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Find an Advocate

ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.

It’s really not very hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.

ADVOCATE POSTS

21th Annual Shooting Stars JDRF Walk to Cure Diabetes Sunday, October 23, 2016 in Newport Beach, CA at The Waffle House

For a contribution of $50 (or MORE!), walkers will receive a VERY COOL Shooting Stars Team T-Shirt while supplies last. Contact Joanne if you are interested in attending the event. joanne@TheSavvyDiabetic.com. To donate on-line, please go to: http://tinyurl.com/z5c2x8e.

What Would YOU do? Your Feedback is NEEDED!

OK, customer service is part of life, of business, of healthcare, of just about everything.  While some organizations make it a priority to deliver the best customer service experiences possible, others not so much. 

Then there is the occasional clinker – a rep who is just blatantly rude or offensive or shows, by attitude and tone of voice, that he/she really just doesn’t care.

We all deal with this and usually, just manage or get another rep for help. 

I had an experience with a diabetes device company’s customer service (CS) department this week that stunned me … actually took my breath away.  I won’t mention the company (for ease of this blog, I’ll call it M) but I’m on the Loop so you can figure it out.  I had bought my M pump used from someone who no longer wanted to use a pump.  It was out of warranty and was barely used and it works just fine. 

I then tried to buy supplies from M, through their order line.  I received a call that they can’t fill the order until the pump is registered … I was transferred to CS … so far, so good.

I gave the rep the pump serial number and he informed me that the pump was not registered.  Well, duh, that’s why I was talking to him.  I was polite and explained that I had gotten the pump used and just wanted to buy supplies.  That’s when the tirade started.  “Where did you get this? Did you steal the pump? Are you in the black market?”  He was getting worked up. 

I said that I thought his tone of voice was getting very accusatory.  He said, “Yes, it is!  You can’t just have […]

Savvy Updates 4.13.2017: Apple and Verily on CGM Initiatives, Insulin is 90

Here’s the latest!

Apple in Secret Effort for Diabetes Treatment, according to the CNBC report, 12 April 2017.  This could be exciting! 
Apple has had a team of biomedical engineers working on a secret initiative to develop non-invasive glucose sensors, originally envisioned by the late Steve Jobs, hoping to be the first to track blood sugar levels accurately without piercing the skin. 
Verily, the life-sciences unit of Alphabet (Google), is working on glucose sensors including a smart contact lens that would measure sugar levels through the eye.
 
CNBC Videos:

Apple is Working on New Diabetes Treatment
Apple has a Secret Team Working on the Holy Grail

 Read more: 

Apple has a secret team working on the holy grail for treating diabetes
What is the smart lens program?
Apple is testing a noninvasive blood glucose monitor

 

 

Insulin is 90 Years Old and Costs More Than Ever … Why? As reported on TheDiabetesSite.com, the patent for insulin was sold to the University of Toronto in the early 1920s, over ninety years ago, for … are you ready? … $1 … yup, ONE DOLLAR!

 

 

 

 

Many would say that these changes have been for the better, toward a safer, more effective administration and reception of the insulin. BUT each change has resulted in the extension of patents — patents that belong to brand-name players in the pharmaceutical industry.
The extension of patents means that, even though insulin for diabetes is over 90 years old, it cannot become a “generic drug.” 

According to HealthSmart “A generic drug is a chemically equivalent, lower-cost version of a brand-name drug, costing 30-80% less! A brand-name drug and its generic version must have the same active ingredient, dosage, safety, strength, usage directions, quality, performance and intended use.”
Thirty to 80 percent lower cost … THAT IS SIGNIFICANT!
Read […]

Savvy in Hollywood: Talking about Advocates

I had another great opportunity to be a T1d cohost on The Bonnie Sher Show … she now calls me her “Roving T1 Co Host”!  And I got to talk about an issue that I feel is extremely important to us T1ds.  (By the way, my section stars at 30 minutes into the broadcast!)

Advocates! 

Identify what you need an advocate to do
How to choose and ask someone to be your advocate
And then how to educate and train your advocate and give him/her tools and lists

We are all taught the word CONTROL when we are first diagnosed.  And many of us avoid situations (such as hospitals) where we have the CONTROL taken away from us.  But we can’t always predict when we might be in that situation (my experiences had nothing to do directly with diabetes, such as appendicitis when I was 3000 miles away from home).  The next best thing to staying away from those situations is BEING PREPARED. 

I’d love to enlist your help and feedback as I develop a workbook and task list to educate your advocates.  I’ve set up a page on my website called Advocate … and an email address: advocate@thesavvydiabetic.com. Please make comments and send me emails on any ideas or needs you might think we could all use.  If you’ve developed a great way of training someone to be your advocate, please share that with me by email. If you have diagrams or checklists or pictures, please let me know if I might share them.

Let’s create something that helps us, our advocates and ultimately, the health care professionals treat us in the best healthful way, to get you home quickly and without undue excitement.

I’m looking forward to your help!  Many […]

Apps, Apps and Apps

I’ve been reading lots lately about medical apps … and I’ve tried a few … and I’m using a few. Perhaps we should take a look at what’s actually going on in the health apps arena.

My questions for you: 

What apps are you using? 
What do you like about them?  What do you dislike? 
What would you like to see in the next gen diabetes apps?

 

A few weeks back, I reported (in Savvy Updates 3.27.2017) on an interview by McKinsey & Company with 2 executives from MySugr, an app designed for diabetes management.  Then I did a DiabetesMine Test Kitchen video review of One Drop, the newest blood glucose meter on the market with a substantial diabetes app to help you manage your health and also feel connected to others in the diabetes community.

Right now, apps just seem to take more of my time and add more tasks to managing diabetes.  But I’m betting that it will get better and easier, with better connectivity, better power options. 

There are so many apps out there that is can be confusing and a bit overwhelming.  But useful.  I use some apps, like MyFitnessPal, sporadically and mostly when I want to really know what my food intake is or if I need to be motivated.  Lately, since I’m running a closed loop, I use Loop, Dexcom mobile app, Clarity , Dario when I’m out and about and use their very handy meter/strips/lancer all-in-one.  I use Nightscout and Tidepool Blip to collect my data from all sources (used to use Glooko and before that, Diasend).  I use Apple Health as well as Fitbit. 

I’m sure, before the day is done, I’ll be hearing about a new app.  Ooops, there you […]

The Savvy Diabetic in the TOP 51 Diabetes Blogs!!!

Thank you, Hard Boiled Body, for placing The Savvy Diabetic on your Top 51 Diabetes Blogs for Lifestyle Tips 2017!  I am SO honored and proud to be recognized among such great blogs!  HardBoiledBody

Here’s what they said:
 
 

The Savvy Diabetic
Joanne Laufer Milo, aka The Savvy Diabetic, is a superstar in the world of Type 1 Diabetes blogging. An author, advocate for the cause and regular talk show guest, this site is a fountain of knowledge in the form of both written and video blogs.
The Savvy Blogger mixes posts and memes from other sources with her own wealth of experience in this subject, regularly updating news and updates surrounding the condition, reports from conferences and recommendations on further reading. Commentary on Medicare features prominently, while posts such as this breakdown of the lingo surrounding insulin pumps should educate and entertain in equal measure.
Be sure to bookmark The Savvy Diabetic to stay up-to-date with the very latest developments on the ever-changing world of this condition, and if you wish to show support, you can even make a purchase from the online shop, from which all proceeds to go toward research for a cure – the printed organizer, in particular, is a revelation.

Savvy Guest: Looping Update by Jessica Ching

I’ve know Jessica for many many years … we go way back and we were about the first T1’s to start on Dexcom STS, first generation.  Jessica went on to work for Dexcom and then Abbott (when they were selling the Navigator CGM).  She’s now a technology consultant based out of Berkeley.  Her comments are excellent and I must tell you, she manages her diabetes with a great deal of technical skill and attention.

 

Jessica’s Take Away after 3 or so months of looping with the RileyLink

The Good:  

 Average has dropped about 5-10 points (not much, but it’s a bit)
 Time spent above 160 reduced by more than half (now around 13% vs used to be 29%).  That is awesome
 Less swings; std deviation was 52 but is now 36.  I think this will improve, even before we take the next step

The Bad:

I spend a lot more time managing diabetes, mainly because RileyLink goes from online to offline throughout the day.  So I have to constantly be checking on it.  If the red circle was there for a while sometimes I manually compensate (I couldn’t agree with her more.  It does require a lot of attention and rebooting and retuning.  But I am reminded that this is still a do-it-yourself project!)
Pump battery only lasts 5-6 days.  I’m using cheap Duracells from Costco.  (Very true … I’m trying to make my AAA battery in my Medtronic 723 last 7 days but just barely.)
Exercise is problematic as my basal manipulation pattern for exercise doesn’t work any more.  My software partner told me he thought it was because my body was accessing and using glucose differently. My goal is to tell Loop up to 4 (?) hrs in advance when […]

Tell Medicare to COVER the OMNIPOD SYSTEM!!!

I received a letter from Pat Sullivan, CEO of Insulet Corporation, makers of Omnipod System, requested that we ALL contact our members of Congress, urging them to contact HHS Secretary Price and the CMS Administrator for their support. 

Please respond TODAY … it’s so easy! It’s a preformatted letter but you can add a personal note.  It will identify your congress folks and autosend.  Then share with your family and friends, Facebook and other social media. 

Let’s MAKE THEM SIT UP AND TAKE NOTICE!!! 

Those who are covered by Medicare and have diabetes should not be denied covered for an FDA approved insulin pump!!!

Omnipod® Insulin Management System Medicare Coverage Action Center

Cassidy Robinson Debuts with Bonnie Sher, Thursday, 6 April 2017

That’s right … TOMORROW!!! 

Cassidy Robinson, amazing and delightful T1d, will be the T1d Co Host on The Bonnie Sher Show tomorrow, on UBN Channel 2, 2pm – 3pm, pst.  (insider tip: Cassidy will be on air around 2:30pm pst and you will also be able to watch it over and over again on YouTube and my website!)!!!

Cassidy will be riding the Bike Beyond Bike Across America in June … yup, just a few short months away.  Is she some hot shot bike rider??? Nope, but she will be when she is done!!! 

Bike Beyond  is a fundraising for Beyond Type 1 Beyond Type 1. 

Cassidy reached her fundraising goal of $4800 within 8 (EIGHT) days … but is now aiming to raise $6800, a number that matches her most recent A1c of 6.8%!  If you want to contribute, here’s the link to Cassidy’s page:  Cassidy Robinson’s Fundraising Page

Tune in tomorrow: The Bonnie Sher Show, Boomer Life, a unique brand of wit and wisdom, airs weekly on Thursday at 2 p.m. (PT) on the Universal Broadcasting Network, Channel 2. To listen live, visit this link and interact with questions and comments on Twitter by following @1bonniesher or the hashtag #BSherRadio.  Or call in: 323-843-2826

Medicare Dexcom G5 CGM Order Requirements

Here’s an update on the latest requirements from Liberty Medical Supplies, after a phone call this morning from a member of the newly expanded and dedicated Medicare CGM department.

 

 

 

To order Dexcom G5 Kit or Receiver:

Fill out an ABN Form (Advance Beneficiary Notice of Noncoverage)  ABN FORM
Current rx for Dexcom G5 CGM from your doctor
Register as a customer with Liberty Medical
NEW: Submit a 31 day log of fingerstick blood tests (minimum 4/day)! You are NOT grandfathered in, even if you have been using CGM! (I KNOW, this is CRAZY!  They only want the readings, not the times!)      liberty log

You have the opportunity to receive a One Touch Ultra meter with 4 vials of test strips, if you need one.

The best way to reach Liberty without a long wait is by calling Dexcom … they can transfer you directly to the special CGM customer service. 

Good luck … I’m busy filling in numbers!

Savvy Goes to Hollywood AGAIN!

Here I go again … to HOLLYWOOD! 
I’ll be on The Bonnie Sher Show TOMORROW, Thursday, 30 March 2017, in the studio with Bonnie, as her T1d Cohost! 
 
 
 
Please tune in at 2pm est: The Bonnie Sher Show – Boomer Life

Universal Broadcast Network, Channel 2
Listen to the show online at www.ubnradio.com
Interact with questions and comments by telephone: 1-323-843-2826
and on Twitter: 21bonniesher or #BSherRadio

Bonnie interviews Betty Kelley of Martha Reeves and the Vandellas at 2pm.
Then, at 2:30pm, we’ll be talking about ADVOCATES:

How do you find advocates?
How do you help them know what you need them to do?

I’ll be talking about this VERY essential topic that can affect our lives at any moment … and what we can do to be prepared. 
AND PLEASE, I need your input! 

What do you think is the most important thing that an advocate needs to know? 

What tools does your advocate need to step in and help you, either at a doctor’s office or in the ER or hospital?

Have any thoughts or suggestions?  Send me an email at ADVOCATE@TheSavvyDiabetic.com