Two Minute Diabetes Advocacy: 21st Century Cure Act + CGM

708615_95129272One hundred years ago, those of us with Type 1 diabetes would be pushing up daisies. Pining for the fjords. Deader than doornails. Not living.

Today, thanks to amazing researchers and the advancement of technology, we are living longer, healthier lives. We are living in the 21st Century. No flying cars or Jetson butlers, but yet… we are making headway, at least on the healthcare front. But we need your help.

Here’s your two minute diabetes advocacy challenge for today.

(Less time than it takes to pop some microwave popcorn!)

The 21st Century Cures Act is a bipartisan (meaning both Democrats and Republicans are interested, which you know is rare!) attempt at vaulting U.S. healthcare into this century by changing the ways drugs, devices, and treatments are approved and marketed. It’s a whopper of a draft bill, currently, with five sections:

  • Title I—Putting Patients First By Incorporating Their Perspectives Into The Regulatory Process And Addressing Unmet Needs
  • Title II—Building The Foundation For 21st Century Medicine, Including Helping Young Scientists
  • Title III—Modernizing Clinical Trials
  • Title IV—Accelerating The Discovery, Development, And Delivery Cycle And Continuing 21st Century Innovation At NIH, FDA, CDC, And CMS
  • Title V—Modernizing Medical Product Regulation

If you want to read all 393 pages of the bill, have at it here.

There is a section for “Breakthrough Devices.” As The Regulatory Explainer (an amazing site!) explains:

As with breakthrough drugs, breakthrough devices are those which represent “breakthrough technologies,” are intended to treat conditions “for which no approved alternative exist,” offer “significant advantages over existing approved or cleared alternative,” are “otherwise in the best interest of patients”  and/or have the potential to “reduce or eliminate the need for hospitalization, improve patient quality of life.”

Continuous glucose monitors (CGM) fall soundly into that category and are currently covered under many private insurance plans (and some state plans), but once you age onto Medicare, if you have Type 1 diabetes and use a CGM, say good-bye to your coverage of that device. Out-of-pocket is your only option, and it’s cost-prohibitive. As people with Type 1 diabetes live longer, we are seeing that the tools that will help us most are not being offered by CMS/Medicare. This has to change.

We need to ask the Energy & Commerce subcommittee to include continuous glucose monitor (CGM) coverage for Medicare participants in the 21st Century Care Act.

Here’s where you can help in less than two minutes. (Throw that popcorn into the microwave right now.)

Got Twitter? Yes? Go!  

(No? Sign up for Twitter and help raise your voice to your representatives in Congress. They do listen! But it will take a little longer than microwave popcorn.)

Hit the start button on your microwave.

1. Click here. (http://www.stripsafely.com/the-twitter-page/) and read the quick info on that page.

2. Find out if your state representative is in the Energy & Commerce Subcommittee list on the page. (If you don’t know who your rep is, click here and enter your zip code. Voilà!)

3. Find your state and your rep and click on the “CGM in 21st Century Cures” and TWEET!

4. Share that page with everyone you know. (Look for the SHARE THIS link at the bottom of that page.)

5. You’re done. Carefully open that bag of microwave popcorn; contents may be hot!

Thank you for letting your representative in Congress know that including CGM coverage for Medicare participants is the right thing to do. No one should be denied coverage of this breakthrough diabetes device because of age!

#HealtheVoices15 – Peeking Into Other Patient Communities

When you are living with a chronic illness, your view on your particular disease can be laser focused, and that’s perfectly fine. We want to raise awareness, to share our stories, and to connect with others just like us. That’s what builds strong, impactful communities.

healthevoicesconferenceI learned this weekend at the Health eVoices conference that we must peek into other patient communities. Health eVoices was the brainchild of Janssen Pharmaceuticals, who paid for my travel and lodging expenses to have me (and about 60ish other patient advocates) attend and participate. They paid my travel and lodging, but not my opinion and thoughts about what happened there. These thoughts and opinions are what I want to share…

Our Community Is Not Unique

There were patient advocates from many communities: HIV/AIDS, Rheumatoid Arthritis, Psoriasis, IBD, Crohn’s, Colitis, Cancer, MS, Mental Illness, and Castleman. (More on Castleman later.) These individuals may not be the loudest or most prominent voice in each community, but as I keep saying: every voice matters. They speak from their hearts, their passion pours from every pore, and they want to bring their experiences out of the darkness and into the light where they can be a beacon to others.

We all want that. Each community wants to be heard, to be understood, and to be recognized – not just by the general public, but by decision makers and people who can make their lives easier. Our Diabetes Online Community is filled with powerful voices, but we aren’t unique; so many other patient communities have powerful voices, too. I spent a lot of time at Health eVoices thinking about how we can connect and learn from other communities (and I’m sure that I wasn’t the only one).

Learning From Others is Crucial

Dr. Zubin Damania is a name you probably wouldn’t recognize, but you might have heard of ZDoggMD. He was our keynote speaker on Saturday morning and while I was a little skeptical sitting down (“What the hell? A doctor turned comedian – comedian turned doctor yukking it up about healthcare? Please.” Obviously, four cups of coffee that morning did not make me feel particularly perky.), by the end of his talk, I was ready to throw my glucose meter on stage in tribute. (Don’t worry, I didn’t. Would have probably smacked him in the head and I hadn’t downloaded the data yet.)

He talked about how he got to where he is today, and how he uses humor to raise awareness through some hysterical (yet medically correct!) videos – and then about his vision of Health 3.0 through programs like Turntable Health. (50% of the patient exam rooms are actually consultation rooms where patients and medical teams can have conversations face-to-face in comfy armchairs.)

I will also always sing Usher’s “Yeah” if I have to give CPR because of ZDoggMD. So will you after you watch this (and I suggest you do!).

We also listened to Susannah Fox, a health and technology trendspotter (her term) and trendsetter (my term). She was our afternoon keynote speaker, and also talked about how far we’ve come from the paternalistic doctor-patient relationship to today’s savvier patient – and yet, we have so much further to go. While I typed from my laptop, checking my Twitter feed from my smartphone, she shared statistics about the inequality that still exists for patients who can’t really access the resources that are needed to take control of their own healthcare or help others in their family.

There were smaller sessions focusing on creating a living as a patient advocate (Chronicbabe is the bomb, sharing everything from her bag of tricks and being very open about how she translated her patient life into a living.), compassion fatigue with Dr. Koffman and the DOC’s Kerri Sparling, the legalities of blogging with Jimmy Nguyen, and tracking analytics with Tim Cigelske.

But it was the people sitting in the seats next to me during the sessions and meals that gave me the most to think about. As much as we complain about people not understanding diabetes, I found myself being one of “those people,” asking what is probably simple questions that individuals of that disease answer over and over and over. Like many of us in the Diabetes Online Community, they were gracious and responded with articulate and heartfelt answers. There wasn’t enough time to learn about all of these diseases, but learning about them is crucial.

We All Try To Make It Look Easy

I say this all the time with diabetes: our goal is to live long and healthy lives with as few complications as possible. It’s not just with diabetes. It’s every chronic health condition and every illness that impacts us on a long-term basis.

HandI watched as people checked blood sugars (“Go, diabetes tribe!”) at lunch tables, grabbed ice packs and heat packs from the relaxation room that Janssen so thoughtfully provided for their swollen joints, checked on family members via text and phone calls in hallways, swallowed pills during sessions. We all try to make it look easy to not be the victim, but this group of advocates made it easier to be open about our particular issues. I was surrounded by amazing strength and resilience, even when it’s difficult to move and function “normally.”

So, What’s Next?

What can we do, as communities, to help others? For me, my takeaway was this: I want to learn more about other patient communities and reach outside of the diabetes community to strengthen us – and by us, I mean patients – all patients. We all know someone, right? (You’re not a hermit.) There is someone in your circle of friends who is at risk for breast cancer, a blood clot, or other health condition. You may have met someone with Crohn’s or MS, but you might not have met someone who has Castleman Disease – because they don’t even know they have it yet.

Let’s learn from each other. Support each other. Find ways to connect and share and raise each other’s voices to build stronger patients – and in doing so, strengthen everyone’s community.

I learned this weekend about Castleman Disease from Raj, a medical student in Nashville who was diagnosed with this rare disease. What if I told you that most people are misdiagnosed? Wouldn’t you want to know a little more about it? I do, because you never know who you’ll meet that might need your support.

Here is just one resource about Castleman Disease for you to quickly learn about it. I challenge you to read it and then file it away in your big brain. I will be sharing more information about different chronic diseases so that we can all become better educated, raise awareness, and get our voices heard. What can you do today to do the same?

Hint: Share this post. Share information about Castleman. Ask someone about their own chronic illness – and learn from them. We are one patient community, made up of many patient communities… all brave, all eager to share, and all looking for support.

 

Here, There, and Everywhere: The Impact of The Diabetes UnConference

10450528_10153177751732328_8584133040017261821_n-2My diabetes doesn’t take a time out. There’s no napping, no long weekend out of the office, no sabbatical. I drag this sucker everywhere and even if it doesn’t play nicely with others, it gets to come along for the ride.

And I’ve been doing a lot of riding (as well as writing) these days. Word is getting out about The Diabetes UnConference which means I’ve been sharing my experience (and getting feedback from other people) here, there, and everywhere.

I’m sharing these here, because it gives you the opportunity to get acquainted with new blogs, new voices, and great communities! Attendees of The Diabetes UnConference have been talking about their own experiences here, there, and everywhere.

And Like I said… I’ve been talking about The Diabetes UnConference a lot these days with others:

Shawn Shepheard is the creator of Sugar Free Shawn and one of the most positive people I’ve ever had the pleasure to meet. He makes me show my goofy face and I find myself using jazz hands when I talk with him. This is a good thing. Check out his website here.

I also chatted with Daniele Hargenrader of Diabetes Dominator – not just about The Diabetes UnConference, but life with diabetes in general. (Do you know her? You should! What a dynamic force!)

One of my goals from The Diabetes UnConference of continuing crucial conversations outside of The Diabetes UnConference is blossoming… Diabetic Connect has graciously extended a hand in making these dialogs part of the larger diabetes community:

Heather Gabel delves into the words we use when talking about diabetes – a topic that we touched on at The Diabetes UnConference.

Here is my first pass for a call to action that came out a discussion about diabetes discrimination and stigma.

un-diabetes-conference-fullcolor-iconWe’ve begun something that I believe is unstoppable at The Diabetes UnConference  – and I can’t wait to propel it even further as a community through some of the initiatives we discussed there, as well as inspiring new conversations next year.

Early Bird Registration for next year’s Diabetes UnConference (March 10 – 13, 2016 in Las Vegas) opens on May 1st.  We are not just here in our words above… we will be there… because we understand that we are everywhere. Come get involved.

Sugar Surfing

SugarSurfingSquareLogoThe concept of riding the blood sugar wave to keep them in range would not be possible without the ability to watch your CGM carefully, predict what will happen, and microdose (whether by syringe or insulin bolus). Many of us would love to become surf masters, and there is someone out there who wants to help: Dr. Stephen Ponder.

Someone on Facebook posted about this man, a T1 himself (47 years!) and pediatric endocrinologist, about his “sugar surfing” concept. I was intrigued, as I’m in the constant quest to spend more time in range. His information is practical and helpful and he doesn’t tell you to eat cardboard and exercise 15 hours a day (not that anyone would ever suggest that, but you get what I’m saying…).

You can learn more about him, watch his videos, and download some cool PDFs on important topics (like sick day rules and ketones) here. 

Last summer, he announced that he was crowdfunding a “Sugar Surfing” book and I wanted one immediately. The book is in final stages of publication, but I believe he’ll have an overrun and you may still be able to get a book. You can click on this link here to order it. 

I’m not getting anything for giving you this information. (Dr. Ponder doesn’t even know who I am!) However, I’m all for tips and tricks that make sense, and I want to pass it on.

Do you have any book recommendations? I’d love to hear about them!

Forever Arriving:

IMG_0839I’d love to give you a comprehensive synopsis of what happened at the inaugural Diabetes UnConference in Las Vegas a few weeks ago, but I can’t.

It’s not because of the social media blackout (more on that later in another post) that the attendees agreed upon at the beginning of the sessions so that people could talk freely about personal issues.

It’s not because no one took notes or had nothing to say. Others have already spoken eloquently about their experience.

It’s because I can’t yet fully wrap my arms around what transpired, because they are filled with my heart. And my heart is filled with emotions I thought I could handle, but apparently… silly me. Two weeks later and I find myself struck mute, throat constricted from a remembered confession and the gratitude of brutal honesty.

As Stephen Shaul says so beautifully:

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

About Us

He (and many others who have said much the same) is right. It was – and will always be – about us. Not just those physically present in the room at The Diabetes UnConference, but the “us” of our community. I’ll talk about the logistics and what worked and what didn’t – but the crux of what made this event so indescribable was the people and their individual experiences.

We are more than our diabetes, more than our diagnosis, more than our desires for a cure… but if we don’t discuss day-to-day living and “scary” or “taboo” topics with this chronic disease through deep, meaningful interactions (whether online or face-to-face), we run the risk of feeling isolated and disenfranchised.

1436965_20488329The Diabetes UnConference came out of a personal desire to create a safe place for these discussions – and an even more personal desire to push past the superficial connections that are sometimes created (not through anyone’s fault, but the way the Internet works…) online. When we walked out of that room a few weeks ago, were connections made that will take root and inspire others to be more open about living with diabetes and connect in new ways? Time will bear witness.

I know that I’ll be able to talk with greater clarity about what happened and what we are going to do next because of what happened, but for now, the cocoon is still woven tightly around me. I am comforted by that and I’m not ready to let these emotions fly just yet.

 

Stolen Words from Octavio Paz

While I can’t yet talk about it, this aptly describes how I view what occurred…

a crystal willow, a poplar of water,

a tall fountain the wind arches over,

a tree deep-rooted yet dancing still,

a course of a river that turns, moves on,

doubles back, and comes full circle,

forever arriving:

– Octavio Paz, “Sunstone”

1188980_19108234The poem is about an individual’s quest for connection and community and the loneliness that one can experience without it. (If you’ve never read it, be forewarned. It’s 584 lines long, representing the number of days it takes Venus to orbit the sun. It begins and ends with the same stanza above. This monumental work is beautiful and haunting and worth every line.)

The takeaway of the poem and The Diabetes UnConference is simply this:

we need each other. 

Whether it’s at The Diabetes UnConference or in local face-to-face meet-ups or in welcoming online community sites like TuDiabetes.org. We must create these spaces and throw open the doors to those who need to talk, all the while respecting the sanctity of what needs to be discussed

There will be a 2016 Diabetes UnConference.There will continue to be opportunities for more individuals with diabetes (and those who love us) to have heart-to-heart conversations and build new circles that grow, welcoming new and brave souls to share and teach us. I hope that smaller versions of what we began in Vegas will pop up in a local meet-up. I believe it can be done.

What did I learn (although perhaps, I always knew in my heart)?

Our community needs to have sacred spaces and full circles. We have deep roots and we will dance together. And most importantly…

We are forever arriving: