Medicare’s cost-slashing for test strips creates a DOC movement: Strip Safely

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StripSafely is the Diabetes Online Community’s raised voice to protect ourselves from inaccurate blood glucose meters and test strips.

This month Medicare begins offering a limited variety of glucose meters to its beneficiaries. Many of the test strips offered, and manufactured overseas, fall below the FDA approved standard for accuracy. That standard is already too low but don’t get me started.

I’m asking you to join the movement. It’s easy. Write a letter (samples provided) asking the FDA to ensure strip accuracy. If you have diabetes, know someone who does or love someone who does, you know this is a life and death issue.

And while you may think this doesn’t concern you because Medicare is a lifetime away, this may drive US manufacturers of meters and strips out of business. That means: no quality control, innovation, support services, educational programs, and oh yea, accuracy.

It only took me 15 minutes to write my letter. Here are sample letters to make it easy. And here’s mine. As you can see, I took the sample “Short Letter” and just made it personal.

Jeffrey Shuren, MD JD
Director, Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Avenue, WO66-5442,
Silver Spring, MD 20993

July 2, 2013

Dear Dr. Shuren:

I’ve had type 1 diabetes for 41 years and I’m turning 60 next month. Two weeks ago my A1C was 5.5%, yes, normal. How is that possible? I adhere to a healthy diet, exercise every day, and check my blood sugar diligently using a meter and strips recognized among those with the tightest accuracy.

I am writing to you because while I might have said as a teenager, “I’d die if I don’t get that!” I actually could die if I don’t have accurate test strips.

Those of us living with diabetes truly need your help and advocacy. We are facing losing our health due to Medicare’s July 1st cost-slashing program. In only a few years I will be affected by this if nothing changes, and meanwhile US manufacturers may get squeezed out of the market due to price. That means we will lose further quality control and standards, innovation, new product development, service support and educational programs.

At a recent meeting with the Diabetes Technology Society, the FDA acknowledged that many blood test strips do not deliver the accuracy for which they were approved. Further, the FDA has no plan to fix this problem.

I need you to have one. My Aunt needs you to have one, my downstairs neighbor needs you to have one, and hundreds of my friends and acquaintances need you to have one. And my husband, who doesn’t have diabetes, desperately needs you to have one. Otherwise, one day he may not have me.

Blood sugar fluctuates all day, every day both as a consequence of what we do, and by its own nature. I don’t need the quality of test strips to also be uncertain.

Please, I am asking you to, at the least, implement a program of ongoing random sampling of strips to insure that all brands consistently deliver at least the minimal accuracy approved by the FDA.

While I have previously written that the FDA should tighten the ISO standard, how wonderful it would be if Fixing Diabetes Accuracy is one of the things for which the FDA becomes known.

Riva Greenberg

Don’t wait. This is something we can do together. And lives depend on it. Feel free to copy my letter, just fill in your own specifics.

Thank you

Glu, a social media site for type 1 diabetes, launches Nov. 1


With the kickoff of Diabetes Month, November, a new social media site just for people with type 1 diabetes, loved ones and caregivers, goes online –

Actually, it’s been online for some months with a handful of people testing it, but tomorrow it officially opens its doors. I also have a post on Glu about“Flourishing with Diabetes” which you won’t want to miss.

There’s something also revolutionary about Glu. Not only will it offer type 1-specific learning and information, and the typical sharing and support of members, but you will also be invited to respond to Daily Questions and short weekly surveys. 

The information collected goes to Glu’s MotherShip, the T1D (type 1 diabetes) Exchange. The T1D Exchange, will then disseminate the information to its partners: diabetes clinical, research, pharma, educational and outreach organizations, all who are working on better therapies and research toward a cure.

So now, thousands of us who live with type 1 diabetes, have a direct route to get vital and valuable information to the organizations that need it; those who are working to improve our quality of life. In fact, when you go to my post it will ask you two questions, as part of the information gathering.

To learn more about Glu and the T1D Exchange, check out my article on theHuffington Post.

If you have type 1 yourself, or you know someone who does, let them know Glu is open for caring, for sharing, and beginning to change lives.

Social media isn’t just for patients

Support and idea spacePhoto social media

The social media space isn’t just support space for patients – which is incredible enough – but also “idea” space for medical device manufacturers if they’d only look. 

That’s what writer Amy Munice, blogger Amy Tenderich of DiabetesMine’s Design Challenge, her inspired device designers and I think. 

According to Amy Munice, “The foolproof way to get the right mix in social media messaging and pave the path for future patented technology, above all, is to focus on listening…all new product developers tapping into the likes of Twitter, Facebook and LinkedIn and disease-specific niches in the blogosphere at every stage of medical device development, could well be the harbingers of engineering and design school curricula in the not-so-distant future.

To read the full article click here.

Dr. Oz’s SharecareNow picks “Top Ten Diabetes Influencers”


Top Ten Diabetes Influencers

Ten diabetes advocates in the online diabetes community – including yours truly – have been recognized by a new service from Dr. Mehmet Oz and partners called SharecareNow. The company’s mission is to help simplify the search for high-quality online healthcare information. They’ve just released SharecareNow 10 – their list of the top ten people reaching and impacting audiences, from mainstream news sites and personal blogs to community forums and Facebook

I’m honored to be on this list along with many fellow advocates and bloggers whom I know, and also know how hard they work helping to inform, educate and inspire all of us. 

Here’s the list: 

1) Amy Tenderich, DiabetesMine™ 
2) Kerri Sparling, Six Until Me 
3) Kelly Close, Close Concerns 
4) Manny Hernandez, Tu Diabetes / Ask Manny 
5) Leighann Calentine, D-Mom Blog 
6) Riva Greenberg, The Huffington Post 
7) Kelly Kunik, Diabetesaliciousness™ 
8) Elizabeth Woolley, – Type 2 Diabetes / Diabetic Mommy 
9) Kim Vlasnik, Texting My Pancreas / You Can Do This Project 
10) Scott Johnson, Scott’s Diabetes

Diabetes is the first health area SharecareNow is recognizing. Jeff Arnold, chairman and chief architect of Sharecare says in their press release, the diabetes online community has exploded in the past decade, with people relying on these top influencers for credible and reliable information to help them effectively manage their disease, while also finding support through their online relationships. SharecareNow hopes to enable these key influencers and medical professionals to connect and expand the conversation, with the goal of reducing disease rates and improving the health of millions of people.”  

I don’t yet know how SharecareNow intends to do that, but it’s a good goal and I’m curious. If SharecareNow can help carry what we all do further, that’s a win/win/win: for us, for them and mostly for patients.

Along with Mr. Arnold and Dr. Oz, Oprah’s Harpo Studios is a partner. Of course I always did want to be a guest on Oprah, somehow I thought I’d be sitting in a couch in Chicago instead of my computer!

PatientsLikeMe isn’t like any other social media site


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If you don’t know them, you should,PatientsLikeMe. Unlike most social media sites, this one isn’t so much about “chatting” with patients like you as much as learning the real-life health experiences of others by seeing shared treatment plans, meds and symptoms. 

Last week PatientsLikeMe expanded its platform and, while diabetes wasn’t previously represented, now anyone with any condition can join. The site is free and 5 years in the social media space, has almost 100,000 members and represents 500 conditions.

What’s the benefit to joining? In addition to feeling less alone, it’s seeing how others are treating your same condition, how they’re doing and learning what does and does not work for others.

PatientsLikeMe was founded by three MIT engineers, brothers Benjamin and James Heywood and friend Jeff Cole after Stephen Heywood, brother and friend, was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. As the founders describe it, we believe we have a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

Surprisingly, or maybe not so, its members, who are very open in what they post on the site, revealed in apoll conducted by PatientsLikeMe  that 29% have withheld certain health information from their doctor for fear of being lectured or made to feel bad. 47% have chosen not to share certain health information with their employer for fear of losing their job or being passed over for promotion, and 14% have withheld information from insurance companies for fear of not having a procedure covered.

It is the hope of its founders that PatientsLikeMe will help patients help themselves by sharing their real-world health experiences in a world where patients are obviously afraid to share certain things with their health care providers.


The diabetes blog-o-sphere keeps growing

Ann Gann a newbie blogger


 I think I once checked and there must be over 1,000 people blogging about diabetes. Woohoo! I began to notice, literally lift up my head from my computer screen, back in May when Karen at Bittersweet put out a call to bloggers to join for a synchronized week of blogging [yes, something like synchronized swimming ;-)] and more than 150 answered the call.

First, here’s to all of us who do this relentless thing we call blogging. Second, let me say how grateful I am that you visit. If not for you, I wouldn’t be here, and this is the place I feel the full freedom to write pretty much whatever comes into my head, and heart.

Third, I’d like to introduce you to a friend of mine who began blogging a few months ago over at DiabetesSisters, Ann Gann. Ann and I have a lot in common and also not so much. That’s why you might want to give her blog a read. Like me, Ann is a peer-mentor and goes around the country giving educational talks to fellow patients. Unlike me, she has type 2 diabetes, is a grandma, lives in a small town, battles her weight and wears a pump. She’s a calm voice in an often stormy sea.

Ann has also been running a diabetes cable TV program in her township of Anderson County, Tennessee bringing county diabetes educators, dietitians school health coordinators and other local resources together to help the greater population of two neighboring towns. In a matter of weeks she took on being the producer, host, scriptwriter, project manager and coffee-bearer. Ann thinks she doesn’t do anything special, but I think a sixty-something year old retired school-teacher traversing the country to educate others, producing a TV show and writing a blog are kinda special.

I encourage you every once in a while, if you don’t already, to take a spin around the blog-o-sphere. Everyone brings something else to the party. Here’s Bitter-Sweet’s list of bloggers captured that amazing week we all raised our voices. You’ll also find a chorus of voices at alltop.

Then come on back ya’ll, as Ann would say, and we’ll carry on again.

Orlando, a hotbed of diabetes activity


It’s not just the temperature in Orlando that makes it a hotbed of diabetes activity these two weeks, but the enormity of activities going on. 

The American Diabetes Association’s (ADA) 70th annual scientific conference has just drawn to a close. Roche just held its second social summit and Children With Diabetes (CWD) begins today. 

Amy Tenderich over at DiabetesMine has been following and reporting on some of the ADA highlights, start here with opening day and see the next few posts, as is Kelly Close over at CloseConcerns, look down the left-hand column. 

I attended Roche’s social summit where they invited 37 type 1 and type 2 diabetes bloggers and broadcasters to a day of exchanging ideas about meter accuracy, best practices and an open dialog between us and representatives of  the American Diabetes Association and the American Association of Diabetes Educators

These conversations drew fire, well we are a feisty group, about how the patient seems all but lost amid their constituencies, but the ADA was extremely open about the need and desire to turn their battleship org around to be more representative and serving of patients’ needs, including type 1s – and create more transparency. They also obviously took this seriously sending six representatives including David Kendall, their Chief Scientific & Medical Officer. Kendall talked about the ADA’s “Stop Diabetes” campaign which is one of their first steps in being more patient-centric. 

Unfortunately, the conversation with the AADE was less successful. To be fair, many of us felt it was taking place with the wrong organizational person. She seemed unable to put her finger on our concerns – MAINLY the fact that diabetes educators are a dying breed while patients are an epidemic and need them. 

There are only 15,000 educators nationwide, relatively poorly paid and many suffer burn-out and leave the profession. On top of that, it’s hard to become an educator. There’s no direct route, and, a big catch-22. You need to have 1,000 hours working as a diabetes educator with patients before you can sit for an exam to become certified, but how do you get hired as an educator with no experience? After ricocheting these thoughts around we also voiced that we would like to see the organization advocate to improve the track to become an educator. An interesting point was also raised by my fellow bloggers – why not create a track where patient-experts can also be educators in some recognized fashion?  

In the end, we offered our assistance to help both organizations in any way we can. Specifically with the AADE to link their professional members to more social media. While that idea was warmly received and seen as a benefit to CDEs, allowing them to hook their patients up with us, I hope the AADE also realizes that CDEs can benefit tapping into social media to get inside patients’ heads, and hearts, and follow the trends and news we report on.  

I am impressed by Roche. With their genuineness, commitment and desire to have an open forum with we, who have an open channel to you. And, yes, while we can assume all this will benefit Roche’s sales and marketing, I believe they hope just as much that it will benefit us in getting products we need and want. 

At the 2009 social summit Roche put their toe in the water wanting to learn from us how to enter social media as a “good citizen.” This year’s meeting was heavily weighted on what they believed would be of value to us. Either way you slant it, a pharma better understanding the experience of living with diabetes and doing something with that knowledge can only benefit all concerned. 

To this end, Lisa Huse, Roche Director of Strategic Initiatives, opened the meeting with a recap of the four initiatives Roche has enacted based on what they heard from us last year:

1) “Keep it real” – display the real experience of diabetes, the real blood sugar numbers we get and teach patients what to do with them. I think I heard there’s actually a TV commercial where someone shows a 273 mg/dl on their meter, yea! Then again, I could have been dreaming.

2) Address costs of diabetes – through Accu-check there’s now a 15% prescription discount card and Patient Assistance Program.

3) Advocate for the diabetes community – through their Diabetes Care Project. A coalition of like-minded organizations improving care for those living with diabetes.

4) Help the diabetes community amplify its voice – clearly evident with our exchange with the ADA and AADE. 

Lisa also told us that during this past year of following our blogs and having her ear on the ground with us, she’s come to understand diabetes much more than her first 11 years with the company. As the meeting came to a close I wondered why more companies don’t spend more time, money and attention listening to, and getting to know, their end users. It can only be a win-win.

Personally, for us bloggers in our virtual world, it’s wonderful to get together, to shake a hand, play ping-pong (hope the table’s back next year), give and receive a hug and say to each other, as we hope we say to you, you are not alone

By the way, if you blow up the photo, and notice I’m wearing a lovely blue boot, it’s the result of a freakish accident. Don’t worry, five or so more weeks in my lovely footwear and all will be well. (Thus the hope the ping-pong table reappears next year.)

In full disclosure all expenses were paid for by Roche for this meeting.

New Facebook game creates a healthier you

Leave it to Manny Hernandez, founder of tudiabetes and estudiabetes, to come up with a Facebook game to help people with diabetes improve their eating and fitness habits. And the gem is, while you’re learning and doing, your ‘friends’ are helping you through it!

The game is called HealthSeeker and was launched June 14th with Joslin Diabetes Center collaborating on content and the sponsorship of Boehringer Ingelheim. Already, there are more than one thousand players.

How it works is you enlist your Facebook ‘friends’ to be your support circle and ravers as you take action steps that help you meet your healthy lifestyle goals. You’ll track your progress and you can share your game results via Facebook status updates and send them out to your Twitter followers.


As Manny, who has been living with diabetes since 2002 says, “I cannot overstate what a source of support, information and inspiration social networking tools like this can be for someone living with a chronic condition like diabetes.”

HealthSeeker™ provides simple action step suggestions and rewards your success through achievement badges and experience points you earn, kudos your friends can send you and comments they can leave on your Fridge door. (Your game Fridge door, that is!)

While your computer is home base, getting away from your computer is where the action happens – in the supermarket, in your kitchen, on the basketball court, in the pool. Then you come back and share your results.

The game is set up so that you choose “Missions” (healthy actions) as in the lingo of the old TV show, Mission Impossible – “Your mission if you choose to accept it….” 

These missions are the stepladder to achieving your goals. As you complete your mission, you move up in the game and get access to more and more detailed action steps where you will need to sharpen your healthy living-chops. For example, if a mission on Level 1 suggests you eat a certain kind of food once a week, later on you will have to do it twice or three times per week – and that’s the beginning of building new habits.

Manny has made going after health fun to give us all a helping hand to improve our diabetes management, and our life. Further, the fun of playing the game with hundreds of others, scoring yourself, seeing yourself gain more points and sharing your results, may be just the motivation you need to now get in the game. 

So get online and then get out on the field! There’s nothing holding you back now but you.

Way to go Manny!

Vancouver-based social game development group, Ayogo Games, Inc. developed the game code.

A strong chorus of voices, amid others, in the diabetes community

Screen Shot 2015-02-08 at 12.17.32 PMIt is now a few days since I’ve returned from the Roche Diabetes Care Social Summit and my inbox has been flooded with daily bursts from enthusiastic returning bloggers. There’s the sharing of all our blog posts as almost 29 people blogged about the conference, of course. And there’s everyone’s vote winging back and forth on the T-shirt in the works that Chris immediately went to work on to commemorate, I think not so much the working summit, but all of us meeting. 

I’ve been flickered, tweeted, googled and just learned what (#) means. I used to think it stood for “number” but apparently I have been sleeping through the past several nanoseconds. It’s a “hashtag,” a way to combine tweets on the same topic. But you knew that, didn’t you?

This email below came in today from one of my fellow bloggers at the summit and I had to smile reading it as it reminded me that while for a few hours we were heralded as the Diabetes “A” Team, we are all only figuring it out ourselves as we go along, every day, day by day.

A quick note to those of you on the bus from the (Roche) factory to the airport. I didn’t realize it at the time, but I was having blood sugar issues on the ride. All I remember was a lot of talking and laughing. By the time I got to the gate, I was confused and didn’t know where I was. The next thing I knew, I was lying on the floor staring up at a group of airport employees, who trying to figure out “who is this crazy man, and why is he sleeping on my floor?” (I’m sure they thought I was drunk) After I muttered the word “diiiaaabetiiic”, a nice lady from behind the counter gave me some OJ. When I checked my blood, I thought my meter was malfunctioning. It read 38. I checked again, and my hypo event was confirmed. So…if I displayed any anti-social behavior on the bus, please forgive me.”

For those of you who’d like to read more accounts of this unprecedented event that Roche created here are a few of the many:

My Spin on the Roche/Diabetes Social Media Summit

Wait, You Wanted Pictures??

Roche Hosts Diabetes Care Social Media Summit – A Meeting of the Minds

Roche Diabetes Social Media Summit: My Turn

Diabetes Social Media Summit: my thoughts

As you’ll notice we all represent a wide range of personalities, interests, opinions, activism, but with one central tenant: We all share living with diabetes in an attempt to help others and also help ourselves. Below my fellow bloggers’ photo are all their web blogs.


  1. That would be me
  2. Ginger Vieira
  3. Kelly Kunik
  4. Fran Carpentier
  5. Calpumper
  6. Kitty Castellini
  7. Sandra Miller
  8. Christel Marchand
  9. David Edelman
  10. Brandy Barnes
  11. Bennet Dunlap
  12. Lee Ann Thill
  13. Allison Blass
  14. Gina Capone
  15. Jeff Hitchcock
  16. Kerri Morrone
  17. Manny Hernandez
  18. Chris Bishop
  19. Amy Tenderich
  20. Kelly Close
  21. Christopher Thomas
  22. Scott King
  23. Bernard Farrell
  24. Scott Strumello
  25. George Simmons
  26. Scott Johnson
  27. William Lee Dubois
  28. David Mendosa
  29. Charlie Cherry

(A special thanks to Sandra Miller for typing up this list.)


Diabetes dating in Indiana with Roche

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I just returned from Indianapolis late last night. After an almost harrowing touchdown, the end result of a storm that battered New York City all afternoon and evening, I was returning from an unprecedented event:  a major dialogue between giant diabetes manufacturer, Roche, and 29 diabetes bloggers. Roche, the leader in glucose testing through their brand, Accu-chek, and testing strips, invited us to their Corporate Headquarters to see how to better use we bloggers to get vital learning and information to more patients, those who are online and those who aren’t. 

Like a first date, we were all on our best behavior at the evening reception cocktail party and dinner. While we bloggers were impressive in number it seemed there were as many Roche executives present; each side felt confidently relaxed. The next day we were facilitated by Amy Tenderich of DiabetesMine (a few more photos) and Manny Hernandez ofTuDiabetes to explore how to widen our voice and reach. Some interesting ideas emerged:

– A go-to diabetes web site with a source list for all things diabetes, including blogs categorized by search-need ie: racial identity, young women, parents. 

– A national call to action on Diabetes Day, November 14th, like, “Today I will test three times.”

– A collective list of diabetes blogs to be included in the resource packet typically handed to new patients in hospitals and doctor offices

– A diabetes czar in the Whitehouse 

– Training health care providers to work with patients to empower them to take more responsibility as their own care givers

A significant working session profered what pharmas MUST NOT Do when using social media, the 3 s’s: Spam, Selling and Self-promotion and what they MUST DO, the 2 e’s: Earning trust and Educating. 

Other comments to note were of the 27 type 1s in this group, we all felt ads that show meters with perfect people and perfect blood sugar numbers like 101 and 104 sooooo put us off. “Get real” was the day’s battle cry. One blogger offered, “Today I woke up at 301 and felt crummy! But my meter let me correct and get to work on time.”

Mid-afternoon we were treated to a manufacturing tour and got to see just how those little test strips get made and boxed, and once I got over wearing the old ‘Roseanne’ hairnet helmet, I enjoyed it. I was also touched by the people on the manufacturing floor who have what look like grinding automated jobs and yet smiled and waved to us like they were greeting family members.

As our date drew to a close, we’re not exactly sure if Roche will call again. They did get sprayed with some heavy artillary over the high cost of test strips and why profits seem to come at the cost of many uninsured patients’ health. We wanted to know why does it take so long for new products to come to market? And the big question: Why are meters allowed to be up to 20% inaccurate? It didn’t help that Roche’s Senior Marketing Manager was not at liberty to answer these questions due to FDA regulatory policies. 

Overall, I believe the meeting was successful because it began a conversation and helped put a face on big corporate for us and internet voices for them. And I do believe this was an earnest attempt to provide better service to their tapped and untapped customers, and yes, profit from that. But then I don’t see the two as mutually exclusive. And so I commend the Roche executives we met for braving internal hurdles I can only assume were there, and I hope more companies will pick up the gauntlet and see the value of tapping into this, and similar, very smart networks of professional patients on the ground.