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.

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.

Sunday, September 10, 2017

Speaking Up on the Insulin Pricing Crisis

As I've shared, I took part in a protest recently in front of the Eli Lilly headquarters in Indianapolis, aimed at drawing more attention to the serious issue of insulin pricing in America.

This was organized by the UK-based group T1international, and being a part of this was a personal one. I was wearing my personal advocacy hat here.

Roughly about three dozen of us came out to this event on Sept. 9, what will be the first in a series focused on insulin manufacturers (and hopefully others such as Pharmacy Benefit Managers that are part of the problem.

Ahead of time, I wrote out a speech. But of course, I deviated and went off script. In large part, because I was the third of three speakers and felt a decent amount just echoed what had already been said. So, I rambled on through it and left out some good chunks of what could've been said.

I'm sharing that here, to put it out there.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 

First, let me just say thank you to everyone for being here on this nice sunny day, with all the news of the hurricanes south of us here and the wildfires in the NW. So I just want to say thank you even more for being here despite all of that in our hearts and minds.

My name is Mike. I've been living with type 1 diabetes since I was five years old, more than 30 years now. I used to live here on the Southside of Indy, before moving back to Michigan a couple years ago.

And I worked downtown just a couple blocks away. So I drove by this Lilly building every morning on my way to work.

At first, I was in awe and humbled by the history it represented, since I’d been taking their insulin since I was a little kid. But over the years, it got more difficult to look at this building without feeling frustrated and angry. This was from 2006 to 2012.

Insulin prices kept going up for a single vial, not just here at Lilly but across the board.
  • Roughly 300% in just the past decade or so.
  • Over 1,100% since Humalog was first introduced 21 years ago.
More and more people can't afford insulin. No matter what Big Insulin says about people paying the list price or net price, 57% of people using insulin pay the actual retail cost at some point during the year. Lilly knows this first-hand.

That happened to me a couple years ago.
  • $700 a month to get 3 vials of Humalog per month, back in 2015.
  • That was more than half my housing cost per month.
  • Had to get samples from my doctor. 
  • Borrow insulin from a friend. 
I have good insurance coverage now and only pay a fraction of what it would cost otherwise, but it scares me so much. Without insurance, I'd have to pay $1173 a month just to get the two different types of insulin I need to survive. That's outrageous.

I'm certainly here speaking for myself, sharing my story and how I feel about this personally. But I think we've all seen how big a crisis this is.

I think it starts with transparency.

We can’t fix a problem until we truly know what that problem is.
  • Why does it cost $300 a vial for insulin, when a brick of 10 vials at a federal clinic only costs $30?
  • If I'm told it's because they’re spending money to make new insulin, then I want to see proof it’s not going to marketing costs. I want to see exactly the dollars spent on R&D for insulin, not just a lump sum of how much the company spends overall on all of its product development. 
Let me see the data and decide for myself, just like I do for my own budgeting at home.

The insulin companies are part of it and need to do better, as do Pharmacy Benefit Managers + Insurance Companies and others. They all need to do better.

So many of us get frustrated when we’re told “it’s complicated,” but that’s the truth. It is complicated. But we can't stop there and let that be an excuse. The Pharma companies can't just flip a switch or push a button to lower insulin prices. But they can do better.

Someone told me recently:
"I don't see an easy solution to the insulin price issue, because we are dealing with a multi-tentacled monster on the health care front, with each tentacle attached to our wallets."
To be fair: Lilly and the other insulin companies do a lot of good in this world, including helping people out affected by the historic storms we’re seeing. But that doesn’t make up for the fact that they’re failing where it matters most --

  • People can’t afford the insulin or get access to it
Pretty amazing. Honestly, it seems like they’re just paying lip service to the idea of meaningful transparency.

And that's why I think Congressional action, lawsuits, media coverage and public pressure is all so important. It’s how we get to a place where we want to be: Lower insulin prices for everyone in the US.

Thank you.

###

Thursday, August 31, 2017

Appeals Letters... Fighting for Diabetes Meds I Need


I've wanted to share these two appeal letters that my doctor and I crafted in order to get the needed insulin.

Clearly, this is our decision. Non-medical switching isn't cool, and I don't want to be a part of it. When it comes to my medicine and health supplies, my doctor and I should be the ones deciding what's best for me --not an insurance company or Pharmacy Benefit Manager (PBM) and insurer that sets a formulary.

And so, once my insurance company offered an initial denial for each of these requests, we fought back. For the sake of #PrescriberPrevails -- because this is our choice to make, not anyone else to make. That is basically practicing medicine without a license, and that's illegal.

Here are my two appeal letters, one for Afrezza inhaled insulin and another for Tresiba basal insulin. Both succeeded in getting coverage from the said insurance company.

My Afrezza Appeal Letter

https://drive.google.com/file/d/0B05u4rlsHt-iTjhHTExIZTlmSTQ/view?usp=sharing


My Tresiba Appeal Letter

https://drive.google.com/file/d/0B05u4rlsHt-idE9iNkVmY2k4bHM/view?usp=sharing


Hope these are helpful, for whatever they're worth to people. It all comes down to #DiabetesAccessMatters#PrescriberPrevails, and #KeepMyRx. My doctor and I should be making these decisions, not anyone else.