoughts halfway through.

I have been mostly absent from Twitter and #DSMA and #DCDE TweetChats. Obviously it’s not a requirement to participate in things like this, but it is a sign of support to others in the DOC. In general I am not a huge Twitter person and I may start using my age as an excuse to maintain a minimal Twitter presence.

I stayed on the sidelines for the CrossFit issue. On one hand that is good because I didn’t say something stupid and insensitive. On the other hand, I didn’t rush to support the heartfelt posts of my Type 2 friends including Kate Cornell, Sue Rericha and Bea Sparks. A “Like” on Facebook isn’t a sufficient response to seeing wounds of blame, shame, and anger re-opened in the diabetes community.

Moving forward?

For now I am on summer vacation. I’m not mad or sad. You don’t need to comment and tell me how wonderful I am or give me permission to be a bum. I’m just tired of writing and being overly immersed in diabetes social media and I don’t want to feel guilty about that.Vacation Beach I’m still reading blogs and keeping up with Facebook. I’m supporting my friends doing runs and bike rides to raise money for diabetes. I’m still here and for better or worse, I still have diabetes.

Fortunately my blogging malaise has not been accompanied by personal burn-out. My diabetes is difficult these days, but I get up every morning with the optimism that I’ll do better today than yesterday with blood sugars. I’ve ordered a mysugr T-shirt and will wear it proudly while battling my D-monster “Glukomutant.” I’ve been walking a ton (#Fitbit) and working with a personal trainer. I’ve cleaned closets, played golf, read a lot of books, and done some much-needed yard work. I’ve been super-Grandma and spent a lot of time with my four grandchildren.

I have many things to write about, but I don’t want to write. Maybe by giving myself permission to not write, I’ll feel free to start writing again. Maybe. Maybe not. This is not a good-bye, au revoir, adios, or sayonara post. I kind of think of it as:

See you later, alligator. In a while, crocodile.

Making Memories

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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.

Musings on Approaching Medicare

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Sue_HeadSquare2I will turn 65 in May, which means I will be Medicare eligible. I have several friends and family members who thought going on Medicare was a wonderful blessing, because they now had affordable health insurance that also covered extras like well exams and gym memberships. Of course I think that Medicare is a blessing for seniors. However, for Type 1 diabetics who have had use of a continuous glucose monitor (CGM) to give them a continuous readout of their blood sugars, thus minimizing hypo and hyperglycemic episodes, this often meant that they lost whatever health insurance plan they were on, and were forced to go on Medicare. Unfortunately, Medicare presently does not cover CGM’s because they consider it “precautionary equipment”.

Anyone who regularly reads Test Guess and Go and has read Sue from Pennsylvania’s blogs about her husband losing his CGM coverage and his numerous appeals to get it reinstated already knows what a futile effort that is. Thankfully, Sue’s husband was able to get CGM coverage through the Veterans Administration. There is presently a House bill (H.R. 5644: Medicare CGM Access Act of 2014) and a companion Senate bill (S. 2689) that would facilitate Medicare coverage of CGM’s. If you haven’t already done so, please ask your representative and senator to co-sponsor these important bills.

I am somewhat apprehensive as I approach Medicare. I say somewhat, because I am lucky to have retiree health insurance through the school district I worked for, and will be able to continue with this insurance after I go on Medicare. I presently have excellent coverage of my CGM, but at one time I received a denial of coverage, appealed the decision and won my appeal. I am concerned that my insurance plan will follow Medicare guidelines and deny coverage. I will not know until I go on Medicare, so I will have to wait and see what happens, but I am hoping that they will continue to cover my Dexcom CGM. I am continually thankful that I have it, and am amazed at how much my quality of life has improved despite sometimes annoying beeps that warn me of impending high and low blood sugars.

I have been using the Omnipod pump since 2007, my one and only pump. I know that Medicare does not cover this pump, so if my retiree insurance won’t continue to cover this pump I will be forced to use a tubed pump. This is not such a big deal to me as continuing to use the Dexcom.Medicare Questions

If I am unlucky and my insurance plan won’t continue to cover my Dexcom, I will join the hundreds of other senior Type 1’s who can’t benefit from CGM coverage, putting their lives  in danger every day. I pray that we can get more momentum for these bills and get them both signed into law.

If you have not previously contacted your Senators and U.S.
Representative to support CGM Coverage by Medicare, please
click here to go to the JDRF page that contains links and
easy-to-follow instructions to have your voice heard.

A Thank-you Note to Laura C.

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Laddie_Head SquareDear Laura,

We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.

I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.

But Nightscout is not what this letter is about.

I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.

Today I write to thank you for your closing remarks on DSMA ‘Rents:

“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF-  None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.”   (Loc. 55:07)

In the last year and a half, the issue of Medicare CGM coverage has moved to the front page Dear Laura Cof DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.

But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.

So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.

Sincerely yours,

Laddie Lindahl

Test Guess and Go

If you have not previously contacted your Senators
and U.S. Representative to support CGM Coverage
by Medicare, please click here to go to the
JDRF page that contains links and easy-to-
follow instructions to have your voice heard.

The Road to a CGM

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Sue B_Head SquareIf you have been reading my blogs, you will already know who I am. If you have not, here is what I have been doing for the past two years. In June of 2012 my husband Marc became eligible for Medicare. He is a type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Prior to entering the Medicare system, his Continuous Glucose Monitor (CGM) was covered by his private insurance company. Once he went on Medicare, this was no longer true. He was denied coverage of a new CGM when his old one stopped functioning.

We decided to fight Medicare because we really believed that the guideline should be changed for this piece of equipment. There are four levels to Medicare’s appeals system. Levels 1 and 2 are basically rejection letters from the insurance company and an independent company hired by the insurance company to review the insurance company decision. Level 3 is a hearing with an Administrative Law Judge (ALJ). I blogged about the 9-month wait for his decision in a mid-March 2014 blogpost. Unfortunately, that decision was UNFAVORABLE.

We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). Sadly, after a 5 month wait, we got a decision on Saturday, September 20 and the MAC upheld the ALJ decision. Previously we had thought that we would go to the next Level which is an appeal to the Federal Court System. Fortunately this was unnecessary because three weeks ago, the Veteran’s Administration (VA) supplied Marc with a CGM and sensors. My blogpost titled He Finally Got One! give the details of that wonderful milestone.

The Road to Getting a CGMBecause of Marc’s new situation with the VA supplying the CGM and sensors, even had the MAC given us a favorable decision, we would not have been able to accept the CGM though Medicare. But that doesn’t mean that I’m done with my advocacy. I am now going in a different direction and am going to do whatever I can to encourage everyone I know (and don’t know) to please sign the letter urging their Senators to support the Senate bill S. 2689 introduced by Senators Susan Collins and Jeanne Sheehan and the new companion bill H.R. 5644 introduced to Congress by Representatives Tom Reed, Diana DeGette and Ed Whitfield urging support from their colleagues in the Congress. Both of these bills are called the Medicare CGM Access Act of 2014. At the same time, please sign the Petition put forth by the Juvenile Diabetes Research Fund (JDRF) that will go directly to Medicare. Currently there are over 57,000 signatures but we need many more.

Please check out Laddie’s recent blogpost which gives links to easily contact your Senators and Representative and to sign the petition.

Over the past two years that I’ve been advocating for the CGM, I have met many wonderful people. It is because of them (Janice, Mig, Debbie, Dan, Judy, just to name a few) that I have continued on despite being so frustrated at times that I literally felt as if I could not go on any further. I would be totally remiss if I didn’t thank Laddie and Sue for their support as well. Both of them have been my teachers since as I’ve often said “I am not the diabetic”, and I had a lot to learn. I will keep on advocating and doing whatever is necessary until we collectively reach the goal of getting Medicare to change their guideline. I knew this wasn’t going to be a sprint. I knew this was going to be a marathon. And I knew I was in it for the long run. And I will continue to keep on blogging and working to get the guideline changed until the day that I can finally say WE GOT IT DONE.