Blowing off The Dust…

picture-frame-ii-5-1548047-640x480I just ran a finger over this blog and dust flew everywhere.

Sorry.

It’s not that life with diabetes has stopped and I have nothing to talk about; exactly the opposite.

The Diabetes UnConference is coming up in Atlantic City from September 9 – 11, 2016.

DPAC (Diabetes Patient Advocacy Coalition) has new actions and a lot of measurable successes and some important issues coming up.

It’s conference season and I’ve been traveling…. ADA in New Orleans, CWD in Orlando, AADE coming up in San Diego, with a trip to DC to speak at a Congressional briefing thrown in for good measure. Summer is always a happy time for me, as I get to see so many amazing advocates and learn from them.

I’m on the pump, off the pump (Tresiba), on an untethered regimen, adding inhaled insulin… I’m an experiment in the making. My blood glucose levels are not optimum for me as I switch around, but it’s summer and I’m more focused on quality of life than a single A1C.

There is so much welcome news on the Artificial Pancreas front! Bigfoot Biomedical is starting clinical trials. Betabionics is now working with a company with stable glucagon, pushing the dual hormone AP forward. Medtronic is closer to getting FDA approval for its newest AP version. TypeZero and Tandem are working together.

Dexcom G5 got a boost for the non-adjunctive label at the most recent FDA hearing. I know that many in the community don’t see this as a good thing. I’m of the mindset that each of us make our own choices on which tools are best for us to use, based on decisions made with our medical team. Some individuals have no issues with accuracy; others do. There is concern about how this will impact payers and reimbursements and approvals. I get all that. It’s always been an uphill battle to get the supplies we need, but for those on Medicare and heading into Medicare, this decision is important.

And then there is this:

I’ll be migrating over to a new hosting provider very soon. Everything should look the same (you shouldn’t notice much of a difference, I hope), but I have heart palpitations when I think about it.

vaporizer-1427429-639x852So, there will be a brief spring summer cleaning to get rid of the dust and cobwebs and I will be back giving you a piece of my mind regularly. I’ve missed you…

 

 

 

And What Am I Doing In This Hand Basket? #dblogweek

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Today’s topic: 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?

A little backstory: When I was at university and living in the dorm, this was tacked on my door.

Basket

 

There are days when I feel like we are all going to hell in a hand basket if we don’t stick together. Diabetes can be fatal, debilitating, and maddening. It has also brought me some of the best friends I could have ever asked for and a tribe of like-minded people.

So, my message is this: Diabetes can suck. Hard. But when you reach out and share the realities of living day-to-day with it, you find that others not only have the same experiences, but they may have insight on how to make it suck less. And as you learn to make it suck less, you find ways to raise your voice and share how it could suck less with people outside of the tribe… like policy makers.

I want to make diabetes suck less. And be real about it. And take action.

Here is how I try to make diabetes suck less: 

The Diabetes UnConference (This is where you can find your tribe and love them hard.)

Diabetes Patient Advocacy Coalition (You can make diabetes suck less for over 29 million of your tribe – including you, by taking action.)

And if I’m going to wonder what I am doing in this hand basket,

at least we will all be wondering together. 

 

 

Shout out to the amazing Karen Graffeo of Bittersweet Diabetes fame for creating this annual event (7 years running!). It’s wonderful to read so many posts and discover new blogs and new voices.

 

#DiabetesAccessMatters – Share Your Story

Tell it.Now.-2Everyone has a story to tell.

Our lives are a collection of stories. Some are silly and happy, others filled with heartbreak and sorrow, and some flow with frustration and anger. These stories may be short and sweet or long with plot twists and abrupt endings. Whether we share them or not, we have stories to tell.

For people impacted by diabetes, we have stories that resonate within our community. Stories of hypoglycemic reactions or DKA, mentors and supporters in our healthcare system, and stories of access to the technology, drugs, and care that keeps us alive.

We want the diabetes access stories, because they matter.

By we, I mean the diabetes community. Last week, diaTribe’s Adam Brown and Kelly Close gathered a group of individual advocates and diabetes advocacy organizations on a call, prompted by the recent decision by United Health Care to restrict access of insulin pumps for adult members. While the conversation began with the decision, it quickly became a discussion about overall access… not just insulin pumps.

And from that call, it’s clear that while we all have access stories, there was not one place to house them all. We needed that, so Diabetes Patient Advocacy Coalition has stepped up to collect our stories to share with the public, including the healthcare community and policy makers. By providing these stories, we can build a plan to connect patient access issues and solutions that include our community. (I’m a big fan of “nothing about us without us” and having a seat at every table that makes decisions about our community.) 

Why #DiabetesAccessMatters NOW?

I’ve seen comments in the community that range from: “I’ve been talking about restrictive access to diabetes supplies for years and no one seems to listen!” to “Why did insulin pumps get people screaming and not meters or insulin?”

Here’s my take:

  • If you are one advocate or one organization, you’re not going to make much noise. Sorry to burst that bubble, but hell, I know this first hand. It takes a united front across several diabetes organizations and several advocates to impact change. There just hasn’t been that unified commitment groundswell until now.
  • It’s always been about access. We individually mount campaigns within our individual insurance plans for overrides on the amount of strips. We individually ask our healthcare team to appeal a decision on the type of insulin insurance will cover. We individually spend hours, days, months building cases for Medicare coverage for CGM. We have the tools and technology now to build a unified front.
  • The tipping point was insulin pumps, but the issue is access. It could have been meters or insulin or any aspect of treatment. Perhaps it should have been something else (we’ve tried in the past to raise the access alarm), but we’ve morphed quickly from #MyPumpMyChoice to #DiabetesAccessMatters because it’s about more than insulin pumps.

Why is DPAC Collecting The Stories?

NYC-2Because DPAC represents all individuals impacted by diabetes: Type 1, Type 2, MODY, Gestational and families of people with diabetes.

We work with ALL diabetes organizations that may specialize in one or two types of diabetes (i.e. JDRF is a wonderful organization, but they represent only Type 1 PWD.), to amplify the voice of the patient. The diaTribe Foundation is a 501(c)(3) and cannot use the stories for lobbying policymakers; DPAC can. (DPAC is a 501(c)(4) non-profit and the big difference is political lobbying.)

But the stories are for all organizations and advocates to use.

Your story will be shared across the community.

Your story will be used to show the frustrations and roadblocks to access and choice.

Your story becomes part of the larger story we share with insurance companies and policymakers.

Your story is worth telling.

Because everyone has a story to tell.

Tell yours. 

How is Milk Like Insulin Pumps?

Meet Bessie.

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She’s a cow. She produces milk that her farmer sells to a large dairy so that people can drink it.

But not everyone likes milk produced by Bessie.

Other farmers offered different cows:

 

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This cow (I’ve named her Daisy.) only eats organic grass.

She produces a different milk that her farmer also sells to a large dairy.

But other farmers, smaller farmers, offer milk… not from cows.

They offer milk from almond trees. (I’m not naming this tree. That’s all on you.)

They offer milk made from soybeans. (His name is Bob.)

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And so everyone who wanted to drink milk could choose what type of milk they wanted:

  • milk from Bessie, or
  • milk from Daisy, or
  • milk from Bob or…
  • milk from the unnamed almond tree that you’ve named in your head, because you feel bad.

Some farmers couldn’t compete in the production of milk. They shuttered the barn doors. But other farmers continue to work on making their milk better and healthier, giving alternatives if one type of milk isn’t the best choice.

Most of that milk goes through dairies (Yes, I know that soy milk doesn’t go to a dairy. Work with me.) and we get that milk by paying dairies. Some dairies offer lots of choices; other dairies only carry one type of milk.

We pay them, we get milk. Sometimes we pay more, depending on what dairy program we use.

The dairies contract with the farmers to get the best price on milk.

One day, one of the largest dairies decide that they are not going to offer almond or soy or even organic milk to its customers.

Monopoly Milk

milk-container-1507753-639x852They have been talking with Bessie’s farmer and negotiated a deal to get a better price to save money. Part of the agreement is exclusivity. For the farmer, who is a business that gets paid by the dairy (and not those of us who drink milk), it’s a great proposition.

For those who drink milk from that dairy, you get Bessie milk or no milk at all.

Sure, you can go to another dairy, but some people can’t change dairies. They’re stuck. Who is angry?

  • The other farmers are angry. (They just aren’t large enough to be able to offer exclusivity because they have small farms.)
  • The customers of the dairy are angry. (What if you tried Bessie’s milk and it didn’t make you healthier, but Bob’s milk did?)
  • Friends of the customers of the dairy are angry. (They still get to choose milk from Daisy.)

Now, some of us like Bessie’s milk. And the farmer. Some of us don’t. Bessie isn’t for everyone and that’s OK.

Who Gets Poked By A Pitchfork Over Milk?

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There’s a lot of anger and sharpening of pitchforks. But here’s the question. Who should you poke?

  • Should you poke the farmer because they are the largest and produce the most milk and offered a great financial incentive to the dairy? The dairy didn’t have to take the offer.
  • Should you poke the government, as some suggest? Would it help?

If you want to raise the pitchfork and poke at anything, direct your anger to the dairy. The dairy chose to stop selling different types of milk. The dairy is a business that is paid by customers and serve as the middleman between the farmers and the drinkers of milk. They did not have to sign an agreement that was offered. Customers can complain, but they need to complain to the right business: the dairy.

The dairy is the only entity that can give back the milk choices.  And the community should be the ones to get the dairy to give back the milk choices. Expend the effort on the dairy.

Now… some people who want milk can’t get any at all. Some dairies tell customers that they can’t have milk or they can’t afford the milk offered. And some customer don’t have dairies in their country. That is recognized. That’s another pitchfork rally, just not for today. Today, it’s about the choice of milk being taken away from paying customers. 

And If You’re Still Wondering How Milk Is Like Insulin Pumps?  

Hint: This is not about milk.

This is about access to different types of milk.

I like milk. All kinds of milk. I want to keep more than one farmer in business.

I like insulin pumps. I have used a few of them.

Milk = insulin pump in this post.

Let’s not cry over the spilled milk. Let’s make sure that there is more types of milk available to the community.
 

 

 

#HealtheVoices16

HeV16 Theme GraphicIt’s taken me a few weeks to get back into the swing of things (and by things, I mean life), but I wanted to share my takeaways from the most recent HealtheVoices conference in Chicago. There are some other blog posts that will talk about what happened, but I’m going to give you my perspective. And you know that it will be honest and forthright, because that’s who I am.

Not a wallflower.

 

HealtheVoices is designed to bring advocates from different health conditions together to learn about how to amplify our voices online and create deeply rooted connections. (In fact, the tagline for this year’s conference is “Deeply Rooted Connections.”) I attended last year and was honored to be asked back to be an advisor for this year. (Disclosure: Janssen Pharmaceuticals and Everyday Health paid my travel, lodging, and compensated me financially for my brilliant mind. They did not ask me to write about this and didn’t pay me to do so. I don’t do that. )

HEV16_Advisor

Who?

There were over a 100 of us (which is almost double the amount from last year) and we spanned a wide range of conditions: HIV, Mental Health, RA, MS, IBD, Psoriasis, Cancer, HepC, AFib, Blood Clot, Diabetes, and more. We were there to connect and learn – from each other and from experts.

What Happened?

20160415_healthevoices_127People talked. (Yes, that’s me.) I was able to share my story and my passion about my community, ending with what I believe: “Find your tribe. Love them hard.” And my tribe got bigger that weekend. I wanted to hear what other communities were doing and how we can support each other.

I’m so impressed by what many of these individuals have done with their own passions. Some choose to share their lives out loud in public to help others get the information they need, others to help create safe communities where shame and stigma do not exist, and others to make sure no one feels alone.

It Was Like Inside Out

There was joy in seeing friends and meeting new people. Sadness when it was time to go. Fear from some on how to take all we learned and apply to to our own lives and communities. Disgust at a TSA officer who questioned an individual about her handicap. There was anger at some of the things that keynote speakers said during presentations.

OK, a lot of anger.

 

Jamie Heywood and Dr. Kevin Pho, MD were our keynote speakers and reflecting back on their presentations, they weren’t really geared to a patient advocate audience, which made for some contentious moments. (I’ve given some suggestions for keynotes next year. Stay tuned.)

The Sessions

One of the awesome takeaways was the visual creation happening during the sessions. I’m sharing a few that I thought are worth examining further:

Compassion Fatigue

We have it. Any of us who care for someone else, even remotely and online, can experience this. (It can also be called burnout, which is more real to me than just “fatigue.”) I had a wake-up call with this and I know I’m not alone. I love: “No is a complete sentence.”

Let's Talk Compassion Fatigue_Talk 1_Small

 

Keeping It Fresh

How many times can you talk about a low blood sugar? How can you create a content calendar that you can live with? How do you define your writing and what content you share with others?

I loved Amy O’Connor and Rose Pike’s discussion on headlines. Big time. That’s another post in itself.

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Better Together

While this was one I couldn’t attend because it was being offered at the same time as Everyday Health’s Keeping It Fresh session, I was able to get great insights and ideas from this visual representation. (And I’ve already started to incorporate some of the Top 10 rules.)

BetterTogether_small

 

What’s Next?

We will be making our own journeys this year. But we’re not alone.

Ask questions. Connect with people who may be outside of diabetes how they do it. How they live? What they do to advocate for themselves and others? What can we do together? How can we make it better, easier, or if nothing else, more exciting as we all travel our own health journeys.

I’ve got my bags packed. And my traveling buddies. Let’s go.

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Find your tribe. Love them hard.