What I Need/Want/Deserve

Laddie_Head SquareOn Sunday April 6 The New York Times published an article by Elisabeth Rosenthal titled Even Small Medical Advances Can Mean Big Jumps in Bills.  A friend without diabetes alerted me to the article and I read it along with the comments. For the most part I avoided social media for the rest of the weekend and had time to stew over my reactions to the article.

On one hand it was good to see Type 1 diabetes highlighted by the media.  Parts of the article were correct, but other parts made me feel uncomfortable and marginalized. I work hard to control my diabetes and I have been quick to give credit to my pump and CGMS for greatly improving my health and quality of life. I have no major complications and after my hospitalization at diagnosis in 1976, I have never been hospitalized except for childbirth. I thought that was a good thing.

Although I realize that my day-to-day medical expenses are high, I have been a “cheap” patient when it comes to acute care. Even my chronic care expenses do not surpass the total of my insurance premiums and my high deductible. Insurance companies are not making money on me, but they’re not losing their shirt either. That doesn’t mean that I could have gotten along equally well without insurance. My biggest financial benefit of having insurance is getting access to insurance-contracted rates. The insanity of our healthcare system is illustrated every time I see an EOB (Explanation of Benefits). Without insurance I would pay two or three times what my insurance pays for any procedure, lab test, or office visit. But that’s a topic for another day.

Most of you have already seen this excerpt from the article:

That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific.

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts.

 If you want to understand at my outrage/disappointment/fear at these comments and the whole article, please check out Kelly Kunik’s letter at her blog Diabetesaliciousness.  For some other well-thought out responses to this article, check out Amy’s post at Diabetes Mine and Bennet’s letter at Your Diabetes May Vary. Or just explore the DOC and you’ll find other great posts on this subject.

I have a few things to confess talk about here. Throughout most of my diabetes career, I have been considered a model patient who is compliant and all of those other adjectives that can be tossed about. One of my endos once told me that “You can get anything to work”. In a sense, I can and have. But the idea of going back to NPH and Regular or a once-a-day Lente injection is terrifying. I rarely make it through a night without at least two or three alarms from my Dexcom that my BG is too high or too low. I use my pump for multiple .25 or .375 corrections every day. That’s impossible with a pen and extremely difficult with a syringe.

But I could survive if I went back to syringes and vials. I don’t know whether I would have more complications than if I had never gone on the pump. I have had approximately the same A1c while pumping that I had with Lantus and Humalog injections, but my highs are not as high and my lows are not as low. I spend much more time in my “target range” and I feel much better. I believe that I am safer because my insulin delivery is more precise and predictable.

Although I have used various CGM devices for over 5 years, the Dexcom G4 has been the most life-changing. In the last year and a half with my G4, I have not once needed my husband to help me with a hypoglycemia episode. I have not wandered around a strange hotel room in the middle of the night desperately trying to find something to eat and then trying to figure out how to chew and swallow. I have hiked hundreds of miles without requiring a Glucagon injection. Bad golf scores have been the result of my bad golf swing and not the result of BG readings in the 30’s and 40’s. My only interaction with firemen/paramedics has been taking my grandchildren to see the firetrucks and ambulance.

Is a pump and/or CGM a luxury “gadget” for me?  The first night in July without my Dexcom when the transmitter died, I woke up with a BG reading of 37. But at least I woke up. If my pump is denied by insurance, will an uninsured T1 diabetic get access to insulin? If I had to choose between my pump and my iPhone, what would I choose? (My Pump.) Should children get access to artificial pancreas technology while senior citizens can’t get CGM coverage by Medicare? If I lived in a country such as the U.K. with national health insurance, would I even qualify for a pump or CGM? What would my current health status and the cost of my care be if I were still checking my urine to determine my BG control and taking only one injection of Lente per day as I did in 1976? Would I still be alive?

I don’t know.

These are important questions.  As I get closer to Medicare age and our country moves closer to universal healthcare, I realize that not every decision related to my diabetes care with be in my favor. No healthcare system will ever have enough money to give Cadillac care to every individual at every stage of life with any health issue and despite unknown return on investment for that care. Some of the toughest questions that must be addressed are:

  • How do we measure value?
  • At what point are increased costs not justifiable in comparison to increases in quality of life and health status?
  • Are these decisions death panels or a reasonable allocation of limited resources?
  • Is it short-sighted to limit access to pumps and CGMS and then willingly pay for dialysis and amputations?
  • How do we decide between keeping 16-week premature babies alive while denying tests strips to millions of people with Type 2 diabetes?
  • Should there be an age limit on joint replacements and organ transplants?
  • How can drug and device companies develop better technology and improved pharmaceuticals if these products are not reimbursable expenses?

Measuring ValueI think that each one of us could add multiple questions to that list. The patient profiled in the NYT article concludes that “You want me to be able to afford good treatment…Because otherwise I end up disabled.”

Does anyone care?

Scary times, my friends with Type 1 diabetes.

UNFAVORABLE

Sue B_Head SquareUNFAVORABLE….a word that I really didn’t expect to see. Eight long months of waiting for a decision and when it finally came, it was UNFAVORABLE.

In June of 2012, my husband Marc, a Type 1 diabetic with hypo and hyperglycemic unawareness, entered the Medicare system. A few months later, his Continuous Glucose Monitor (CGM) malfunctioned and needed replacement. His private insurance had always paid for the CGM and sensors without any question, and it never occurred to us that Medicare wouldn’t pay as well. We were wrong. Soon after his endocrinologist sent in the prescription for a new CGM, we were notified that our supplemental insurance, Highmark Freedom Blue, had denied coverage because under Medicare guidelines, CGM is “precautionary” and not covered. Thus began the long road through the Appeals process.

I have been writing of this journey for the past eight months on this blog site. We went through Levels 1 and 2 rather quickly, but Level 3 with an Administrative Law Judge (ALJ) was frustrating to the point of wanting to pull out our hair. There are approximately fifty-six ALJ’s spread throughout the United States and most of the hearings are by telephone. Our telephone hearing was on June 26, 2013. Prior to that date, we sent the ALJ documentation that included a graph of Marc’s blood sugar over a period of a month and various research articles from experts in CGMS. Also included were our statements explaining how our lives had been before the CGM and how they had improved once Marc had a CGM. And then of course, we described how our lives had reverted back to what it was in the pre-CGM days. We also sent a letter from Marc’s endocrinologist explaining how the CGM works and the importance of Marc having one. More details of this story are outlined in my blogpost “A Crusader for Medicare Coverage of CGM”.

We had our telephone hearing in Marc’s endocrinologist’s office. Marc, his endocrinologist, and I all testified. I wrote about this in my “Dear Judge Smith” post and described the frustration we experienced in the months waiting for the Decision to be made. When I wrote that blogpost, we had already been waiting four months. During the next four months, I periodically called the Judge’s Legal Assistant and practically begged for help. Each time I was told that he was not able to divulge any information, that it was on a first come, first serve basis, and that our decision was in “queue” waiting to be drafted.

On Tuesday, February 25th, after eight very long months of waiting, the decision finally came. I was expecting a FULLY FAVORABLE DECISION. I had seen at least five FULLY FAVORABLE DECISIONS from other people whom I had been in contact with over the past months. Their cases were so similar to my husbands that I thought there could be no other decision. Much to my surprise, when I opened the envelope and pulled out my husband’s decision, it was an UNFAVORABLE one. The Judge stated:

While very sympathetic to the appellant’s medical conditions, the ALJ finds that in accordance with guidelines presented in L11520 and Medicare Advantage Medical Policy Bulletin Number E-15, the plan is not required to preauthorize or cover a continuous glucose blood monitor and accessories, because the device is not covered under Medicare’s rules and regulations or otherwise under the EOC.”

The Judge acknowledged that the “appellant has brittle diabetes, and hypoglycemia and hyperglycemia unawareness. His diabetes is difficult to control and his blood glucose fluctuates widely. He has used a continuous glucose monitor for several years prior to enrolling in Medicare. The appellant’s glucose monitor was covered under his private insurance policy with Highmark Blue Shield prior to enrolling in Medicare”.

I understand his statement. However, I have a copy of a different Judge’s decision in a similar case and his ruling was:

“Policy Article A33614 calls continuous blood glucose monitoring “precautionary. The logic of this Policy Article is flawed in this respect and I decline to follow it”. He then goes on to say that “After all, isn’t all blood glucose testing precautionary whether using a continuous blood glucose monitoring system or glucose meter and test strips—as both methods can only tell you that your blood sugar is too high or too low or normal.” He continues “Still further, while the device could arguably be classified as “precautionary” (at least in those instances where the reading is not hypoglycemic or hyperglycemic) they are no more precautionary than standard blood glucose monitors and test strips that are covered my Medicare”.

Furthermore, this gentleman’s hearing was on October 29, 2013 and the Judge rendered his decision on November 6, 2013, just a week after the hearing…not eight months after the hearing.

Two Judges hearing very similar cases and two different opinions. I guess we got the wrong Judge.

Unfavorable_3We are going to soldier on and are now preparing for Level 4.  We will draft an argument explaining why we disagree with the Judge’s decision and present it to the Medicare Appeals Council (MAC). I don’t know what to expect from this. In my perfect world, they would overturn the Judge’s decision. But I am not so sure there will be a perfect world for this. Still I have hope—-or at least try to have hope.

I hope that you have read my blogpost “Join the Crusade”. If you haven’t already done so, please follow the links in the blog and write your Congressperson to let them know how important a CGM is to the health and safety of any diabetic with hypoglycemia unawareness. We need to show our support for H.R. 3710, the Medicare CGM Coverage Act that was introduced into Congress by Congresswoman Carol-Shea Porter. Also, you can go to https://www.popvox.com/bills/us/113/hr3710 to quickly vote to support this bill. It only takes a few minutes and if you fill in the general information, your Congressperson will be notified of your support.

As I have said repeatedly, this issue is not only important to those on Medicare now, but also to the vast number of people who will be entering Medicare in the future. Believe me, you don’t want to have to go through the frustrations that we have experienced fighting for Medicare coverage of the CGM. It’s 100% exhausting, time consuming and frustrating.

UNFAVORABLE….a word that I really didn’t expect to see.

Dear Representative Collins

Sue May 2013_Head SquareOn January 16th at 6:01am I sent the following private message on my Congressman’s Facebook page:

Rep. Collins, I am a type 1 diabetic approaching Medicare age and I use a continuous glucose monitor (CGM) to track my blood sugars and keep myself safe from falling blood sugars. My health insurance pays for this device, but under Medicare law it is not covered. I ask you to support H.R.3710, the Medicare CGM Coverage Act of 2014. This bill would allow Medicare to cover Continuous Glucose Monitoring Systems (CGMs) if recommended by a doctor. Thank you for your anticipated support of this bill.

I never got a response. Maybe that wasn’t the correct way to go about contacting him; I’m not sure. Perhaps I should have sent a letter in the mail or contacted him through his website.

In the meantime on February 17, Sue from Pennsylvania published her Join the Crusade post which encouraged people with diabetes or affected by diabetes to become involved in the fight for Medicare coverage of CGMS.  Her post gave instructions on how to email the Legislative Assistant for Health Issues of one’s Congressperson and ask for his/her help in conveying to the Representative the importance of supporting H.R. 3710: Medicare CGM Coverage Act.  A sample letter was provided.

Sue, with help from Laddie and me, followed her blogpost with an intensive push to contact other bloggers and ask them to share her story and the importance of H.R. 3710.  She received responses from several bloggers who either wrote blogposts about the issue or invited Sue to guest post on their site.  A big thank you to Kerri, Kim, Stephen, Diabetic Mainer, and all others who did this!  And many thanks to everyone who spread the message through Facebook, Twitter, and other social media.

Last week I sent my email to Rep. Collins’ Legislative Assistant for Health Issues using the form letter included in Sue’s blog and added the following paragraph to emphasize why this is so important to me:

I have been a type 1 diabetic since 1988, dependent on taking insulin in multiple doses every single day to stay alive. Although insulin is a natural hormone, type 1 diabetics no longer make insulin due to an immune system that goes haywire and attacks the insulin producing cells in the pancreas. Many things can go wrong when taking insulin, resulting in low blood sugars (hypoglycemia) and high blood sugars (hyperglycemia). These can happen very rapidly and without warning, resulting in confusion, coma and even death. The continuous glucose monitor (CGM) is a device the diabetic can wear to alert him or her to an impending low blood sugar in time to act before unconsciousness results. I have been wearing a CGM for 4 years, and have not had a low blood sugar that resulted in unconsciousness in that time. Before I got the CGM, I would have at least one episode every month, many resulting in 911 calls and/or emergency room trips. I will be 65 next year and on Medicare, and unless this law is changed I fear I will once again be experiencing low blood sugars and trips to the E.R. or worse.

Capitol Building_Collins3I am hopeful that I will get a response from either Rep. Collins or his assistant. And if I don’t get a response, I hope that he is so busy working on co-sponsoring the bill that he doesn’t have time to reply to me. I will happily accept that outcome.

Join the Crusade

Sue B_Head SquareMedicare guidelines do not provide for coverage of Continuous Glucose MonitorsI am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future.

In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade.

I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

  • The most effective step you can take is to ask your own Representative to cosponsor the bill.
  • Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
  • Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (below) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on.

The roster of the House of Representatives along with phone numbers is available at http://www.house.gov/representatives/

CGM CrusaderIf you would like to know more about my story and why I am crusading for CGM coverage by Medicare, please read my About Page and some of my previous blog posts.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later.

The only way to fight Medicare’s denial of the CGM is to get the guideline changed. The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014.

At the bottom of this post you will find clickable links to download a Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a blogger and want to know how to help, click to download this document:  Dear Fellow Bloggers_Final

Please contact me if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic.

Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket. Together we can do this.

Thank you.

Please note that due to problems with spam, comments are blocked on Test Guess and Go posts older than 90 days.  If you would like to make a comment or contact Sue from Pennsylvania, click here.

 

To download, click on this link: Sample Letter to Congress_Final

Sample Letter

To download, click on this link: Dear Colleague_Final

Dear Colleague Email Blast

Baby Steps

Sue B_Head SquareFor months I have been blogging about the roadblocks my husband has faced in getting a CGMS. He used one before going on Medicare, but a replacement system prescribed by his endocrinologist was denied by Medicare. We went through Levels 1, 2, and 3 of the Appeals process and had a hearing with an Administrative Law Judge on June 26, 2013. After being promised a decision in three months, we are  at seven months and still waiting for the judgement to be drafted so that we can find out if we got a “Fully Favorable Decision” or not.

In the meantime, I have been in contact with a Legislative Assistant of Representative Carol Shea-Porter [D-NH1].  In December 2013 Shea-Porter introduced a bill into Congress (H.R. 3710) which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. Unfortunately this bill is being given little chance of passing, but I believe it is an important step in bringing attention to the important issue of CGMS coverage for senior citizens.

I have also been in touch with the Global Marketing Director of Dexcom and she has indicated that together with Medtronic, they are forming a coalition to plan a big legislative push with respect to CGMS and Medicare.

I have been cautioned that it is too early to become excited about a speedy change in Medicare policy. But for me this is exciting news. I have gone from feeling totally alone in my crusade to knowing that a Congresswoman, Dexcom, and Medtronic are taking steps to influence Medicare to change the guideline.  For the many diabetics on Medicare who need a CGMS and can’t afford the cost of the device and sensors (my husband being one of them), there is a glimmer of hope that victory will be achieved now that some of the big-time players are becoming involved in the fight.

Climb the MountainThe steps being taken now are just baby steps and it is still a long way to the top of the mountain. There will come a time when I, together with many others, will need to have our voices heard. We will need a groundswell of support from the Diabetes Online Community to help change Medicare policy to provide for CGMS when medically necessary for senior citizens with diabetes.

Right now we are in the early stages of figuring out how to do this in the most effective way. I urge you to keep reading Test Guess and Go as we update our progress.  Please contact me if you have any information or contacts who will be helpful in pursuing this goal. If you are on Medicare (or will soon be on Medicare) and are concerned about your safety in living with diabetes without a CGMS, please reach out to me to add your name to my growing list of advocates.

Baby steps.  So small, but the first steps on the road to victory.

Part 1: The Times They Are A-Changin’

Laddie_Head SquareWhen Bob Dylan wrote this song, I think that he was writing about civil rights, history, and the idea that change is coming whether you want it or not.  Sounds a lot like the Affordable Care Act.  Some of the provisions in this bill have already been enacted and we’ve seen increased coverage for preventative care and the ability for young adults to stay covered under their parents’ insurance until age 26.  But there are still big changes to come in 2014.

I have always had good insurance and know that I am very lucky.  In general I have been isolated from changes affecting “other” people.  My current insurance is through the high-risk pool in Minnesota.  It is expensive but the coverage is very good.

I am 61 years old and a synonym for my insurance in the coming years is going to be “change.”  Starting in 2014, I will purchase insurance through the MNsure Marketplace which is the health exchange set up in Minnesota as a result of the Affordable Care Act.  Right now I see nothing that indicates that I will get either cost savings or better coverage.  Using the calculator on the MNsure website, it looks as though my premiums will go up about $150 per month.  However that is not an apples and oranges comparison. I currently have a high deductible plan along with a Health Savings Account and the calculated amount from MNsure is for a “silver” plan with little information on the details.  So it is a waste of energy to spend much time thinking about this until the exact details are available in October.

I think that the hardest part about selecting a plan in the fall will be knowing exactly what my coverage will be.  Things like office visits and doctor fees will be easy to decipher.  As someone with Type 1 diabetes in Minnesota, it is unlikely that I will have to worry about coverage for my insulin pump.

But coverage for my Dexcom Continuous Glucose Monitor (CGM) will be problematic at best.  I have used a CGM for 5 years, so how do I prove that I need it?  I haven’t had a severe low requiring paramedics in ages.  I haven’t been having severe overnight lows.  I can hardly remember the last time I even needed my husband to get me some juice.  And why is that?

Because I use a CGM.

I suppose I can keep track of how many times the Dex alerts me to lows.  I can count the times it wakes me up at night to tell me my BG is 70 or dropping fast.  Although I always want to ignore these alerts and go back to sleep, I am very good at eating some glucose tabs from my bedside table and programming a temporary basal of zero on my pump for an hour.  I never correct a high without testing and most of the time confirm a low with a test before eating glucose tabs.  But I never do nothing.  Like many Type 1’s who use a CGM, I rarely have a night that it is not alerting me to something.  It’s a nagging parent and I don’t ignore it.

Another question will be test strip coverage.  My insurance has always provided me with the number of strips prescribed by my endocrinologist.  How will I be able to tell if my new insurance will do so?  And then we get to the issue of what brands of strips will be provided.  Will I know what the drug and supply formulary is before I select an insurance plan?

Speaking of the drug formulary, will I know what brands of insulin are covered?  Will my current insulin type be covered at a higher tier or maybe not covered at all?  Frequently I read blogs and message board posts by people being forced to change insulin types because of a formulary change by their insurance company.  To many decision makers at insurance companies, all fast-acting insulins are the same.  Those of us who use them know that the different chemical compositions and additives can make a big difference in our control and potential allergic reactions.

This fall I will be making a big decision about insurance.  I have started a list of questions to address as I compare plans.  I hope that I will have enough information to answer those questions.  Even if I don’t, I will have to make a choice and keep my fingers crossed that it is a good decision.

Change is coming and there is no exit off this freeway.

Highway of Change

A Crusader for Medicare Coverage of CGM

Please welcome Sue from Pennsylvania who will be a regular contributor to my blog. Sue is the wife of a Type 1 diabetic and a crusader for the coverage of Continuous Glucose Monitoring Systems by Medicare.  I will be Medicare age in four years and Sue is fighting the battle to help her husband and everyone like me who follows in his footsteps.

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Sue B_Head SquareThis is my very first blog post, so here goes.  I am the wife of a diabetic.  My husband has had Type 1 diabetes for over 15 years.  He’s been on an insulin pump for most of that time.  About five years ago, he got his first Continuous Glucose Monitor (CGM) and it made a tremendous difference in his life.  He has brittle diabetes, hypoglycemia and hyperglycemia unawareness and before he got his CGM , would have episodes of very low blood sugar and in many instances, pass out because of this.  With his CGM, this no longer happened.

In June of 2012, he reached 65 and had to enroll in Medicare.  Since then, our life has been somewhat of a nightmare.  His CGM, at that time, was over 2 years old and starting to act up.  It no longer gave accurate readings and at times when he would go low or very high, it would no longer sound an alarm advising him to take immediate action.  When his endocrinologist wrote a prescription for a new CGM, his insurance company denied payment because unlike our private insurance, Medicare does not consider it a necessary device and in their words it is just a “precautionary” device. We have appealed the decision and had a hearing with an Administrative Law Judge on June 26, 2013 and are now waiting for the Judge’s decision.

For five years, my husband was able to lead a normal life without the constant worry of going into a state of confusion or comatose, especially when driving.  Now all that has changed and it’s put indescribable pressure on both of us emotionally and on him physically as well.  Having these peaks and valleys in blood sugars makes him tired and out of sorts most days.  Since he is gainfully employed and does quite a bit of driving in his job, it’s a constant source of worry that something awful will happen when he’s out on the road.

CGM CrusaderIt’s so hard to wrap our brains around the fact that something that is so lifesaving to my husband (and myself) is being denied by Medicare.  This is especially troubling in the face of the fact that our endocrinologist has gone to bat for us so many times during our quest to get a new CGM because she considers it of the utmost necessity for my husband.

Our hope is that our ALJ rules in our favor and that our insurance company upholds the Judge’s ruling.   After this happens, my mission in life is to have Medicare change their guideline for Continuous Glucose Monitors.