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

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

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

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

*****

The Journey that is Medicare

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

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

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

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

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

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

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

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

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

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

Congrats to Medtronic!

Laddie_Head SquareUnless you are living in an underground bunker, you know that Medtronic Diabetes announced yesterday that the MiniMed 670G hybrid closed loop system has been approved by the FDA with anticipated shipping in the spring of 2017. Here’s a link to the press release if you haven’t read it yet.

Am I excited about this? Absolutely yes!!! Will I purchase it? Absolutely not!!!

You may think that I won’t purchase this because I am currently a Dexcom and Animas user. You may think that I won’t purchase this because I’m mad about the United Healthcare/Medtronic agreement. You may think that I won’t purchase this because “The Cure” will be here in five years. No, those are not the reasons. What is preventing me from pursuing this device is my next pump and CGM is ⚡️⚡️⚡️⚡️

Those lightening bolts are supposed to grab your attention and make you sit on the edge of your seat as I explain my predicament.

My issue is that I am going on Medicare in April 2017 after having my current pump go out of warranty in December 2016. I long ago satisfied my deductible for 2016 and if I purchase a pump before the end of the year, it will be at no cost. The individual health insurance market in Minnesota is in chaos and I plan to purchase the cheapest insurance plan possible for January through March 2017. It will be expensive despite a high deductible. No way can I purchase a new pump in that time frame.

So my choice is to purchase a pump in early December or enter 2017 with an out-of-110089warranty pump and wait until Medicare. A naive advisor might suggest that I buy the Medtronic 630G in December knowing that those buyers will be the first in line for the 670G pump when it is released in the spring. But guess what! Once you get on Medicare, it is against Medicare law for beneficiaries to participate in upgrade programs. So if I purchase a 630G, that will be my pump for the next 4-5 years because I will not be allowed to upgrade to the 670G.

A Medtronic representative told me on Saturday that the 630G is now being reimbursed by Medicare. The sensors are not Medicare-eligible, but at least the pump is covered. If I wait hoping to purchase a 670G after April 1, the most likely possibility is that it will not be covered by Medicare for quite a while. Hopefully I am wrong on that.

I am excited that the FDA has approved the MiniMed 670G. Medtronic is not calling it an  artificial pancreas, but it is an important step on the journey to complete insulin automation. That is good for all of us excited about the future of diabetes technology.

But for me, it is not in the game. My reimbursement scenarios just don’t fit the timing of this release. Anyone who reads my blog regularly knows that I currently use Dexcom after several unhappy years with Medtronic SofSensors. The Guardian Sensor 3 that is part of the 670G is many generations removed from that nightmare and I would be open to trying them. But it would be too big a leap of faith to move back to Medtronic without a trial run. Maybe that will be possible in the future when hopefully, hopefully, hopefully CGM/pump systems will be reimbursable under Medicare.

Today my options are too tangled and uncertain to make the MiniMed 670G part of my plans. But I will still camp out in the grandstands with other diabetes advocates yelling “Congrats!” to Medtronic. We live in a golden age of diabetes tech. Unfortunately we also live in a stone age of diabetes reimbursement for those of us who are approaching age 65 and older.

Countdown to Medicare with Type 1 Diabetes: 7 Months / Ducks in a Row

Laddie_Head SquareI went to court last month. Was I nabbed by the diabetes police? Nope. How about the regular police? Not them either. Was I dragged into the legal system for breaking the rules by dosing insulin off my CGM? Nothing like that. So what was I doing?

I was getting my ducks in a row.

What does that have to do with Social Security and Medicare? The answer to that is a lot.

As you approach your initial sign-up date for retirement benefits under Social Security, you need to be sure that you have the required documentation for your claim. According to the Social Security Administration (SSA) website, in most circumstances you will need the following documents:

•your Social Security card (or a record of your number);

•your original birth certificate or other proof of birth (You may also submit a copy of your birth certificate certified by the issuing agency);

•proof of U.S. citizenship or lawful alien status if you were not born in the U.S. [More Info];

•a copy of your U.S. military service paper(s) (e.g., DD-214 – Certificate of Release or Discharge from Active Duty) if you had military service before 1968; and

•a copy of your W-2 form(s) and/or self-employment tax return for last year.

My advice is to consider this list at least 3 months before signing up for Social Security so Countdown to Medicare 7 Monthsthat you will have time to obtain any missing documents. Although I had a copy of my birth certificate, I chose to get a certified copy just to be safe. It took about 3 weeks to get the official document from the vital records department of my birth state.

Fortunately if you have any gaps in documentation, you can and should sign up for Social Security on time. From the Social Security Administration (SSA) website:

“Even if you don’t have all the documents you need, don’t delay signing up for Social Security. You can submit any documents you do have. You can provide the missing documents later or we may be able to help you get them.

In many cases, your local Social Security office can contact your state Bureau of Vital Statistics and verify your information online at no cost to you. If we can’t verify your information online, we can still help you get the information you need.

If you delay signing up, you could lose some benefits you may be due.”

So why did I have to go to court?

I had to get a court order for an official name change. Since 1976 I have had a discrepancy between the middle name on my driver’s license and the middle name on my Social Security card. When I got married I chose to keep my maiden name as my middle name and abandoned my previous middle name. Or so I thought. I went to Social Security and had a card issued in my new name. When we moved to Minnesota, the DMV required me to use the old middle name on my driver’s license. I don’t remember how my passport was handled, but it has always matched my driver’s license. So my two main forms of ID for the last forty years have not matched my tax information, bank accounts, and everything else that we own.

I should have fixed this discrepancy years ago, but it amazingly has never been a problem. Thinking of approaching Social Security and handling our assets in our senior years, I finally determined that it was time to resolve the issue.

Changing your name is not difficult. I didn’t need to use an attorney, but did so because a good friend was willing to help me. I filled out a lot of paperwork, seemingly the same thing over and over again. I signed a form allowing for a criminal background check by the FBI. I completed another form for a background check by the MN BCA (Bureau of Criminal Apprehension). More than once I signed that I was not changing my name for fraudulent reasons or to hide assets. On my scheduled court date, I went before a judge with two witnesses and received an official court order for a name change.

With the certified copy of my court order, I have applied for a new driver’s license and will apply for a new passport once the DL arrives.

It is possible that my name discrepancy might not have been noticed with my Social Security application. However in our increasingly ID-conscious society, it seemed to be an unnecessary risk to be a citizen with two aliases. Two aliases sounds so criminal compared to two middle names….

I don’t know everything about Social Security and Medicare yet, but at least I have my ducks in a row. Most of you won’t have to go to court to get ready for Medicare. However, you may have other things that should be taken care of as you enter this new stage of your life.

Now is as good a time as any to get your ducks in a row.

Ducks in a Row

The Last D-Tech

Laddie_Head SquareThe last CGM.

The last pump.

The last D-tech before going on Medicare.

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

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

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

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

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

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

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

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

And fear.

*******

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

Countdown to Medicare with Type 1 Diabetes: 8 Months / Drugs and Donuts

Laddie_Head SquareWhen you start investigating Medicare plans, it is easy to get overwhelmed with letters and options. Parts A, B, C, and D are well-known, but depending on where you live, you may find Parts F, G, K, L, M, and N.

In this blogpost I plan to be simple and just talk about Part D Medicare prescription drug coverage. That’s a joke because there is nothing simple about Part D.

Let’s start with a few straightforward facts:

  • Part D is regulated by Medicare but all drug plans are administered by private companies.
  • Part D plans provide coverage for generic and name-brand drugs. All plans must Countdown to Medicare 8 Monthsprovide at least a Medicare-approved level of coverage, but can vary by specific drugs covered, rates, and pharmacy networks.
  • In order to purchase a Part D plan, you must be eligible for Medicare Part A and/or enrolled in Part B. You must also live in the plan’s service area.
  • You may purchase Part D as part of a Cost/Advantage plan or as a stand-alone Part D plan.
  • Part D coverage is not required. However, if you do not purchase it when you are first eligible, you may be subject to penalties and higher premiums when you do. Those penalties will continue for as long as you participate in Part D. Like for the rest of your life.

The most complicated part of standard Medicare drug coverage is understanding the four cost stages, particularly the coverage gap or donut hole.

The first stage is the Deductible Stage where you pay 100% of your prescription drug costs. The maximum deductible allowed by Medicare in 2016 is $360. Some plans have lower deductibles.

Once you satisfy your deductible (doesn’t take long if you have diabetes!), you enter the Initial Coverage Stage. In this “cost sharing” phase you pay either a copay or a percentage copayment depending on your drug plan. In 2016 this stage continues until the payments by you and your plan combined total $3310. For example, you buy 4 vials of Lantus with a total contracted price of $1000. You have a coinsurance plan where you pay 25% or $250 and the plan pays 75% or $750. The entire $1000, not just your out-of-pocket cost, counts towards the $3310 amount to put you into the Coverage Gap or Donut Hole.

If you use insulin, you can see how quickly you will enter the donut hole where the out-of-pocket drug costs increase significantly. In 2016 under a standard Medicare Part D plan, you can expect to pay 45% of the cost of covered name-brand drugs and 58% of the cost of generics once you reach the coverage gap. I could write a book trying to explain the donut hole, but here are a few things to put it in context.

The donut hole terminology came from the Medicare Modernization Act of 2003 (MMA) in which prescription drug coverage became available to all Medicare beneficiaries. If you are interested in the history of this law, check out this publication by Jonathan Blum who was a professional staff member to the Senate Finance Committee at that time.

As recently as 2010, most Medicare beneficiaries paid 100% of drug costs once they reached the coverage gap. One of the few changes made to Medicare by the Affordable Care Act was the implementation of a blueprint to gradually eliminate the donut hole by 2020. A good explanation of these changes can be found in this Medicare publication “Closing the Coverage Gap—Medicare Prescriptions are Becoming More Affordable.”

Part D Rectangle

One unanswered question I have about the coverage gap is how the $4850 to enter the catastrophic stage is computed. I have attended two Medicare information meetings and both insurance companies indicated that the $4850 is totally paid by me. However, the Medicare publication mentioned above states: “Although, you’ll only pay a certain percentage of the price for the brand-name drug, the entire price (including the discount the drug company pays) will count toward the amount you need to qualify for catastrophic coverage.” If you know the answer, please leave a comment. Once I get to Medicare, I suspect I’ll figure it out.

The last stage of Part D prescription drug coverage is the Catastrophic Coverage Stage. In 2016 you pay either $2.95 for generics and $7.40 for brand-name drugs or 5% of drug costs, whichever is greater.

Just when things look complicated enough, there is another consideration for those of us who use insulin pumps. Although insulin is usually purchased through a Part D plan, it is covered under Part B for pump users. Fine and dandy, but it can be extremely difficult to find a supplier for Part B insulin. To get a clue how difficult, read Sue from Pennsylvania’s post “Hey, He Needs his Insulin!” One reason is that many pharmacies rarely deal with this and plead ignorance. Another reason is that the reimbursement rate for Part B insulin is so low that pharmacies/suppliers lose money when selling Part B insulin. A 2013 Lincoln Journal Star article states:

A Medicare spokeswoman said the price is set in federal law — at 95 percent of the average, wholesale price in effect on Oct. 1, 2003. So it requires Congress to change it, she said in an email to the newspaper.“

The cost savings for buying insulin under Part B are substantial. Medicare pays 80% of the cost and a supplemental/advantage/cost plan should pay the remaining 20%. Insulin is therefore usually provided at no cost to someone using a pump. In addition, insulin under Part B is excluded from Part D donut hole calculations.

That’s it for today. I hope that this blogpost has provided some information without totally putting you to sleep. I have done my best to research Medicare drug coverage and if any of what I have written is incorrect, please send me a message along with a dozen donuts.

Most of us think that when we grow old, we will play golf, watch TV, do crossword puzzles, and relax on the patio. I am beginning to think that I’ll be sitting at my desk trying to figure out Medicare….

*************

Most of the information in this blogpost comes from current publications of Blue Cross Blue Shield of Minnesota and HealthPartners. I attended community meetings offered by those companies in July. The official Medicare website is also an excellent resource.

We Regret to Inform You

Laddie_Head SquareMy health insurance life is imploding and exploding. I can’t tell the difference between what I know and what I don’t know. What I heard last week isn’t true this week and might change again next week. In January I wrote about dreading Medicare. Today I think it might be the best thing that could happen to me.

On June 23 Blue Cross Blue Shield of Minnesota (BCBS) announced that it will discontinue full-service plans in the individual health insurance market beginning in 2017. This follows the exit or reduction in offerings by other companies in previous years. Minnesota was one of the states that created its own insurance exchange in 2014 after the implementation of the Affordable Care Act (ACA) and the results have been devastating for many of the 6% of citizens seeking individual insurance in the state. (The individual market covers people who do not have access to employer-based coverage and are not eligible for Medicaid or other publicBCBS Blexit programs.)

BCBS of MN is the only company so far to announce its exit from the 2017 individual market. Unfortunately it is the largest insurer in the market and its departure will affect 103,000 of the approximately 300,000 Minnesotans who purchase individual insurance. The recent announcement by BCBS follows a premium hike of over 50% in 2016. This increase was justified by the carrier’s reported loss of $265 million dollars in the 2015 individual market.

My 2016 monthly premium was 61% higher than in 2015 and was accompanied by a slightly higher deductible. If BCBS is continuing to experience unsustainable losses with the huge premiums that I am paying, my fear is that no company will be able to survive longterm in this market. Unfortunately as rates soar, many young and/or healthy individuals are choosing or being forced to go without insurance. The downward spiral of an unsustainable market is intensified as the insured population gets older and sicker and costs skyrocket.

I have no idea what the landscape for the individual insurance market in Minnesota will look like next year. It seems questionable that the remaining players can absorb the 103,000 people stranded by BCBS. Will other insurers pull out? Will exorbitant premiums, high deductibles, limited networks, and poor coverage be the norm? What will be the effects of the presidential election with one candidate vowing to repeal the ACA?

All I know is that I received a letter that says:

“We regret to inform you that at the end of this year, Blue Cross and Blue Shield of Minnesota will be discontinuing all individual and family insurance plans sold to members in Minnesota directly, through an agent or broker, or on MNsure. As a result, you will not be able to renew your current plan or select another Blue Cross plan for coverage in 2017.”

I personally only have to deal with this for three months in 2017 and will transition to Medicare on April 1. I know others who do not have this option. Some of them have Type 1 diabetes and the outlook is bleak.

Yes, Medicare is definitely starting to look pretty good.

*****   Relevant Articles   *****

http://www.startribune.com/blue-cross-eyes-major-exit-from-individual-market/384303131/

http://www.startribune.com/regulators-approve-premium-jumps-averaging-as-much-as-49-percent-in-minnesota/330275391/

Countdown to Medicare with Type 1 Diabetes: 10 Months / Sources of Information

Laddie_Head SquareAlthough 10 months before my 65th birthday seems early to investigate my Medicare options, it’s really not.

First, I can sign up for Medicare three months before my 65th birthday and January is seven months away.

Secondly, I will be doing most of my research this fall in a period that overlaps with the October 15 – December 7 open enrollment period for all Medicare beneficiaries. That is good because there will be a lot of 2017 plan information available at that time. That is bad because most insurance brokers and company representatives will be busy and it might be hard to get individual attention.

Thirdly, as someone with a pre-existing health condition, my initial selections can have lifelong effects. If I do not choose a Medigap (Supplemental) policy during my one-time Medigap Open Enrollment Period (the first six months after I turn 65), I can be refusedCountdown to Medicare 10 Months Medigap coverage or charged higher rates in the future. Although an Advantage plan may seem more favorable in the short run, I need to analyze that decision on a longterm basis knowing the problems of switching to a Medigap policy in the future. Minnesota has the highest concentration of seniors with Medicare Cost plans. These plans are a hybrid between Advantage and Supplemental policies and may end up being a good choice for me.

My sources of information at the moment are:

Federal government:  Websites such as Medicare.gov and Cms.gov are the most reliable source for current Medicare information and regulations.

SHIPs:  State Health Insurance Assistance Programs (SHIPs) provide free one-on-one insurance assistance to Medicare beneficiaries and links to resources for senior citizens in each state. They are state-specific grant-funded projects of the U.S. Department of Health and Human Services. Select your state on this site to obtain the relevant phone number and website. In Minnesota I am linked to the Minnesota Board on Aging along with the Senior LinkAge Line® and MinnesotaHelp.info®.

Insurance Companies:  Commercial insurance websites currently provide information about 2016 plans. The 2017 plans will be released in October. Help numbers and retail store appointments are some of the options offered. Most companies also sponsor group sessions which provide information on Original Medicare, plan choices, and differences among the plans. Last year I attended an insurance company-sponsored meeting titled “Medicare 101.” This year I will attend one or more sessions provided by the companies whose plans I am considering.

Miscellaneous Websites I can Google specific topics and receive multiple website recommendations. It’s a good idea to evaluate the reliability of the data and the source of the info (government vs commercial vs good information vs snake oil).

Books and Publications:  Most of the websites mentioned above have free pamphlets and downloadable books. I have already downloaded the 160-page “official U.S. government Medicare handbook” titled Medicare & You 2016 from the Medicare.gov publications link. You can also purchase commercial books such as Medicare for Dummies.

Insurance Brokers Insurance brokers who specialize in Medicare are a good source for individual help. They earn commissions from the insurance companies and are free for users. In recent years I have worked with an excellent broker for private insurance and recently touched base with the Medicare specialist in the same firm.

Friends with diabetes:  I have already gained useful information from some of my Type 1 friends already on Medicare. For learning the ropes of navigating Medicare with an insulin pump and a CGM, they are a practical and valuable resource.

In some ways learning about Medicare is not that different from learning about diabetes. A lot of it seems confusing and overwhelming at first. As you learn more, you begin to understand how things fits together and become more confident about your decision-making skills. At the moment I would argue that my diabetes expertise greatly outweighs my Medicare knowledge, but I think I’m on the right road.

If you have other sources of information about Medicare, please share them in the comments. Advice is always welcomed!

 

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.

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

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

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….