Sunday, August 08, 2021

Srs with T1D; Medicare + Lack of Good Enrollment Info from Diabetes Nonprofits

Not long ago, my friend Riva Greenberg wrote a compelling diabetes blog post which actually ran on Diabetes Mine https://www.healthline.com/diabetesmine/nearly-50-years-with-type-1-diabetes-a-long-haulers-report although she also posted news of it on her own personal blog https://diabetesstories.com/2021/06/16/the-untold-story-49-years-of-type-1-diabetes/.

Riva, like me, is today considered a T1D "Long Hauler". She is now in her 49th year of living with Type 1 diabetes, meaning she'll soon be eligible for a Joslin 50 year medal if she chooses to claim it. I think Riva and my older sister share a common diagnosis year (I believe they both were diagnosed in 1971 if I am not mistaken). At that time, diabetes clinicians pretty much made stuff up because they truly did not know the answers with absolute certainty. None of the groundbreaking studies such as the DCCT had even been thought of at that time, much less completed and analyzed. Doctors (even if they had suspicions) simply did not know many answers in those days. 

The concept of formalized diabetes educators with specific training did not even emerge until more than 15 years later. Also, there was only a hazy understanding that Type 1 diabetes had a different disease etiology from Type 2 diabetes, although the consensus seemed to be that normal weight or thin children with diabetes were immediately put on insulin because pills used for Type 2 diabetes usually did nothing for the patients and many went into DKA without insulin, so that became the standard of care for children with diabetes at the time. 

Since Riva was no longer a child at her diagnosis, I've never asked if her doctors tried to give her some of the early pills used for treatment of Type 2 diabetes but I suspect not because she did not fit the presumed profile of an elderly individual who was overweight. It was common to presume that older patients usually had Type 2 diabetes because they weren't children at the time of their diagnosis, although patients who were not overweight might have been suspected to have the autoimmune variety of the disease. It would be several years after her diagnosis that they had definitive scientific proof that T1D and T2D were indeed different ailments with dissimilar etilogies and pathologies.

Anyway, Riva's post kind of resonated with me. I'm at a peculiar age. 

I was born in 1969 (a year made famous for the Summer of Love, the Woodstock Music Festival and the Stonewall riots to name a few history-making events from 1969). Yet I have absolutely zero recollection of any of those events. The reason: I was an infant in diapers when those things happened. I am assuredly NOT a Baby Boomer by any stretch of the imagination. 

In fact, my parents are Boomers, but I  assuredly am not. I share some similarities with Boomers with T1D. I was diagnosed at age 7 and was immediately put on insulin (originally Lilly Iletin, but was switched from Iletin R (regular) and Iletin N (NPH/isophane) to a combination of Iletin L (Lente) and Iletin S (semilente). That seemed to work reasonably well for me for a number of years. We didn't even have glucose meters when I was diagnosed. In the hospital, I was given a test tube and a bottle of Clinitest tablets. It required patients to add 5 drops of urine and 10 drops of water and then to add a Clinitest tablet which then boiled until it changed colors. That was as close as we had to a glucose reading.

My older sister figured out if more drops of water was added to the test tube, the readings appeared lower. She also taught me as a 7 year old that I could simply add a drop or two more water and be rewarded with a cookie. Not exactly the kind of things kids with diabetes should be taught, but its what's done when there is no such thing as formalized diabetes education which was the case back then.

In fact, I received my very first glucose meter at age age 13 in 1982. Previously, we used the strips which my mother smartly used an X-Acto knife on and doubled the number of tests which could be done from a single, overpriced vial of test strips. That was possible because they were color-coded and you really didn't need an entire reagent strip to get a blood glucose reading in those days. But they eventually spent like $250 and bought us our first glucose meter. In my experience, that was perhaps the most profound advancement in diabetes care which was ever introduced. For my first 13 years, we were literally "winging it". If you're a math expert, that also means I'll be eligible for a Joslin 50 Year Medal in just 6 years should I choose to claim it.

Technically, I'm [as of 2021] what can be referred to as "middle-aged". Most of my perspective on being middle-aged was formed by not-so-great TV depictions of men about the age I am now going through what was called a mid-life crisis, whereby they saw their youth slipping and reacted by buying expensive sports cars and having (or trying to have) affairs with dumb women half their ages who likely viewed them as "sugar daddies" but then dumped them after their one night stands when the shallow bimbos realized their old man wasn't going to put up them in a rent-free apartment and buy them expensive gifts. But I never experienced a mid-life crisis. And, as I already blogged about, I feel pretty good about my own retirement planning so far.

As author Jonathan Rauch documented in his 2018 book "The Happiness Curve: Why Life Gets Better After 50" (borrow it at your public library) explaining that there are empirical biological processes and changes which occur in the body during mid-life which are nature's way of preparing us for life when we become senior citizens. The big upside is that while generations past might have seen their lives end at about my age, today people often live to be much, much older. Rauch credibly argues that the middle-age period of transition gives way for genuine psychological happiness and contentment later in human lives. The science appears to back Rauch's assertions up.

Anyway, I'm part of a group that came to be called/classified as Generation X (or "Gen X"). Pew Research referred to us this way

"Generation X: America's neglected 'middle child'"

Pew closed by putting it this way:

"For [Gen] Xers, there's one silver lining in all this. From everything we know about them, they're savvy, skeptical and self-reliant; they're not into preening or pampering, and they just might not give much of a hoot what others think of them. Or whether others think of them at all."

Demography aside, I'm also at an age where I now have a growing number of friends who have already crossed the threshold into their post-employment years of retirement. I can use their experiences to hopefully smooth my own transition when that happens.

In fact, I am learning from the experiences some of my peers in the diabetes community have experienced when it comes to Medicare. For example, Laddie Lindahl https://testguessandgo.com/ is among the first of my peers who started on Medicare. 

Others, such as Riva Greenberg https://diabetesstories.com/ are now learning the ropes on that and they may be able to reflect on her own experience with that down the road. If I'm being brutally honest, I'm rather underwhelmed with the resources from the American Diabetes Association, Beyond Type 1 Foundation, the Juvenile Diabetes Research Foundation and others when it comes to guidance on transitioning into Medicare. Those orgs remained primarily focused on children with diabetes and it shows. Their resources on the subject are superficial, don't really answer many basic questions and appear to be written by individuals who are like 30 years old and relied on Google to write articles on the topic.

Based on current eligibility requirements for Medicare, I still have 13 more years before I'll go down that path, but if I were seeking info on things to beware of when enrolling in Medicare, I likely would not be turning to ADA, JDRF or Beyond Type 1 for guidance. Whatever materials they have on the topic seemed pretty superficial and useless to me. 

However, I have seen some of what I thought were pretty decent resources, including suggestions from NextAvenue https://www.nextavenue.org/medicare-application/ which suggested that simply making a telephone call to the federal government's Medicare toll-free hotline (800-633-4227; that's also 800-MEDICAR) was a particularly helpful decision the author made in the process.

Many complain that they are drowning in flyers, articles and advice from friends who've already enrolled in Medicare as they approach age 65, and yet they still feel somewhat overwhelmed. However, the NextAvenue author said that the phone reps working for Medicare (not third parties who are paid to sell Medicare Advantage plans who advertise on TV) have experienced virtually every question known to man on the topic of enrolling in Medicare and they seem to have well-scripted answers to thousands of possible questions. Once upon a time, people went to file paperwork at their local Medicare offices, but cost-cutting has closed tens of thousands of those local offices, so the phone option seemed to be pretty useful advice. 

She also recommends, if you really want to get into the weeds, to buy (or borrow from your public library) the 2016 book entitled "Get What's Yours for Medicare: Maximize Your Coverage, Minimize Your Costs." http://www.getwhatsyours.org/medicare/ The book was written by Medicare maven Philip Moeller; Moeller's website, "Get What's Yours" http://www.getwhatsyours.org/ has the current figures for Medicare premiums and deductibles and he also has frequent blog posts with updated info.

As I said, I have a little over a dozen more years before I'll be ready go down that road barring major changes to Medicare eligibility, so I'm not too overwhelmed ... at least not yet.

Still, a few years ago (between 2016-2017), I invested a LOT of time and effort to actually help Dexcom secure Medicare coverage of its G5 CGM system. I did so mostly out of self-interest, anticipating that I wanted to ensure CGM's are covered for friends who would soon need it, and when I became eligible for Medicare down the road. I'm old enough and experienced enough to believe that we'll all still be using old fashioned insulin 16 years from now (no offense to those who believe the ever-elusive T1D cure is right around the corner). 

Its annoying Dexcom never even acknowledged the patient advocates' work on the effort to help the company secure CMS/Medicare coverage, let alone paid anyone for helping to make it happen. No patients were even flown to Dexcom's San Diego HQ to discuss how our push helped tip the proverbial needle and actually made it happen for the company. Dexcom likely could NEVER have done it if more than 10,000 patient signatures/comments had not been submitted on its device relabeling request docket at the FDA at the time. 

Still, it is small consolation that Dexcom's path was immediately copied by other CGM makers including Abbott's Freestyle Libre 2/Libre 14 Day sensor, Senseonics (now Ascensia's) Eversense CGM, and Even Medtronic's Guardian Connect CGM -- all of which did the exact same thing Dexcom did in 2017. But at the time, I was in a position to make a very meaningful contribution, and I think Medicare's 2016 announcement that it would start covering the Dexcom G5 in 2017 was definitive proof that my efforts had bared fruit. 

Below are some of the graphic images I Tweeted about CGM coverage back in 2016-2017. Originally, it was an effort to advance a Congressional bill to force Medicare coverage to cover the devices. but it later pivoted to advance Dexcom's labeling change. The timing was ironic.





















My perspective is: mission accomplished!

While I'm very proud of my previous work to ensure Medicare coverage of continuous glucose monitoring (CGM's) systems for seniors with Type 1 diabetes (catch my post at http://blog.sstrumello.com/2017/01/how-patient-advocacy-helped-persuade.html for more on how that happened), as I said, my mission was accomplished. While two major CGM manufacturers, Dexcom and Abbott, now seem more enamored with trying to capture the massive non insulin-using Type 2 diabetes patient audience (see HERE https://www.medtechdive.com/news/dexcom-ceo-on-the-type-2-population-the-super-bowl-ad-and-pandemic-momentu/602755/ for evidence), my work on helping the company accomplish coverage is over. To be honest, I find the Dexcom's lust for getting peer-reviewed (done by others, not by Dexcom, because company-sponsored research tends to be disregarded as less credible by doctors and policymakers) studies to persuade coverage (either from commercial healthcare insurance or Medicare) of CGM's for non insulin-using Type 2 patients beyond my concerns or desire to help. I did what was needed for the T1D community, and that was accomplished. I have no inherent interest to push for CMS coverage of CGM's for non insulin using Type 2's.

Advice to Dexcom CEO Kevin Sayer: 

You and your company are basically on your own in making your products available to the entire T2D universe, so you shouldn't count on patient advocacy [much of which is T1D, but far less of which is T2D -- yeah, that's a reality which defies perceived logic but T1D's were the first there, so we dominate the space, and you won't find many to persuade or influence there] to help in your efforts. 

Also, watch your back on the T1D market you now presume is yours. 

Reason: Abbott's FreeStyle Libre 3 model will rival the features that now differentiate Dexcom G6 has over rival products. The Libre 2 model already does that with third-party NFC add-on devices and software, but once Abbott offers these benefits, Dexcom will no longer "own" the CGM space. And, Abbott's Libre prices are less than yours are. Right now, because there are 3 features missing (sharing, alerts and historical data), its not really an apples-to-apples comparison. But because Abbott is entering an established market, its best way to gain market share quickly is to price its product lower than the current market leader Dexcom. 

I'm already ready to say goodbye to Dexcom https://blog.sstrumello.com/2021/06/should-i-say-adios-to-dexcom-g7-hello.html because of various issues related to repeated "Signal Loss" errors on my Dexcom G6, although I may simply wait until new products from both companies are already on the U.S. market and compare them to one another.

While some on the left of the political spectrum are pushing for universal healthcare coverage with Medicare for All, I don't necessarily see that as a realistic aim in the near-term. Instead, I believe incrementalism is the best way to get there. Many academic and peer-reviewed studies have been done about how it is beneficial to Medicare to reduce the eligibility age from 65 to 55. The reason is because doing so brings more younger people into a system which overwhelmingly serves the older, sicker populations therefore costs are inflated by doing nothing. In fact, former Presidential candidate Hillary Clinton outlined plans to do just that. From there, it is possible to reduce the eligibility from age 55 to age 50, then to age 45, etc. But some in Congress are hell-bent on ending Medicare completely, so barring a change in Congressional makeup, I think incrementalism is the best path to pursue now.

That said, some (younger) individuals mistakenly believe that Medicare is superior to commercial healthcare coverage. But the peer-reviewed science on that seem to suggest otherwise. Medicare might be OK, but it isn't the greatest. It isn't perfect. 

Anyway, when it comes to transitioning, there are already talks of reducing eligibility on Medicare to age 50 or 55. That means I would become eligible (or in just a few years). Its possible Congressional Democrats might be able to force the issue into a budget reconciliation bill, which could have direct impact on me if they did so. Whether I would do it would depend on a variety of factors. As I said, Medicare isn't perfect. 

But as far as gathering Medicare enrollment info., I have found some resources I might use to guide me into the process. That, combined with friends on the Seniors With Sensors group and I feel confident I would be able to successfully navigate the enrollment process.

Author P.S.: My friend Laddie Lindahl who blogs at Test, Guess and Go informed me that she assisted the JDRF in reviewing the information the organization had prepared in order to assist individuals with Type 1 diabetes to prepare for migrating to Medicare. Unfortunately, the page is kind of buried on the JDRF website, but she told me it can be found at https://www.jdrf.org/t1d-resources/living-with-t1d/insurance/medicare/ which might be useful reference for those seeking it. Thanks, Laddie!

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