Tuesday, August 7, 2018

Letter Abut Limiting My BG Test Strips

My third-party supplier has recently tried to limit test strips for those using a Dexcom CGM system. In fighting this policy, I penned this letter. While I've been able to get more strips as prescribed, my hope is also that this letter leads to deeper consideration at the policy level by this Michigan company.
- - - - - - - - - - - - - - - 


-->
August 6, 2018


Michael W. Hoskins
----------
----------
----------


----------------
J&B Medical Supply
---------
Wixom, MI 48393

Dear ------- and J&B Medical Supply:

I am writing this in response to recent letters received from J&B Medical starting on July 24, 2018, regarding the allowable amount of glucose test strips for those who also use the Dexcom G5 continuous glucose monitor (CGM) as part of their diabetes management.

Per your letter, “all regular diabetic testing supplies are included in the coverage of your Dexcom G5 sensor.” And further, due to the Dexcom G5 being classified as a non-adjunctive therapeutic CGM that can be used for treatment decisions, J&B Medical has decided on a policy level to only ship a maximum of 4 boxes of test strips for every 90 days in order to calibrate the CGM twice a day.

On an individual level and at a broader policy level, this blanket limitation on test strips contradicts my physician’s prescription for what is medically necessary.

Per Dexcom’s G5 User Guide, “The sensor glucose reading can be different from your expectations and symptoms. In this case, wash your hands and take a fingerstick blood glucose measurement with your BG meter to confirm your expectations and symptoms.”

In my situation, my endocrinologist has prescribed the following: 4 test strips a day, or 360 total for a 90-day prescription (compared to your suggested 180-day supply for those three months).

There are several reasons for this, as documented in my physician’s chart notes:
  • This amount accounts for not only my two required calibrations per day with the Dexcom G5, but times when I do not use my Dexcom G5 and other situations such as illness, lost data signals, and backups for hypoglycemia/hyperglycemia when clinical data shows the Dexcom G5 is not as accurate.
  • On average of 2-3 times per week, I experience “compression lows” as a result of rolling over and sleeping on my Dexcom G5 sensor. As a result, when I receive a Low alert via CGM, this requires me to confirm the CGM data with a fingerstick to ensure accuracy.
  • Additionally, the Dexcom G5 is FDA-approved for seven days of wear – or 28 days for a box of four sensors each month. That means there are at least 6-8 additional fingersticks per each 90-month period not factored into this J&B policy on test strips.
Clearly, the FDA and subsequent Medicare classification does not require a Dexcom G5 to be used instead of fingersticks. Instead, both federal agencies state that a patient may use the Dexcom G5 instead of fingersticks to make treatment decisions. Additionally, both the product manufacturer and the federal agencies recognize that accuracy may vary on the Dexcom G5 and that additional fingersticks may be necessary or preferred at times – such as those noted above.

Take my glucose readings today – my properly-calibrated Dexcom G5 that has been in place for three days displayed 226 mg/dL, while a fingerstick showed 177 mg/dL. Had I dosed insulin off the CGM reading, I likely would have dropped into the dangerous hypoglycemic range. This discrepancy is not an uncommon occurrence.

While some individuals may decide with their physicians’ guidance that two test strips a day is sufficient when using a Dexcom G5, that is a patient-physician choice and should not be one dictated by an insurance provider or third-party supply distributor.

In speaking with Blue Care Network of Michigan during the week of July 30, the insurer verified that my coverage includes both the Dexcom G5 CGM as well as any additional test strips for fingersticks that my physician determines is medically necessary; as long as a Prior Authorization is obtained, the coverage is provided.

I am sending this response letter to J&B Medical to have on file. Along with any submitted prescription and additional physician notes on file, I trust the Prior Authorization for test strips will follow what has been determined to be medically necessary – for my own diabetes care, as well as others who may also be using these products for their own healthcare.

Thank you,

Michael W. Hoskins

Friday, June 1, 2018

"Be Quiet and Leave Me Alone!"


When you're going about your day and trying to juggle the stress with everything else, with a little help from your desktop baseball stress relief ball....

 And your CGM suddenly screams for your attention...




And you respond without hesitation:


Be quiet, Asshole!

Leave me alone.

I don't have the time or energy right now to deal with a Low blood sugar.


(((sigh)))

And the moments continue to roll by, as Life is Interrupted by Diabetes once again.

(((double sigh)))

Wednesday, May 30, 2018

An Evolving Diabetes Online Community

Originally published on DiabetesMine in July 2012

Just a few short years ago, no one could have envisioned the Diabetes Online Community would become what it is today. And be moving in the collaborative direction it's going...
Seriously, some likely would have laughed at the idea while shaking their heads in disbelief!
It used to be "Us versus Them," in terms of the relationship between Pharma and people with diabetes (PWDs). There was little interaction; we didn't know them and they didn't know us.
But that's changed dramatically, and continues to evolve. We've come a long way as a community, sharing our stories and advocacy more broadly than we ever would have thought possible. But there's a long way to go still, and we seem to be at an interesting crossroads just now.
In what might be dubbed "the beginning" — a decade or so after the Internet yielded some initial forums, list-servs and message boards — a handful of PWDs took the next step by starting their own blogs to share their stories and connect with others. Reflecting on how they began, many have a similar message: To feel less alone, to get beyond the horror stories about diabetes, and to find others who "get it" and can talk outside the medical lingo.
Yep, those were the "early years," providing the inspiration for many of us to get into this. It was all about the sharing, connecting, that "me too" of finding others who get it.
That's why Amy started the 'Mine, and why I started too — first finding and lurking in that small online community in late 2005 before turning my personal blog into one focused on diabetes. And eventually combining it with my journalism career to where we are now.
Soon, the DOC began to explode. The number of blogs skyrocketed, then Twitter brought a more real-time voice to the interaction, more communities materialized, and meetups brought the online relationships into the "real world."
Then Pharma entered the picture, holding summits and forums for the DOC — first Roche in 2009, followed by others like Medtronic and Lilly and Novo in the diabetes industry.
Just a sampling of what's come from these summits: the idea for the grassroots Diabetes Advocates group, where now more than 100 PWDs have joined together to advocate and reach others; blood glucose meter commercials that reflect "not perfect" results; and some individuals being able to use certain products to report on and review them for the greater D-Community.
The crossroads we face now, IMHO, is that Pharma is getting more integrally involved in our "grassroots" efforts. These companies are working more closely than ever with D-bloggers, and not just with product pitches. More of the DOC voices are becoming frequent guest-bloggers or subjects of interviews on Pharma-led sites. Some bloggers are even working for those companies from time to time, helping cover events and spread the diabetes word for the broader community.
Take Sanofi-Aventis U.S. as an example. They've jumped into the DOC during the past year and a half, not only engaging on Facebook and Twitter but starting a blog called Discuss Diabetes in January 2011, that's featured lots of us.
They've taken other steps, too — adding an online diabetes-encyclopedia dubbed Diapetapedia that curiously resembles Bernard Farrell's Diaboogle Search Engine, with elements of the Six Until Me-created D-Terms of Endearment (even using her "Diabetes doesn't define me" line); and jumping onto the bandwagon with its own diabetes design challenge that looks nearly identical to the one our own Amy trailblazed back in 2007. And just recently, Medtronic unveiled its newest social media venture by creating a Facebook "timeline" page welcoming PWDs to share their own personal stories — for free!
This is just the way of the world now, as pharma is doing more to engage with consumers and patients. Hey, they do say copying is the best form of flattery, right...?!
We're seeing many of these kinds of efforts, that seem to "co-opt" many of the grassroots efforts we patients began online. Granted, some of these ideas we've had were borrowed from elsewhere to begin with, such as the You Can Do This Project being a D-focused twist on the It Gets Better initiative; and the #DSMA (Diabetes Social Media Advocacy) chats on Twitter being created; and even TuDiabetes in many ways being a "Facebook on insulin."
These are all brilliant initiatives created by our friends and great advocates, and no one questions their value.
But is there really a difference between what "we PWDs" are doing versus what happens when Pharma tries to do the same? Is it still authentic, and just putting these ideas "on steroids"? Or should we be skeptical about these commercial attempts to recreate our efforts?
I reached out to Sanofi's communications director Laura Kolodjeski to specifically ask that question.
"As part of our commitment to the DOC, we created these resources to connect, provide accurate information, education, and encourage dialogue. We look to, and work closely with, members of the DOC for feedback on how we can add value, and strive to provide solutions," she wrote in an email response. Very corporate-speak.
Laura says they're "having fun"... but only because the DOC has been "so accepting and willing to trust that we are interested in listening, learning and helping."
She adds: "In our experience so far, engagement is largely dependent upon each individual community member. Since initiating our online engagement, we have built meaningful relationships with some and there are many others we have yet to 'meet.' Given that our reasons for engaging are grounded in determining how to better serve the needs of the community, we look to community members to help us understand how they would (or would not) like to engage."
I guess ALL of these platforms and initiatives and voices are important. We're all sharing and building on what everyone else is doing, making it better and hopefully strengthening the D-Community's voice.
So, where do we go from here?
That's been a topic of conversation lately in a number of diabetes circles, with several bloggers writing eloquent posts on the theme -- including this one by the ever-savvy Scott Strumello who's quite informed on the business of diabetes and was an early blogger in our DOC.
In a recent DSMA Live interview, Roche Diabetes associate marketing manager Rob Muller told host Scott Johnson that this is still only the beginning of patient empowerment via online efforts.
"It's all about opening up a dialogue and making the 'business of diabetes' personal," he said.
We hope Rob is right about the notion that companies are "coordinating voices, strengthening the message and continuing to develop personal relationships, (which is) for the greater good."
Can we all co-exist, or does this community at some point become too big or full of too much of the same?
Like before, we hope the answer here is that growth has been a positive, and we're able to continue building off each other and sharing our collective voices to make a difference. Even as some of our story-telling work comes together in collaboration, we like to think we're all strengthening our community and benefiting those who might not even know they're part of it yet.
As Rob said: "What other time in history has there been a chance to have this kind of dialogue? The power and platform the DOC has built for itself is incredible, and we're awfully excited to be a part of that."
Indeed.
This is the story of the DOC. Our story, as PWDs. We're still writing it together, and we at the 'Mine can't wait to see what the next chapter is.

Saturday, March 10, 2018

A Dia-versary Note to My Pancreas (and Ghosts of Diabetes Past)

As I mark my 34th year living with type 1 diabetes, it's a perfect chance to pen a letter to my lazy pancreas.

You know, the main culprit behind this chronic condition who managed to convince my immune system it ought to attack what it shouldn't.

But before we get to that, let me recap my D-story for those who haven't heard it before.


My Diagnosis Story


Being 5 years old at the time, I don't remember too much.

I'm not exactly sure when my diabetes anniversary actually is. I have self-designated March 10, because that's as good as any date. And because it happens to be Chuck Norris' birthday, so for me it adds a theme of karate-kicking diabetes into line.

Anyway there was an overnight visit to my paternal grandparents' home. An unfolding of events that mirror many diagnosis stories -- waking up during the night, excessive thirst, frequent bathroom trips, moodiness (for a 5-year-old). My grandparents explained these symptoms to my parents, who instantly knew there was a problem -- as my mom has been a type 1 since she's been 5 years old herself.

Urine tests, which were pretty much all that was available at the time, showed results that were very high. A quick visit to the pediatrician's office had that doc pointing to diabetes, but him wanting to send me for blood tests and admission at Children's Hospital before declaring defeat. My mom recalls standing in the hallway crying, and having a staff member at this doctor's office saying to her, "Don’t worry, it’s not that bad.” Her response: “You obviously don’t know what is involved in this or what it is, or you wouldn’t have the nerve to say that to me.”

Luckily, due to my parents' preexisting knowledge of "juvenile diabetes" as it was referred to then, they acted fast and thus BGs were only into the 200s at the time I was admitted to the hospital. Tests confirmed the suspicions, but I stayed there for just three days, since I'd been diagnosed early in the "honeymoon" phase and my parents already knew most of what they were instructing on diet, injections, and so on.

The rest, as they say, is history. 34 years' worth now.

With that, I have the following "short but sweet" message to my pancreas...


Dear Pancreas...

You are damn lazy. You've not been doing your insulin-producing job for more than three decades now.

Our relationship can be frustrating and occasionally your failure really gets me down. At times, it can be scary. As I near my 40th birthday and have lived more years with diabetes than without, complications have become a reality and I do fear that more may come as I get older.

I also realize that I'm one of the "lucky" ones, as I'm able at this point to afford what I need to stay healthy. And as much as I take my health and often that access to meds and supplies for granted at times, I recognize that many don't have that luxury. And so with your help, Dear Pancreas, I use my written voice to help in whatever ways I can.

At least for the most part of the past decade, I've not been too angry -- because your slacking has brought incredible moments into my life that wouldn't have existed otherwise. Mainly, a connection to the Diabetes Online Community (DOC) where I've met amazing people. And the ability to use my journalism background to work to help inform others dealing with this disease, while also "wearing the advocacy hat" to make a difference in other ways.

For that, I must say Thank You.

You are a complex organ and many mysteries remain in trying to pinpoint the causes of T1D and why you do what you do. And make no mistake: If I could trade you in for a better pancreas, I might think about it. But all in all, I appreciate you. I'm still standing, and feeling pretty well right now to boot.


Ghosts from My Diabetes Past


I also want to recognize a few individuals who were the first to play a part in my diabetes care. We all have them -- those "first responders" who helped us get through diagnosis and learn to thrive.

For me, three individuals stand out: my first two endocrinologists and first diabetes educator, who will remain anonymous here as Dr. Friendly, Nurse Kathy, and the unforgettable Dr. Strict. To this trio, I say the following:

- - - - - - - - -

Dr. Friendly: You diagnosed me with type 1 way back in 1984. We came to see you at Children's Hospital of Michigan in Detroit. Although the details are fuzzy, my mom and I both remember that you were very nice and really cared. Unlike other docs through the years, you were very good at dealing with kids and didn't try to treat them like little adults, meaning you didn't have expectations that I'd follow rules and routines like older patients might.

Not long ago, I found you on Facebook and it's been great to reconnect online! I believe every PWD should start their journey with someone caring like you, because what mattered most to my 5-year-old self is that you didn't make diabetes scary; you made it seem doable.

- - - - - - - - -

Dr. Strict: You teamed up with Dr. Friendly a few years into my diagnosis, and we were together through the time I was about 18. While I remember you knowing your diabetes management tenets of the 80s and 90s, we didn't see eye-to-eye on how to communicate.

You were very tough and liked to use scare tactics to convince me why D-Management was so important. What you didn't realize was that your attitude and judgement made me rebel even more. I heard those horror stories all the time, and didn't need your reminders at every visit! Of course, my double-digit A1Cs were bad news... but the support and two-way discussion I needed wasn't your strong suit.

Now of course I regret not taking my diabetes more seriously back then, as you were just trying to make me understand. One memory stands out among the rest: You looked into my eyes after seeing my 15% A1C, and told me that I was killing myself and would be dead by 21 if that continued. Yes, that was harsh but it was a truth -- and it set me straight for a time. So that particular scare tactic worked briefly, but it didn't inspire long-term change. That didn't happen until many years later when I found hope, a purpose in my life, and peer-support that truly gave me the empowerment and motivation needed. And make no mistake: long-term motivation is the stuff of survival.

- - - - - - - - -

Nurse Kathy: You were the face of my Diabetes Care Team, the person that I always looked forward to seeing and working with when I came into the office. I understood that you were "overseeing" all aspects of my day-to-day D-management, and our family could reach out to you at any time. You wrote a touching letter for me about several years ago when I was applying (belatedly) for my 25-year recognition certificates from Lilly and Joslin, and I think that quoting that letter here would be the best way to illustrate how much impact you've had in my D-Life:

I have known Michael Hoskins since March of 1984, when he was diagnosed with insulin-dependent (type 1) diabetes at the age of 5. I recall specifically that Michael was 5 when diagnosed, as that was the same age his mother had told me she herself was diagnosed with diabetes. I continued to work with both Michael and his parents through our outpatient clinic, until I left my position at Children's Hospital when Michael was 17 years old.

It is with great pleasure that I write this letter, and I smile even now when I recall the image of 5-year-old Michael for two reasons:

1. Michael had a stuffed animal, "Froggy" that he held and dragged around with him (as seen to the right, in a pre-dx'd pic with my mom's parents).

2. He always lit up with a smile when 'Nurse Kathy' came to see him.

Mr. and Mrs. Hoskins were in regular contact with me through the years I worked at Children's Hospital, and I recall providing helpful hints to his mother when he was getting ready to start school and continued with regular contact on the phone as well as at clinic visits as Mike grew and developed. I remember that both of his parents highly respected our advice in regard to handling Mike's teenage years, and I was always proud that the love and limit-setting they provided helped him (and them) make it through his growing up period without any obvious physical or emotional scars.*

Since 1996, I've continued to maintain contact with Mike and his family as a friend and at times a consultant. I have seen Michael grow from a brave little boy who did not complain about taking insulin injections or having to follow a diet, to a mildly rebellious teenager and now to a responsible man who is married, working in the newspaper industry, and taking charge of his diabetes control.

*See? A health professional attests that I have no scars -- all good!

Nurse Kathy, thank you so much for all you've done for me through the years. You now have your own private health education and consulting practice and it looks like you're doing great. The advice and care you gave me when growing up helped empower me, and that's been invaluable.

 - -- - - - - -

Now that I've moved on from general and legal news reporting to diabetes journalism here at the 'Mine, and in connecting with many more CDEs through the years, I can appreciate even more how much you did for me early on. Also, just so you know: Froggy still sleeps with me each night, as he's still my special "Frog Before Diabetes." There aren't many memories or items that have stuck with me from those very early days, but an image of your face always did -- and still does now -- bring a smile to mine. All I can say now, once again, is Thank You!



So, whether your diabetes diagnosis was over 30 years ago, like mine, or whether it's another day of the year or even a day you don't remember, happy diaversary to you too! Here's to long life with many positive influences!

Thursday, February 1, 2018

Happy 39th Birthday To Me + Spare a Rose 2018

Hello, 39.

The final year of my 30s begins... before that big milestone birthday that has been creeping ever more closely. Now here we are.



And in just over a month, that diaversary time will also be here once again.

Amazingly, I look back over the years and find the Diabetes Online Community (our beloved #DOC) has certainly been one of the highlights in the context of diabetes. I find it incredible that a dozen years have now gone by since first finding those early blogs. So much has changed, and it still fascinates me that I managed to care about this enough to merge it into my career path.

Never would have predicted that earlier in my life.

Anyhow, that mantra of You Are Not Alone continues to ring true and my most recent visit to North Texas for a JDRF summit reinforced this message. Our D-Community is incredible, and seeing the peer support, the heart that so many have is priceless. It fills the heart with so much joy.

I'm a bit bummed that I came down with a head-cold while traveling on the short trip, but luckily with the state of influenza these days I'm glad it didn't materialize into anything more severe (cue PSA here for flu shots!). This small little bug passed just in time for the b-day celebrations, so that's a bonus I guess...

How am I marking my birthday?


Well first of all, it's 39 and not 4-0 (shudder), so it's really just another birthday. As this one falls on a Thursday, I will have a regular work-day. After hours, I'll certainly be enjoying some good craft brew near home with some friends and enjoying time with those I love.

Of course, there's another diabetes-related aspect to the birthday scene, as well...

I'm once again embracing the Spare a Rose, Save a Child campaign that always kicks into gear this time of year as we head into Valentine's Day.

The idea is simple: to use the power of social media and our ever-growing online D-community to do good. Instead of buying the typical "dozen roses" that are so popular on Valentine's Day, you buy just 11 and donate the value of that last flower to help a child with diabetes. You still get to be romantic and give your loved one roses, while you both show some love to someone who really needs it.

Now for 2018, this is going to be the 6th year. Spare a Rose has raised nearly $97,000 since its inception in February 2013. All of that money has gone to support the International Diabetes Federation's (IDF) Life for a Child program, which was founded in 2000 to help children with diabetes in developing countries, those who might otherwise die immediately or have a short life without this assistance.

This is a cause I fully support, and each year when my birthday rolls around, I make a point now to promote this campaign while also making a donation.

Here's to making a difference in the world, one "rose" at a time. To me, that's a pretty good way to mark my birthday.