Medicare and CGM Coverage: Swirling Emotions

If you’ve been following the saga of Medicare coverage for the Dexcom G5 CGM, you know that Medicare beneficiaries will be forced to use the Dexcom receiver while being absolutely forbidden from using smartphones and the G5 and Follow apps. Coding and Coverage information released by Noridian Medicare in March 2017 clearly states this Medicare policy:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Few people in the diabetes community think that this makes sense, but for now it is the rule. Most of us on Medicare are grateful for the thousands of dollars we will save annually by having our Dexcom G5’s reimbursed, but emotions are swirling. JOY for coverage. ANGER at the restrictions. ANTICIPATION that sensors will be shipped soon. DISGUST that seniors are being treated differently. FEAR that no longer can our caretakers track our numbers in real time. SADNESS that we are losing access to our phones and watches. TRUST that this policy will change.

Lately I have been waking up in the middle of the night and stewing about being forced to abandon my smartphone and Apple Watch as Dexcom receivers. I worry about whether I will be able to integrate my G5 into my t:slim X2 insulin pump once the the Tandem software is approved. In the light of day I try to sort through my feelings knowing that I shouldn’t lose sleep over this. Mostly I feel frustration because it is a stupid ruling that I have little recourse to challenge. There is sadness because I really like my having CGM number on my watch. There is the sense of loss taking away something that I once had. And not to be ignored is the spoiled-child syndrome that “I want what I want when I want it!” and it’s unfair that others have it and I can’t.

For the most part anger about this situation is not one of my emotions, but others are frustrated, furious, and ready to do battle. A couple of quotes from Facebook:

“This is a ridiculous and ageist policy and I have said it many times. It’s not right.”

“I find it abhorrent that Dexcom G5 is MEANT to be used with smart technology and ANYONE not on MEDICARE has this option.”

“There is no way I can sign that form. It’s aggressive and hostile and incredibly ageist.”

Another emotion I do not have is fear. I currently neither use the Share app nor need someone alerted to my highs and lows. But others are dependent on a caretaker monitoring their BG levels and their safety is jeopardized with the denial of cell phone use.  Some Medicare recipients have disabilities such as low vision that make the larger screens and adaptability features of smartphones a better choice than the small screen of a Dexcom receiver.

“My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app.”

“Share has saved my life a couple of times on the G4 when I was mowing grass and didn’t hear the Dexcom alarm, but I did hear my phone when my wife called.”

“I don’t feel my Lows and my guy gets the alarm on his phone….This is a *safety issue* in my opinion. If we were totally able to feel things and get through without the chance of conking out we wouldn’t even need the darn CGM.”

“I have retinopathy of prematurity and have always had bad vision. Seeing my Dexcom readings on the iPhone is much easier than on a small receiver.”

My Thoughts and Things to Remember:

When my reasonable brain takes control, I know that I will survive using my Dexcom receiver. That is all I had for the first seven years of my nine years using a CGM.

I don’t have medical reasons that my iPhone and Apple Watch are better than my receiver. In fact I prefer dismissing alerts on the receiver because I can just push the button and not even look at the number! BTW that is a bad thing…. On the phone, I need to scan my fingerprint, tap on the alert, and go to the Dex app to dismiss it. I will miss automatic syncing of my G5 numbers to Dexcom Clarity, Tidepool, mySugr, and other apps, but I will survive.

My blog was started in the spring of 2013 and quickly became known for advocacy for Medicare Coverage of CGM’s. If at any point we had been offered the possibility of CGM reimbursement contingent on no smartphone use, we would have jumped at the chance. What we’ve got now is not perfect but it is thousands of dollars per year better than nothing.

Right now I think a lot of my stress comes from just not knowing what is going on. Through the early months of working out the logistics of Medicare, Dexcom did not do a good job of communicating with seniors. Some people were getting email updates. Others of us called Dexcom numerous times to be put on “The List” and never received any information. Seniors are still being told different things by different representatives from Dexcom, DME suppliers, pump companies, and medical professionals. Fortunately there is now some information on the Dexcom website but it does not answer all of my questions. I will definitely have an easier time coping once I know the rules of the game along with hardware and software modifications.

For the most part I am resigned to the Medicare restrictions and am working to accept them. In the short run I think we need to get Medicare reimbursement established before fighting the smartphone ban. Others disagree with me and are making calls, writing letters, starting petitions, and even hiring lawyers. And that is good because although patience is sometimes the best strategy, other times anger and in-your-face advocacy are the only way to force change.

Right now I know that whatever the policy ends up being, I will adapt. I haven’t used a receiver in years, but I’ll get used to it again. I can’t live in fighting mode all of the time and right now need to find acceptance. Although I know that I will eventually take my place on the battlefield fighting Medicare CGM policies, at the moment I am choosing to let things take their course and trust that Dexcom and JDRF will get this changed. At the same time I am cheering on those actively opposing Medicare. One online friend sums up my views perfectly:

“A year or two ago we were all writing letters to our Congressmen to get on board with a bill to have Medicare pay for the Dexcom. Now that is is approved, I’ve decided to let go of any anger and resentment (never does a diabetic good anyway) and am thankful for the approval and the fact that I won’t be paying out of pocket anymore, despite the absurdity of Medicare’s restrictions. However, I will still work in any way I can to change those restrictions if possible.”

Another senior stated it even more succinctly:

“It is what it is. You want Dexcom through Medicare? You sign the form.”

Amen.

 

Note: This blogpost only addresses the smartphone ban for Medicare coverage of the Dexcom G5. There are other problematic policies such as only 2 test strips per day being provided to CGM users. Those issues are in the wait-and-see category and worthy of discussion another time.

Medicare and CGM Coverage: Love Your Receiver!

Laddie_Head SquareI was surprised, thrilled, elated, stunned, relieved, and every other adjective that you can think of when I received Friday’s mass email from Derek App, JDRF President, with the breaking news:

CMS Labels Continuous Glucose Monitors as Durable Medical Equipment

JDRF is pleased to share that the Centers for Medicare & Medicaid Services (CMS) decided today to recognize continuous glucose monitoring (CGM) devices approved for use in making diabetes treatment decisions as durable medical equipment, a significant step toward making them eligible for coverage under Medicare. Today’s decision lays a pathway toward extension of Medicare coverage for the devices that will bring the nation’s largest insurer in line with the vast majority of the country’s private payers. Although the significant benefits of CGM use have been known since 2008, CMS had previously refused to consider covering the devices under Medicare, saying they did not meet the statutory definitions of durable medical equipment or any other category the agency could cover. Today’s decision removes that impediment.

In recent years I have wavered between optimism and pessimism as I advocated, hoped, and prayed for Medicare coverage of continuous glucose monitors. Now it looks as though the day is coming! I don’t know how long it will be before procedures are in place for receiving reimbursement, but it will be soon. Soon may mean later in 2017. Soon may mean 2018. But there is finally a path in sight for Medicare reimbursement of CGM’s.

Today I read through the 15-page CMS Ruling with a yellow highlighter. You will find some of the specifics of the report well-described in Mike Hoskins’ Diabetes Mine article:  NEWSFLASH: Medicare Will Cover Some CGMs Now! Below I will expound on a couple of Mike’s points and then talk more about the specifics of durable medical equipment.

Dexcom Only: This ruling only applies to the Dexcom G5 because it is the only CGM approved by the FDA for insulin dosing. Therefore the G5 is the only system that fits the definition of a “therapeutic CGM.” Currently CGM systems by Medtronic have not been approved for insulin dosing and are considered “non-therapeutic.” They do not fit the definition of Durable Medical Equipment (DME).

No Guarantee of Coverage: This ruling only states that therapeutic CGM systems fall within the scope of Medicare Part B DME. There has not yet been a national coverage determination to guarantee approval if one satisfies still-to-be-determined coverage criteria. Right now MAC’s (Medicare Administrative Contractors) have the option of issuing local CGM coverage determinations or coverage may be obtained on a claim-by-claim basis. What does this mean? We will learn as Medicare beneficiaries begin filing claims for CGM coverage. You can bet that I will apply for coverage as soon as possible after starting Medicare in April.

All Types of Diabetes: Just as people with all types of diabetes are able to receive coverage for home BG monitoring, all PWD will be eligible for CGMs according to this ruling. Don’t get too excited because IMO the coverage criteria will most likely restrict reimbursement to some people with Type 1 diabetes and some insulin-using Type 2’s. Just as it is more difficult for Type 2’s to obtain coverage for insulin pumps, it may be more difficult for them to obtain CGM coverage. But this is still an improvement over the 2015 congressional bills (S.804 and H.R.1427) that specified Type 1 diabetes.

One thing not addressed in Mike’s article is how the Dexcom G5 fits into the Medicare definition of Durable Medical Equipment (DME).

According to the CMS ruling, there are 5 criteria which must be established in order for a device to considered as DME:

  • Can withstand repeated use;
  • Effective with respect to items classified as DME after January 1, 2012, has an expected life of at least 3 years;
  • Is primarily and customarily used to serve a medical purpose;
  • Generally is not useful to a person in the absence of an illness or injury; and
  • Is appropriate for use in the home.

Home blood glucose meters and supplies have been in this category for a long time. Technically the meters are “durable” and have an expected life of at least 3 years. For “multicomponent” systems, the other components are covered as long as one component (the meter) is “durable.” Therefore test strips are covered because they are an integral part of the system.

Looking at the Dexcom G5 system, CMS quickly specifies that sensors with an expected life of 1 week are not durable. Neither are transmitters with an expected life of 3 months. So we are left with the receiver. According to CMS, “reliability analysis data from an engineering firm that evaluated the receiver component of the recently approved therapeutic CGM predicts a lifetime of greater than 3 years for the receiver.” CMS goes on to say that the receiver “is the only component of the therapeutic CGM that can be considered durable and satisfy the 3-year MLR criterion of the definition.”

What does this mean? It means Love Your Receiver!!! Without the receiver, the Dexcom G5 system does not satisfy the criteria for DME.

dexcom-love-your-receiver

The FDA approval of the G5 system required the purchase of a receiver and many people complain about that requirement since they use their phones as the receiver. Just know that CMS is never going to classify your phone as a reimbursable medical device, so cherish your receiver even if you never take it out of the box. If you’re not on Medicare, still cherish your receiver so that seniors can receive CGM coverage! Also Medicare coverage of CGM’s is important for everyone because it is a vital component to coverage of artificial pancreas systems.

In the coming weeks and months, we will learn more about the implementation and impact of this CMS ruling. If you’d like to learn more, here are a few links.

Text of CMS Ruling

Diabetes Mine Analysis  

Diatribe’s Preliminary Analysis

Expanded Statement from JDRF

And no matter what, don’t forget to Love Your Receiver!

 

Healthy Lunch Day

Laddie_Head SquareI have been a quiet blogger this November and done little to advertise or celebrate diabetes month. I was an active participant in the Big Blue Test but that was all behind the scenes. I have read the wonderful blogposts by other diabetes advocates and  chosen not to feel guilty for my lack of participation.

This morning I received an email from Chelsea at the American Diabetes Association asking me to participate in the second annual Healthy Lunch Day which is celebrated today. Easy enough because I eat lunch almost every day and it is usually a “healthy” meal!

A salad is my most common lunch and today was no exception. The base was a Mann’s Power Blend containing Brussels sprouts, Napa cabbage, kohlrabi, broccoli, carrots, and kale. I topped it with raspberries, leftover cooked broccoli, a hard-boiled egg, and a yogurt-based dressing. I guessed the carb count to be 18 grams and bolused accordingly.

fullsizeoutput_1a22I tend to spend two or three hours each afternoon at my kitchen table “desk” and like to avoid BG spikes with a lowish carb lunch. I go heavy on vegetables and berries to make up for my oatmeal breakfast that has nothing green or colorful.

So here’s to #HealthyLunchDay and the ADA’s November theme of #ThisIsDiabetes. My lunch was healthy and I have diabetes, so it’s a perfect fit!

Countdown to Medicare with Type 1 Diabetes:  5 Months / Anxiety

Laddie_Head SquareThere are frequent online discussions about addressing mental health issues along with physical concerns when living with diabetes. I am lucky to be mostly immune from things like diabetes burnout and depression. I don’t like diabetes but it doesn’t haunt or slow me down much. I come from a family with a history of depression but its dark clouds have never settled over me for very long. Still…

I have a tendency towards anxiety. The kind of worry that radiates in my chest and aches in my belly. It has never been so crippling that I have felt the need for professional help and I have been helped by progressive relaxation tools I learned from a book many years ago. Deep breathing and exercise also help.

I am very in tune with my anxiety. It surfaces when I need to make a decision or address a problem and I don’t feel in control. Sometimes the issues are trivial or at least very fixable, but my rational brain can’t convince my gut that I shouldn’t be stressed. I won’t call them silly, but my anxiety worries are not life-or-death. Maybe it is a leaky roof. Maybe it is a grandchild getting her feelings hurt. Maybe it is Christmas. Maybe it is thinking about what needs to be done to sell our house and we don’t even plan on selling the house.

Maybe it is Medicare.

I have been trying to get a handle on Medicare options for several months. I haven’t decided whether I know too much or not enough. I wake up many nights at 2:00AM and start thinking about Supplemental versus Cost* plans. I walk the dog and my stomach cramps thinking of Competitive Bidding. Part B insulin and test strip brands are a constant concern. This stuff is important, but not so important that I should be losing sleep.

But anxiety does not always make sense.

I finally have premium costs and plan information for 2017 and I am making worksheets to compare my options. I have only one decision that could have an impact beyond my first year on Medicare and that is the Supplemental versus Cost plan decision. Supplemental (Medigap) policies are only required to accept me (a person with pre-existing conditions)countdown-to-medicare-5-months during the first 6 months that I am on Medicare. After that I can be denied coverage or charged higher rates. At the same time there are guidelines about having guaranteed Medigap rights and some of those scenarios will grant me needed flexibility in the future.

The things that stress me are discrepancies like one plan agreeing that insulin for a pump will be covered under Part B and a similar plan saying it won’t. (That can be a big deal because Part B insulin does not go into donut hole calculations.) I think the plan saying no is wrong, but what do I do about it and do I dare risk signing up with that company? I need to consider that company because it happens to offer CGM coverage. Yes, I am lucky to have the option of CGM coverage with one plan! But I need to consider the whole package, not just one thing. More homework to do.

Another thing that is stressful is trying to figure out what pump and testing supplies cost. For the most part I have been using the negotiated prices from my current BCBS policy. But one friend shared his test strip cost info with me and it looks as though he is paying 20% of what I consider a high retail price compared to what a negotiated price should be. Am I right? Right or wrong it certainly makes me wonder what prices I should be using to figure out my anticipated costs.

Another thing that kicks me in the gut is competitive bidding. This is only relevant if I choose a Supplemental plan because Cost plans use their own suppliers. DPAC has published a couple of blogposts recently that scare the bejesus out of me. One post was written by a person with diabetes on Medicare and the other was written by someone who owns a durable medical equipment company. These are great articles to spur advocacy, but frightening for those of us anticipating Medicare.

One benefit of participating in the DOC is that I have support from other people affected by diabetes. A downside is that I read stories of people having nightmare experiences with Medicare. As a blogger, I get emails from readers sharing their stories and problems. At the same time I know many people with Type 1 who are doing fine on Medicare but those people don’t write much about their experiences. I mostly hear the bad stuff.

anxiety

I have anxiety. Some of it is unreasonable. I live in Minnesota and have several good (not perfect) options for Medicare. My husband still works and his income will provide a buffer from the shortcomings of Medicare. At the same time some anxiety might be reasonable because healthcare reimbursement at all levels in the United States is under siege and people with diabetes are getting hit particularly hard.

I expect that my next Countdown to Medicare post in December will outline some specifics of my choices. Obviously cost is a major concern, but so are things like drug formularies, test strip brands, and requirements for getting pump supplies. I have already eliminated choices that do not network my current doctors and I am looking at the plans of two different companies. It is likely that I will choose a plan that allows me to avoid competitive bidding because anyone with a tendency towards anxiety might not survive that disaster.

More to come. 😀

*

**Minnesota is one of very few states that offers Cost plans. These plans are hybrids that combine features of traditional Medicare and Advantage plans. Most people reading this post will not encounter Cost plans in their Medicare journey.

A Diabetes Data Machine

Laddie_Head SquareI am currently involved in a couple of projects that require tracking my diabetes data. The good part is that some of the data is automatically logged with little or no input from me. The bad part is that I am using 3 different apps on my phone and must enter food information twice. The good part is that I have learned new things about my diabetes. The bad part is that I am uber-involved in the input of data and not paying much attention to the output.

Big Blue Test

Most of you are familiar with the Big Blue Test sponsored by the Diabetes Hands Foundation. Every test logged between October 14 and November 14 will result inBig Blue Test Logo a $3 donation to support people with diabetes. Three charities will receive $5000:  Diabetes Sisters, We Are Diabetes, and the Riverside Community Diabetes Collaborative.

The Big Blue Test is by far the easiest of my current data projects. I use the app on my phone and it’s a quick 30 seconds to record my exercise. Although participation is easy, I am no Big Blue Test slouch. Yesterday I managed to input 5 (!) tests. Dog walk. Gym session. Rake. Rake again. Dog walk. That translates into a $15 donation for diabetes.

If you are participating in the Big Blue Test, keep up the good work. If you are not involved, check out this link to learn more. It’s not just walking and running. You can include housework, yard work, weight work, and dancing. You can help a couple of diabetes groups while receiving the physical and mental benefits of moving your body. Sounds like a win for all.

mySugr Consulting

I continue to be a beta-tester for the mySugr consulting module. As outlined in my September post, mySugr is launching a feature to allow virtual coaching from Gary Scheiner and the team at Integrated Diabetes Services. You can learn more about themysugr-copy program here and here.

Today I am not addressing the coaching experience except to say that Gary Scheiner does a better job of understanding my D-data than I do. Instead I am writing to share that amazingly I am still logging after 3 months!

I am still learning shortcuts for entering my data and have reduced the number of data points I am tracking. I continue to enter food and carb counts, but don’t classify the food anymore as vegetable, meat, etc. Similarly I am not distinguishing between food and correction bolus amounts, just total insulin. What I like about mySugr is the ability to customize my logbook to show only the data points that are important to me and to list them in an order that makes sense to me.

My newest “cool” discovery about mySugr is that if I use the workout app on my Apple Watch, it automatically transfers the activity to mySugr. Another diabetes/life datapoint automatically logged!

Glu and T1D Exchange

Glu is the patient community of the T1D Exchange and provides an easy way to participate in research relating to type 1 diabetes. I am currently part of a study about blood sugar results and treatment satisfaction for T1 adults using pumps or multiple daily injections.blip_logo

The logging requirements of this study are not difficult because most of my data goes into Tidepool’s Blip. If you don’t know about Tidepool and their innovative diabetes apps, check it out here. I download my Animas pump and Freestyle meters once a week. My Dexcom CGM automatically links with the Blip Notes app on my iPhone. My only daily responsibility is to create a Blip note whenever I eat. I click on #food and record the meal with the carb count. To make it easy, I copy and paste the meal info just entered into mySugr. Takes 30 seconds or less.

Where to from here?

The Big Blue Test ends November 14.

The mySugr logging has no end date and I’ll keep at it a while longer. But not forever.

The T1D Exchange study lasts 4 weeks.

I have learned a lot from this intensive logging. I tend to eat a little bit all of the time and now have visual proof that my BG is better when I eat more at meals and reduce snacking. I have done some basal testing and am seeing better CGM tracings. Better basals allow for less snacking.

But I am tired of logging. My head is exploding with numbers and my brain is drowning in data. I am thinking about diabetes too much and will be happy to quit recording my life in a couple of weeks. Being a diabetes data machine is fine for a while, but for me the benefit gets lost when I do it too long. For sure I will quit before Thanksgiving because there is no way I want to start the holiday season being accountable for my food decisions….

 

Thoughts on Patient Empowerment

Laddie_Head SquareI recently read two articles by Dr. Niran S. Al-Agba, a pediatrician in Washington State and blogger at MommyDoc. I discovered her posts through KevinMD.com and have added her blog to my Feedly list. As a grandmother with 40 years of Type 1 diabetes, you might wonder why I plan to follow the writings of this young pediatrician. I think it is because her thoughtful views on the roles of patients and physicians in our healthcare system (or lack thereof?) give voice to some of my opinions and experiences.

The first article I read was titled “Building Better Metrics: Focus on Patient Empowerment.” Mid-article Dr. Al-Agba writes something that many of us who use insulin believe is essential: “Patient-centered care is often talked about as a virtue worthwhile to attain because it puts them at the heart of their healthcare team. Empowerment goes one step further by actually giving power and authority to the patient.”

She goes on to share the characteristics of an “empowered activated patient” as listed by ENOPE (European Network on Patient Empowerment):

  • Understands their health condition and its effect on their body.
  • Feels able to participate in decision-making with their healthcare professionals.
  • Feels able to make informed choices about treatment.
  • Understands the need to make necessary changes to their lifestyle for managing their condition.
  • Is able to challenge and ask questions of the healthcare professionals providing their care.
  • Takes responsibility for their health and actively seeks care only when necessary.
  • Actively seeks out, evaluates and makes use of information.

I don’t know about you, but I believe this list describes me and many of us living with diabetes. At least most of the time.

The second article by Dr. Al-Agba is titled “Building Better Metrics: Patient Satisfaction Can Be Done Right!” Building on the first article, she writes that physicians are often more comfortable with “standards of care” and need to become more comfortable in the role of giving information, sharing options, and empowering patients to take more control. She goes on to discuss that sometimes that means disagreeing with a patient’s decision while respecting the right of the patient to make that decision.

That idea really hit home for me based on a recent experience with a new physician. My longtime internist retired this summer and suggested that I follow one of his younger partners to a nearby clinic that is part of a large provider system. Until now all of my doctors have been part of independent clinics. Such practices are starting to be an anomaly in big cities and I was not opposed to moving into a “system.” I knew that it wasdoctor-patient-respect probably a good idea to narrow my network of doctors as I look to future health insurance and Medicare restrictions.

In August I had my annual physical with the new internist. He asked several questions and for the most part seemed to accept my answers. Many queries seemed to be coming from a computer-generated checklist which I suspect was labeled “Old Lady with Diabetes.” I had to fight the urge to say “Hey, that’s not me!”–because of course that is me. Our only area of conflict was over statins which I have resisted up until now. In May I wrote about my previous doctor’s support for my decision to avoid that class of drugs. I felt a bit bullied by the new doctor but given that it was his first week in the new system, our first meeting, and already an overly long appointment, I decided to let it go. And I agreed to give statins a try.

Two months later I am experiencing clear side effects from the statin drug and have chosen to stop taking it. One thing that I love about my new medical system is a complete online health record along with the ability to send secure messages to my health team. I was able to share my statin decision without talking to anyone or feeling that I was hiding something from the new medical team. I wrote several drafts of the email and believe that I ended up with a respectful but confident and empowered message.

I did not get a reply to the message nor did I expect one. I am sure that it will be a item of discussion next time I see this doctor. I am very comfortable with the idea that he can strongly disagree with my decision. However, I need to feel that he respects my right to make that decision. If not, I will look for a new internist. However, based on most of the August appointment, I am optimistic that as we get to know each other, we will do just fine. Fingers crossed.

Friday Notes

Laddie_Head SquareYesterday was a busy diabetes day. In addition to just having diabetes (and believe me, that’s enough!), I attended an advocacy training program sponsored by the American Diabetes Association (ADA) and there was a vote by an FDA Advisory Committee regarding the Dexcom G5.

Number #1: My DiabetesNothing momentous to say about my diabetes except that yep, I’ve still got it. I had a big unexpected BG spike after a restaurant salad lunch. Maybe there was hidden sugar in the salad dressing. Maybe my glass of wine decided to be a problem. Maybe it was the mid-morning peanut snack dosed with an extended bolus. Maybe it was because it was 90+ degrees outside with off-the-chart humidity even though I was comfortable inside with air conditioning. Maybe it was because it was Thursday. This is the sort of stuff that makes it a miracle that those of us dealing with Type 1 even have a modicum of sanity left in our lives.

Number #2: ADA Advocacy Training:  I attended a late afternoon Advocacy Training seminar sponsored by the American Diabetes Association. I found it to be very empowering and in a moment of bravado, I signed up to be available for in-person office visits to my congressional representatives. I am a confident advocate when writing, but speaking and putting myself “out there” border on terrifying.

The ADA has a good app for advocacy and I suggest that you check it out. It provides information on national and state advocacy priorities and links to easily become involved in ADA advocacy. Search for “Diabetes Advocacy” in the app store.IMG_0298

Because Scott Johnson was the reason that I knew about this seminar, I can’t say that it was a surprise to run into him by the Diet Coke cooler. But it’s always a pleasure to see Scott.IMG_0295

Number #3: FDA and Dexcom G5:  I was pleased to receive an email from Bennet Dunlap of DPAC sharing news from yesterday’s FDA Advisory Committee meeting on Dexcom G5 labeling. The panel voted 8-2 to recommend approval of a G5 labeling change to allow insulin dosing without a confirmatory BG meter test. The FDA will have to make the final approval, but it is likely that the advisory committee’s recommendation will be accepted. This change should help justify Medicare coverage for CGM’s as well as expand the use of CGM to more patient populations.IMG_0932

That’s it for today. Have a good weekend!

 

Consistent Inconsistency

Laddie_Head SquareIt’s now Day 4 of Diabetes Blog Week and the homestretch is in sight. I am starting to fade a bit when it comes to daily writing and reading about diabetes. Fortunately I’ve read some great blogposts this week and am inspired to make it to the finish line. Today the subject is healthcare and our fearless DBW leader, Karen Graffeo of Bitter-Sweet™, has given us permission to get grouchy. Right now I have good doctors and good insurance. Not everyone else is as lucky.

Today’s Topic:  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Wow. I think that those of us with diabetes could write an encyclopedia on this topic. The thing that bothers me the most about the healthcare system in the United States is the consistent inconsistency of it.

New year ==> New Insurance plan ==> Used Humalog last year. Forced to switch to Novolog.

New job ==> Different insurance company ==> Current endocrinologist is now out-of-network.

Same year ==> Same insurance plan ==> Won’t cover my brand of pump anymore.

Next-door neighbors with Type 2 diabetes  ==> My insurance reimburses diabetes education ==> Yours doesn’t.

Next-door neighbors with same income ==> You work for a large corporation and pay $500/month for health insurance ==> I am self-employed and pay $1000/month for similar insurance.

An insurance company pays my dentist $75 for an office visit ==> I don’t have dental coverage and must pay $135 for the same visit.

I have my 65th birthday ==> When I was 64 I had full insurance coverage for a CGM ==> Now it is considered “precautionary” and not reimbursable.

I could go on and on but it would drive me crazy. What worries me most about our healthcare system is that it is going to get worse before it gets better:-(

*****

To read more posts on this topic, click here.

Message Monday

Laddie_Head SquareWelcome to the 7th year of Diabetes Blog Week. This is my 3rd time participating and I swore I wasn’t going to do it again this year. Why? Because I get totally burned out by writing blogposts every day and trying to read the posts of 100+ participants. Somehow I am incapable of staying low-key during the week and always overdo it. So why am I here? Because Diabetes Blog Week links me to voices of diabetes from all over the world. At the end of the week I will feel exhilarated after meeting new bloggers and catching up with those whom I already “know”. I’ll learn more about myself and my diabetes as I tackle the topic list. On Friday I will be proud that once again I have survived Diabetes Blog Week! As always, thanks to Karen Graffeo of Bitter-Sweet™ for organizing everything.

Today’s Topic:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

When I started my blog in 2013, I wrote:

“The DOC (Diabetes Online Community) has become a family to me…. I think there is room for my voice in the DOC and I hope that I can help and inspire others  in the way that I have been helped and inspired by others…. I hope to use my blog to chronicle my journey through life with diabetes. Many of my posts will be reflections on the last 36 years as well as my opinions on current issues.”Blah Blah Blah2_DBW

That is typical blah for mission statements and I could easily write the same words again today. The main change is that it’s now been almost 40 years of diabetes.

I wrote one sentence in my first blogpost that seemed innocent at the time. It has morphed into one of the main reasons I continue to blog.

“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.”

Talk about the understatement of the year. I predicted that the Affordable Care Act (ACA) would bring me lower premiums and worse coverage. Wrong! I still have good coverage for diabetes expenses, but my premiums have almost doubled and they were expensive to begin with. Many DOC friends have fared far worse with huge increases in premiums and deductibles along with difficulty obtaining needed supplies and medications. Insulin prices have soared and for each insurance company mandating Humalog, there is another one requiring Novolog. The recent UnitedHealthCare mandate for Medtronic pumps is symptomatic of a broken healthcare system that increasingly devalues patients and results in huge profits for insurance companies, pharmaceutical/durable medical companies, and middleman wholesalers.

I also mentioned Medicare in my first blogpost:

“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.”

I am now counting down the months until Medicare. I am proud of my gray hair and feel strongly that I would like Test Guess and Go to become an information and advocacy resource for seniors with Type 1 diabetes. CGM coverage is one of the most visible battles but it may be just the tip of the iceberg with programs like Competitive Bidding threatening choice and access to needed supplies.

In three years of blogging I have been learning how to advocate. I know that I am a better writer than speaker. I know that I prefer one-on-ones to larger advocacy forums, but I am trying to grow. Regardless of where my senior years take me, Type 1 diabetes will be there and there is no reason to fight that. I don’t know how long I will continue to blog, but I’m not ready to quit yet.

*****

To read other Diabetes Blog Week posts on this topic, click here.

Access Matters: My Statement for DPAC

Laddie_Head SquareIn order to amplify the voices of those of us who oppose the recent mandate by UnitedHealthCare to cover only Medtronic pumps, DPAC (Diabetes Patient Advocacy Coalition) is asking everyone affected by diabetes to share their story. Follow this link to help DPAC gather “stories to share publicly within the community and, perhaps more importantly, within the healthcare and legislative communities.” Your voice will help prove that #DiabetesAccessMatters and will advocate for #MyPumpChoice and #PatientsOverProfits.

I don’t know whether my experiences will help because my diabetes narrative is that of a “privileged patient” who has always had access to prescribed insulins, meters, pumps, and CGM’s. How do I prove that access and choice have made a difference?

My Story as Submitted to DPAC:

I have had Type 1 diabetes since 1976. When I was diagnosed there was no home blood glucose monitoring and I took 1 injection of insulin per day. My chances for a long healthy life were minimal and complications such as blindness, amputation, and kidney disease were seen as almost inevitable.

Today I am 64 years old. I have gray hair and am stiff from arthritis, but my eyes are fine. My body has bruises and rashes from pump and CGM sites, but I have no numbness in my feet and my kidney function is fine. I rarely have a day without lows requiring glucose tabs, but I have not needed my husband to fetch emergency orange juice since starting the Dexcom G4 in 2012. My lab tests are good and my cardiac function tests are excellent.

So what happened?AccessMatters

Hard work paid off. Lucky genes probably helped. But what is most important is that I had ACCESS.

ACCESS to medical professionals who learned through the Diabetes Control and Complications Trial (DCCT) that controlling blood sugar results in better health for people with Type 1 diabetes.

ACCESS to new and improved insulin products as they were brought to market.

ACCESS to the newest technologies which began with home BG meters in the early 1980’s and expanded to insulin pumps and continuous glucose monitors (CGM) in later years.

ACCESS to education about how to optimally manage my diabetes.

ACCESS to social support through the DOC (Diabetes Online Community).

Along with access, I had CHOICE.MyPumpChoice

When my internal medicine doctor was unqualified to prescribe a pump, I CHOSE to switch to an endocrinologist.

After experimenting to prove that the blood glucose monitor I was using was unreliable, I CHOSE to switch brands to a meter which provided more consistent results.

When my endocrinologist and I agreed that my diabetes could be better managed with an insulin pump as opposed to injections, I investigated my options and CHOSE the pump that I believed would give me the best results.

When my doctor prescribed a CGM to combat my hypo-unawareness and extreme lows, I CHOSE to give it a try.

After a few years of failure with the CGM brand that I selected, my doctor and I worked together and CHOSE the competing brand.

I am incredibly lucky to have always had good insurance. I have had access and I have had choice. Many years ago my insurance was provided as one of my husband’s work benefits. The cost to us was minimal. Today I pay huge insurance premiums, but I still have access to the medications and durable medical equipment (pump and CGM) that my endocrinologist and I choose.

An insurance company is in business to make money and does not have a license to practice medicine. Once I pay my premiums, access and choice should be in my hands and those of my medical team. The idea that UnitedHealthCare has the right to change its policies on insulin pumps mid-year and mid-contract is wrong. Big players in the game making deals to reduce competition and limit choice should not be allowed.

How do I prove that ACCESS and CHOICE have made a difference in my life with diabetes?

I look in the mirror.