Tag Archives: diabetes

It’s back: #IWishPeopleKnewThatDiabetes

April 20, 2016 – 9:08 am

IWPKTD

Welcome to the second annual #IWishPeopleKnewThatDiabetes Day, brought to you by Kelly Kunik, who would be pleased as punch (made with 100 percent juice) if you would share your thoughts on the subject, using the #IWishPeopleKnewThatDiabetes hashtag. Write, share, and join us for the #IWishPeopleKnewThatDiabetes and #DSMA Twitter chat tonight at 9:00 eastern time here in the USA.

It’s an interesting paradigm: Diabetes is invisible to many, though it certainly is not to those of us living with it. At some point nearly every Person With Diabetes is reluctant or fearful to open up and reveal the challenges that come with managing blood sugar every single minute of every single day for the rest of our lives. Yet, it can be cathartic, rewarding, and yes, overwhelming to actually do that and tell our story to the world.

#IWishPeopleKnewThatDiabetes is not easy. It’s not “set it and forget it”. It’s not a series of rules or directives that will move us instantly to BG nirvana if we follow them all to the letter.

#IWishPeopleKnewThatDiabetes is a lot more involved than that. It’s dealing with insurance and doctor visits. It’s dealing with keeping our insulin warm enough in the winter and cool enough in the summer so it doesn’t go bad. It’s dealing with bad infusion sites, and continuous glucose monitors that can’t work in lockstep with our meters. It’s dealing with the thirst and sluggishness of high glucose, and the hangover feeling of low blood glucose.

#IWishPeopleKnewThatDiabetes means also living with the possibility and the fear of complications. A number of co-morbidities can result from living with this disease, and if we do experience one or more of those, it doesn’t mean that “this happened because we weren’t taking care of ourselves”. And you never have the right to suggest such a thing. Ever.

#IWishPeopleKnewThatDiabetes costs one heckofalotta money. Remember, we have to not only live with diabetes every day the rest of our lives; we have to also pay for the privilege. Prescriptions, durable medical supplies, insulin pumps, CGMs, and enough supplies for unexpected lows. In my country, it amounts to thousands of dollars out of our pocket every single year, for as long as we live.

#IWishPeopleKnewThatDiabetes gets even tougher as you get older. Here in the USA, people who have come to rely on CGM technology to help them avoid dangerous lows must give up their CGM once they reach age 65, or engage in a long appeal process to keep it, because our Medicare program won’t cover it.

#IWishPeopleKnewThatDiabetes needs more voices, and more support for those voices. In the past four years that I’ve been writing in this space, I’ve come across so many brilliant and helpful people that continuously raise the level of discussion and advocacy for those living with and affected by diabetes. But no one person can connect with every person via the information superhighway. So we need more voices, from more perspectives, in more places, to bring diabetes awareness and support to match the need for awareness and support among every segment of our health care systems, economies, and governments.

Your story is important. Share liberally. Thank you for being such an important part of this community.
 

By StephenS | Posted in Events | Also tagged , | Comments (1)

#FFLFC16: A Weekend Well Spent.

April 12, 2016 – 9:08 am

Over the weekend, I was able to attend another gathering where People With Diabetes were able to learn, share, and enjoy the company of one another.

From the team that brings you the Friends for Life conference in Orlando each July, the Falls Church, Virginia version was a welcome weekend spent with a different group than I’m used to hanging out with.

But that’s good, because I like families, I like kids, and I definitely like meeting new people. Over the course of two and a half days, I was also able to get back up to speed on the latest in Artificial Pancreas research from two groups, get firsthand accounts of the amazing development of the Nightscout system, and I was able to take in (and speak with attendees) about advocacy issues including Medicare CGM coverage, our relationship with FDA, #SuspendBidding, and more.

This event was pretty well attended, and the location couldn’t be better. From a purely personal perspective (and this has nothing to do with the content of the conference), the buffet meals were really good. Lots of options, including gluten free, and carb counts on everything.

The content of the sessions, as you might expect, varied depending on whether they were for adults, kids, or parents. The adult sessions included Dr. Korey Hood from Stanford covering diabetes burnout; a guide to applying the glycemic index to what you eat by Gary Scheiner; nearly a full day on diabetes advocacy from the super team of Christel Marchand Aprigliano and Bennet Dunlap; and finding support through social media with Kerri Sparling.

There was also an exhibit space that featured every U.S. pump maker except Medtronic, Roche (and their latest Accu-Chek meter—I’m interested), the Diabetes Patient Advocacy Coalition (with laptops people could use to e-mail their elected officials in Congress and the Senate!), and both the American Diabetes Association and JDRF.

A couple of tidbits from the weekend: we were told that this was the first Children With Diabetes conference that featured more adult attendees with diabetes than kids or families. And, it looks like Jeff Hitchcock and Laura Billetdeaux are looking at options to come back to the Capitol area for another conference very soon. Which I think would be fantastic. It was three years between events in the D.C. area, and that’s too long to wait.

The Great Spousal Unit likes to say that after a diabetes event, I come home more energized, and walking on air for a considerable time afterward. Since she made the trip with me this time, I think she now knows why. I hope she does. Because no matter how often I gather with people who walk the same path I do, it still means a great deal to me to be together with them in the same space.

Thanks to all of the staff and volunteers at Friends for Life Falls Church for being so welcoming, helpful, and informative. And in case you were wondering, I was not given anything to say that. It comes straight from the heart.
 

By StephenS | Posted in Events | Also tagged , | Comments (4)

#SuspendBidding

April 7, 2016 – 9:08 am

I’m not going to sugar-coat this for you, even though this is a diabetes blog.

We’re at the point where this is untenable.

For the past five years, the Centers for Medicare and Medicaid Services (CMS) has been conducting a grand experiment, opening up competitive bidding on a wide range of necessities for People With Diabetes who have Medicare as their primary healthcare partner (hint: that’s 11 million U.S. citizens over the age of 65). They have been told as far back as three years ago by nurses, educators, and patients themselves that competitive bidding endangers the lives of senior citizens with diabetes, but they keep ignoring the warnings.

There’s a new publication in Diabetes Care, the peer-review journal of the American Diabetes Association, that shows that competitive bidding is an abject failure at all levels.

Wait… why is competitive bidding bad, you may ask? Isn’t it better if we get the best price for the products we need?

Let’s answer the second question first, and the first question second: It is imperative for seniors living with diabetes to pay the lowest price possible for the healthcare, devices, and drugs that will help them live the best they can through their golden years. To answer the first question, yes, competitive bidding is very bad, and there is proof it is bad, and that proof is being ignored by CMS, and that must stop.

Let me give you a simple example: I use a BG meter made by Ajax Corporation (not a real BG meter maker—remember, this is an example). It works pretty well, pretty accurate, and I’m nearly out of test strips for my existing meter. But now, Ajax lost out on the latest round of competitive bidding, and I now have to use a meter made by Acme Corporation. That means, as a senior on Medicare, I have to go get a prescription for the new meter, find the new meter and test strips, pay for them, and learn how to use the new meter. Immediately.

What do you think the chances are that 11 million people are going to be able to do that easily?

Let’s face it: they aren’t.

Which means some of them won’t, which means some of them won’t be checking their BGs, which means some of them will wind up in the hospital or a skilled nursing facility with hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), where a best-case scenario is a stay of days in the facility, costing Medicare thousands, maybe hundreds of thousands, more than the continued cost of strips for a meter the patient was comfortable with in the first place. All because of the competitive bidding process.

And that’s only one example. Pissed off yet?

Good. Here’s what you can do: Use the Easy button.
ActNow_Web_Btn_3.23-01
CLICK HERE NOW and go to the Diabetes Patient Advocacy Coalition to help add your voice to the growing #suspendbidding chorus demanding an end to competitive bidding until CMS is called to answer for this destructive practice before a congressional hearing.

I promise you, it will take less than1 minute for you to let your House representative and both your Senators know that the CMS competitive bidding process is dangerous and deadly.

CLICK HERE NOW. I will be Medicare eligible in 11 years. Let’s end this process before I’m eligible in 10.

If you have any questions, please let me know by using the E-mail Stephen link in the upper left corner of this page.

Living with diabetes or not, we… I… don’t want your help with this. I need it.

CLICK HERE NOW.
dpac_infographic_4-1
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (6)

Diabetes By The Numbers: Daniele Hargenrader.

April 1, 2016 – 9:08 am

Daniele Hargenrader is one of the hardest working people I know of in the diabetes community. Both on a personal and a professional level.

She’s a nutritionist, a health coach, a certified professional trainer. She’s an international speaker, and an author too.

Today, Daniele talks about the things that motivated her to lose weight, get fit, and rock her diabetes. She talks about why nutrition is focus number 1. She talks about her book, Unleash Your Inner Diabetes Dominator: How to Use Your Powers of Choice, Self-Love, and Community to Completely Change Your Relationship With Diabetes for the Better. And she talks about her latest project.

Seriously, I don’t know how she does it all, but she does it well.
DBTN

Reference Material – Click below for more information on this topic

Daniele Hargenrader writes blog posts, hosts video chats, teaches online courses, and more through her website:
diabetesdominator.com

Daniele mentions using MyFitnessPal to log her food choices:
myfitnesspal.com

Want to pick up Daniele’s fantastic book? You can find it on Amazon right here:
Daniele’s Book– Unleash Your Inner Diabetes Dominator

By StephenS | Posted in Diabetes By The Numbers | Also tagged , , | Comments (0)

(nearly) Wordless Wednesday: World Health Day/Diabetes.

March 30, 2016 – 9:10 am

Did you know that Thursday, April 7 is World Health Day? World Health Day is the one day each year where the World Health Organization encourages everyone to try to stem the tide on a worldwide health crisis. Guess where the World Health Day focus is this year?

That’s right… it’s diabetes.

Let’s face it: with the rise in the numbers of those diagnosed and the many who remain undiagnosed, making diabetes a focus just makes sense. And I’m completely supportive of the World Health Organization’s efforts to take this on this year. To find out more about WHO’s World Health Day efforts, including some infographics and posters, CLICK HERE.

And how about this? How about, on Thursday, April 7, we do the Blue Fridays thing a day early and wear blue to recognize and support those living with and affected by diabetes? I’m in if you are…
 
 
Recently, the folks at Amino, a relatively new company, asked me (and a couple of others) for some feedback on what living with diabetes is really like. They took our input, added some facts, and came up with a spiffy infographic of their own. Any of the blog names at the bottom look familiar?

From their website:
“Amino aims to connect everyone to the best health care possible. Powered by a comprehensive database that includes nearly every practicing doctor in America and experiences from more than 188 million patients, Amino’s service empowers people to make confident decisions about their health care, starting with the doctors they choose.”

Special thanks to Amino for reaching out. Full disclosure: I was not compensated in any way by Amino for providing my input or sharing it here.
Amino_WHD_diabetes
 

By StephenS | Posted in Wordless Wednesday | Also tagged , , | Comments (0)