Riva is finally doing what she set out to do in high school – writing her observations of life and human behavior - little did she know then that diabetes would be her muse. Riva has had type 1 since 18 and is the author of “50 Diabetes Myths That Can Ruin Your Life: and the 50 Diabetes Truths That Can Save It” and “The ABCs Of Loving Yourself With Diabetes.” Read full bio

Glu Accelerates Diabetes Sharing, Online and Off

MyGlu.org (Glu), an online community for people living with and touched by Type 1 diabetes, launches Nov. 1, coinciding with the kickoff of National Diabetes Month.

Glu also launches an innovation in the use of social media. Now a social media site is not just a place to come together and share our stories and support, but a means to help accelerate better treatments, therapies and research for a disease.

2012-10-29-ScreenShot20121029at11.05.20AM.png
(CEO Dana Ball at the monitor, photo by Riva Greenberg 2012)

Glu is the social community arm of the T1D (Type 1 diabetes) Exchange. The T1D Exchange is a non-profit organization dedicated to improving life for those living with Type 1 diabetes. It aims to accelerate better treatments, therapies and research for Type 1 diabetes through a vital network of consumers, clinicians, researchers, pharmaceutical, device, education and outreach organizations all working together. The T1D Exchange, including Glu, was created through the generous funding of The Leona M. and Harry B. Helmsley Charitable Trust.

Both the T1D Exchange and Glu are under CEO Dana Ball, a long-time patient advocate and non-profit champion, who helped advance education, treatment and cure advocacy work in HIV/AIDs.

I met with Ball in August, and as he unveiled to me Glu and the T1D Exchange, I felt perhaps for the first time since I got Type 1 diabetes 40 years ago that something is really going to happen to make my life significantly better.

Simply, Ball has put together a social and business innovation in information sourcing and sharing in Type 1 diabetes. He has linked the arms and sped the transfer of data and research among diabetes-related organizations. Plus, this is all the more remarkable in a field that’s highly fragmented.

In addition to its network partners, the T1D Exchange also partners with nearly 70 clinics across the country for its Clinic Registry and Biorepository. As such, the Exchange elicits information from more than 26,000 people living with Type 1 diabetes that is critical to its partners’ research and development.

Gathering information from so many thousands of respondents to seed targeted needs, this unique collaboration promises to collapse cycle time toward better treatments, therapies and research toward a cure.

Through Glu, people living with Type 1 diabetes and loved ones have an online site targeted to their specific needs, and those who chose can participate in Glu’s daily questions, discussions, and periodic surveys, adding to the T1D Exchange’s data collection. Glu members will also be provided with the learning gathered from site participation, as well as data collected from the Exchange’s Clinic Registry and Biorepository partners.

Ball says, “It’s all about the patient. The T1D Exchange, Glu, what we’re doing all starts, is centered around, and ends with the patient.” Another innovation.

Joyce Lee, pediatric endocrinologist and director of research for Glu, says each month the community will highlight information and education around a specific theme of interest, and she hopes “not only will Glu be a social fabric of support for patients, but also help unite patients and health care professionals … I know for myself,” Lee said, “better understanding the community members will make me a better clinician.”

For me, Glu advances the power of, and what’s possible from, social media. Now we have the opportunity to directly give, in large numbers, in warp speed, what those who are doing the research, creating better treatments and designing new tools, need to improve our lives. While Ball admits the cure is still a distant goal, the T1D Exchange creates the means to bring us closer, faster.

I left my meeting with Ball invigorated and hopeful by both how grand his vision is, and how small. As small as caring enough to create a brand identity, T1D (Type 1 diabetes), for all of us who live with this all but invisible, potentially-devastating disease.

Originally published on Huffington Post.

No comments yet

Elliott Yamin Is Jammin’ for Diabetes and the Big Blue Test

Whether you have diabetes or not, this year you can join those who do and be part of the “Big Blue Test.” I know of no other cause where in 14 minutes you can get life-saving diabetes medicine and supplies to people around the world — many of whom will die without them.

By doing any activity of your choice, for 14 minutes, and recording your activity, Roche Diabetes Care (makers of ACCU-CHECK® products and services) will make a $5 donation to the Diabetes Hands Foundation (DHF), who will then award the monies to seven global humanitarian diabetes organizations.

There’s also a second benefit to doing the Big Blue Test: You actually see the amazing power of exercise to lower your blood sugar. I’ve done this test twice before and just 14 minutes of walking lowers my blood sugar on average 18 points!

This year the Big Blue Test’s video call to action features one of the most popular talents from TV’sAmerican Idol, Elliott Yamin. Yamin was diagnosed with Type 1 diabetes at 16 years old.

YouTube Preview Image

Mike Lawson, DHF’s Head of Experience, says, “We couldn’t be more thrilled that Elliott Yamin is carrying our message, and that again this year, everyone in the video either has, or has been touched by, diabetes.”

Now in its fourth year of this grassroots movement, to get people with diabetes to see the value of exercise and get life-saving supplies to those in need, the DHF has broadened the field. For the first time people without diabetes can participate in the Big Blue Test as a show of support for loved ones and also to help increase the donation. If 20,000 people participate this year, Roche will increase its donation to a full $100,000.

Here’s how to do The Big Blue Test. If you have diabetes:

1) Test your blood sugar.
2) Do 14-20 minutes of activity.
3) Test your blood sugar again and record your results at BigBlueTest.org .

If you don’t have diabetes, do 14-20 minutes of activity and record your activity at BigBlueTest.org.

Also, you can participate as many times as you want, and each test counts toward a donation.

If for no other reason than doing a good deed, I encourage you to do the Big Blue Test. But there is another reason — seeing the startling benefit of activity to lower your blood sugar.

For those who’ve done the Big Blue Test in previous years, Manny Hernandez, president of the DHF, says they’ve seen their blood sugar decrease on average 20 percent!

“Some realize,” says Hernandez, “for the very first time just how effective exercise is for managing blood sugar.” Another good reason not to waste a moment. 

You have between now and Nov. 14, World Diabetes Day, to participate, but why wait? Your body — and thousands of people with diabetes who will receive the supplies, treatments and education they need to live, because you took a few minutes today to move your body — will thank you.

No comments yet

Glucose Meter Accuracy Counts More — and Less — Than You Think

Recently I wrote a post asking, “Why Can’t Meters Tell Me My Blood Sugar?” It was prompted by checking my blood sugar on two different meters from two different companies, and to my surprise discovering the results were quite dissimilar.

I then did a home trial several times and each time saw different numbers pop up on different meters. I set off to find out why. I discovered why. I also discovered why meter accuracy is both more, and less, critical than we think.

2012-08-28-MyMeters.png
Four different meters ranged from 121 mg/dl (6.7 mmol/l) to 158 mg/dl (8.7 mmol/l) in one test taken at the same time. (Ignore dates on meters, I rarely use the date function.)

Compared to a Standard Lab Test

Home glucose meters can’t compare to the standard lab test (“reference standard”) they’re measured against. Hospitals are contained environments where elements like temperature, humidity and altitude are controlled. Trained technicians run the test on a very costly machine that is regularly maintained and calibrated several times a day. Lab tests also analyze a larger blood sample for 60 seconds or more.

Home meters have to rely mostly on their test strips for accuracy. Strips are easily affected by variation in manufacturing, temperature, climate, altitude and freshness (age). Also, substances in our blood like medication (something as simple as Tylenol), and/or our own red blood cells can interfere with our glucose reading.

As for why different meters give different results, it’s largely due to the meter’s calibration and coding and the strips’ design that causes a unique interplay between strip and meter.

The last wild card in our glucose reading is us, the user. Do you handle the strips properly? For instance, not use the one that just ricocheted off the honey-glazed chicken? Did you wash your hands so the apple you ate an hour ago isn’t picked up by the strip? Are you using strips that expired last year?

So now you know why your home meter is not as precise as the reference standard. But that’s only part of the story.

The Waterfall Effect

There is something else at play and it’s this. Your blood sugar reading is only one of several factors from which we make decisions to keep our blood sugar in range. For the estimated 7.2 million people in the U.S.who have diabetes and use insulin, not to mention the tens of millions around the world, Dr. Barry Ginsberg, of Diabetes Technology Consultants, says meter accuracy plays only a small role in the overall accuracy of insulin dosing. Carbohydrate counting and insulin absorption are the main contributors to accurate dosing, and there are enormous errors in both.

Dr. Ginsberg told me the average error is only 8 percent if a meter meets the ISO standard (95 percent of the time it’s within plus or minus 20 percent of a standard lab test at glucose concentrations equal to or above 75 mg/dl, and within 15 mg/dl at values less than 75 mg/dl).

Comparatively, the average error in carb counting is about 20 percent and in insulin absorption about 25 percent. Hence, a lot of inaccuracy to base my dosing on. Yet, notice meter accuracy is much less impactful to my dosing accuracy.

The solution, for now, is to make each of these three factors more accurate. So if we increase meter accuracy to within plus/minus 15 percent — the new reference standard now pending FDA approva — and I brush up on my carbohydrate counting and get a little better at calculating my insulin dose, I’ll increase my chances of getting my insulin dose more accurate more of the time.

So, do I want my meter to be more accurate? Absolutely. Dr. Ginsberg says at the current standard people with Type 1 diabetes are missing 15 percent of hypoglycemic events (low blood sugar below 70 mg/dl (3.8 mmol/l). Within 15 percent accuracy we’ll still miss 10 percent of hypos. We need to get meters to within 10 percent accuracy to miss no more than 1 percent of hypoglycemic events.

Meters are moving toward greater accuracy. Some are already satisfying the new proposed guideline of plus/minus 15 percent, like the recently-released Nano from Roche and Bayer’s Contour next EZ. There are likely more; these are the ones I know. Also, industry insiders say Agamatrix meters and strips, packaged under Medicare’s Liberty Medical, Kroger and Target brands, and Sanofi’s new iBGStar, are closer to within 10 percent of a standard lab test.

But I’m not just concerned about catching hypos. I want to be able to keep my blood sugar in my target range as much as possible to avoid long-term complications.

So in addition to improving meters’ accuracy, I want the food industry to tighten their accuracy on nutrition labels. I want dietitians to explain how foods impact our blood sugar, like how fat in a meal slows down blood sugar’s rise. I want health care providers to provide better instruction on using insulin, like where on your body you inject affects the amount, and rate of, insulin absorption, and that being sick or stressed usually raises blood sugar.

And I want those who blame patients for not having the blood sugar numbers you think are simple arithmetic to realize that they’re not.

In the meantime there are a few things we patients can do to increase our dosing accuracy: wash our hands, brush up on our carbohydrate counting, learn more about insulin dosing and choose our meters wisely.

Note: I want to thank those who generously shared their time and information with me: Dr. Barry Ginsberg, President, Diabetes Technology Consultants; Dr. Alan Cariski, VP, Worldwide Medical Affairs, and Medical Safety Officer at LifeScan; Dr. Holly Schachner, Pediatric Endocrinologist and Medical Affairs Officer at Bayer Care; Dr. Andreas Stuhr, Medical Director North America at Roche Diagnostics; Dr. Sridhar Iyengar, Director and CTO at Agamatrix and Shawna Gvazdauskas, Vice President, Head of Devices, US Diabetes at Sanofi. I want also to express my respect and admiration for those who are working to improve meter accuracy.

This article was written on my own initiative, I was not asked to write it nor was I compensated by anyone or any company.

Originally published on Huffington Post.

3 comments

Saved by My Insulin Cap

I have what’s recently grown into a nasty habit. First thing in the morning, as soon as I wake up — usually around 6:30 a.m. or 7 a.m. — I walk into my kitchen. No, that’s not the nasty part.

I stand glazed over my glucose meter for my first reading of the day. Then I almost always take one unit of my rapid acting insulin to keep my blood sugar from rising like Mt. Vesuvius before I get to eat my breakfast.

Then I take my thyroid pill and pull my long-acting insulin pen out of the cup where I keep it, so I’ll see it and take it at 9 a.m. each morning.

Sorry, that’s not the nasty habit either — those are the good habits. But recently, I’ve been so focused on getting to my computer as soon as those morning bits are over — since I’m finishing writing my third diabetes book and have a timeline of it being published by late summer — that everything else goes to hell for the next few hours. The worst being I am forgetting to take my 9 a.m. long-acting insulin injection.

True, I no longer watch the morning news, because even though it’s on, I’m at my computer not paying attention. In fact, it was a shock when I learned way after the fact that Tom Cruise and Katie Holmes broke up! I do make my breakfast and manage to eat it, although sometimes a few hours later I’m not sure that I did.

But the really nasty bit, as I alluded to before, is more than once I have forgotten to take my 24-hour, long-acting, once-a-day insulin shot at 9 a.m. Me, who is fully committed to having my best health. Me, who is Virgo-born and inherently disciplined. Me, whose middle name is “organization” — well, my parents didn’t give me a middle name. Me, who eschews the 30,000-foot view because I love the details. Yes, the same me who has thrived on forsaking spontaneity for order.

When twice I forgot to take my long-acting insulin shot earlier this summer, I was fortunate enough to catch my mistake by 10:30 a.m. I immediately reasoned with myself that no real harm was done. After all, when I travel internationally I spend the first three days guessing when to take my long-acting insulin.

Yet, yesterday I didn’t catch my error until 5 p.m.! The first clue that I’d missed my shot I ignored: My blood sugar reading before lunch was higher than usual, even after my daily sweat-soaked one-hour walk after my same everyday breakfast. Then my blood sugar reading two hours after my usual salad and grilled chicken lunch (beginning to see the regimentation?!) was atypically high.

As that seemed worth following, I checked my blood sugar again at 5 p.m., and it was still high. Now at least I had the smarts to register a perplexed and suspicious look on my face, a scrunch I know I wore while I picked the long-acting insulin pen out of its cup and looked at its cap.

I happen to have a cap with a digital timer that shows how many hours it’s been since I took my last shot. It stared back at me with a “32:08.” I was stunned. I had never seen a number like that before.

Had I really entirely forgotten to take my shot this morning? I looked long and hard at the numbers, and that was a very long half minute I stared at the numbers. I wanted to make sure I couldn’t have misread it as 32 minutes, which of course made no sense because that would have meant I’d taken my 9 a.m. shot a half hour ago. Had I done that certainly I would have remembered this entire incident. 

No, that “32:08″ when I counted back from 5 p.m. meant the last time I had taken that cap off the pen to take my shot had been 32 hours ago — 9 a.m. yesterday morning.

Incredulous, but resourceful, I told myself this was no worse (provided it doesn’t happen again) than having just flown to Japan and having no idea how to dose for the day. Then I took my shot: two-thirds of my usual dose, figuring I only had two-thirds of a day left to cover, and returned to my manuscript.

This is all to say, 1) sometimes bad things happen to good people 2) don’t beat yourself up, just remedy the situation and try to do a little better next time 3) technology is producing some great new diabetes devices 4) yes I’m writing a new book called Diabetes Dos & How-Tos, which you should look for early fall. It’s everything you need to do to live healthfully with diabetes — and recommendations how to do them, and 5) if you want a cap on your insulin pen that will tell you when you’ve messed up, go to Timesulin.com. (Currently pens are available in Europe and on the web site in Euro. If you have a friend in Europe, or a Swiss bank account, lucky you. Otherwise stay tuned for the projected U.S. launch next year.)

Note: While I was given a Timesulin insulin cap at the IDF World Congress in Dubai, in full disclosure I have no commercial ties with Timesulin, nor have I been asked to write this, or any other article, for them.

Originally published on Huffington Post.

No comments yet

Bob Marley’s Nephew Is On a Diabetes Mission

The first thing to know about Charles Mattocks is that his passion for educating people with diabetes is fierce; it buzzes at me through the phone line. Like his famous reggae musician uncle Bob Marley, he is championing social change — in diabetes. His ammunition? A bus, a film, healthy, affordable food and unbounded passion.

Bob Marley's Nephew Charles Mattocks

Charles Mattocks is the 17th in my series on diabetes change leaders.

RG: You say not knowing what diabetes was as a black man in his late 30s is a sad situation in America. Why is that?

Charles Mattocks: Because diabetes is so prevalent among blacks and Hispanics, and we don’t know what it can do to us. I thought my symptoms were signs of a urinary tract or kidney infection even though I grew up with an aunt who had diabetes.

We just call it “having sugar” and dismiss it. I worked with rap star Shorty Low, who was hospitalized for diabetes twice. I asked him “Shorty, are you worried about your diabetes?” He said no. The fact that he’s not worried alarms me.

A lot of people are living like that, especially in minority communities. You don’t see your diet causing your diabetes, your high cholesterol and bad blood pressure. You don’t see the effects of this disease until it’s too late. You know,you can eat chocolate cake and you’re not going to die — well, not that day.

RG: When you were diagnosed with Type 2 diabetes a little more than a year ago, you were making a name for yourself as “The Poor Chef” helping people cook healthy on a budget. What’s different now that you have diabetes?

CM: I learned I didn’t know what healthy was. I look back now at a piece I did on The “Today” Show with Al Roker. I put sugar, beer and bread in the dish I was making and thought that was healthy. I thought drinking juice was better than soda. Now I’m a vegetarian. I don’t eat sugar or starchy carbs and I try to leave the salt on the table.

RG: Is it realistic to expect others to eat like that?

CM: No, but they can do what I’m teaching. Make simple meals and eat more fruit and salads. People think you have to eat cardboard. It’s not true, just take some greens, chickpeas, tomatoes, and onions, toss, and make an olive oil and vinegar dressing. That’s a tasty dish. It’s about adding a lot of flavors and spices.

I also helped develop a premium chocolate bar so people can have something sweet and healthy. The Charles Bar — it’s sugar free, gluten free and low in carbs.

RG: You do cooking demonstrations on TV and throughout small towns. You’re equipping a diabetes bus to cross the country checking people’s blood sugar at sporting events, schools, malls and churches. What drives you?

CM: I’m the nephew of the legendary Bob Marley. He was about social change and I always wanted to do something special. When I was doing “The Poor Chef” I thought I was really helping people. Until I got diabetes.

I want to open peoples’ eyes to what this disease can do. I want companies to do more to help. Our bus is committed to testing 500,000 people in the next two years.

I want to change some injustices too. Pharmaceutical companies take in billions of dollars. I think they should be held accountable for giving back and educating people like tobacco companies had to change the information on a cigarette pack. If people aren’t taking their meds or testing their blood sugar, and learn how important it is, pharmas will make even more money.

RG: Where does the money come from now that funds your work?

CM: We do deals with some great companies that believe in us, or they take ads out on our website. We’ve also had some small contributions. We’re borrowing from Peter to pay Paul. But we keep working hoping to get more money to keep going.

RG: What surprises you as you travel the country talking to people?

CM: That there’s no “smoking gun” but ourselves. A lot of people are trying and taking steps every day to be responsible for their health but I’m concerned about those who don’t think this is serious. We have the key to a healthy future but too many people aren’t picking up that key.

I can’t be like Michael Moore and blame the food industry or fast food, because we each have a choice whether we go into McDonalds or not, and about what we put into our bodies.

But we need to get the word out about what diabetes can do to you. And we need to support each other in our communities. My good friend died at 52 from Type 2 diabetes; it didn’t have to happen.

RG: What do you think makes it so difficult for people to change how they eat?

CM: We live in a society where you have to work really hard to be disciplined about your food. Abundance is everywhere, and indulging is easier than taking care of yourself. But I see something waging war against my body. For me, it’s me or this disease.

RG: Should the government play a bigger role in diabetes awareness?

CM: I’d like to see public service announcements (PSA) about the seriousness of diabetes and obesity. Let people know what can happen to you if you don’t take diabetes seriously.

RG: I’m going to challenge you on this. Most people think PSAs, which typically scare us, are going to get people to change behavior. But scaring people only works temporarily. More often it scares people into denial because they don’t want to look at something frightening for long.

CM: You’re right and I agree with you. I don’t mean we should totally jump out of the bushes on people, but we need to make them seriously aware of what diabetes can do to you. I made a film, “The Diabetic You,” that will be out next year. The trailer starts with a guy with no teeth. Immediately people think, “Oh my god, this is what diabetes can do?” Now I have their attention. But then the film also shares some great, inspiring stories. 

YouTube Preview Image

 

RG: What else do you think needs to change?

CM: We need to get some fresh faces and new ideas out there. Whatever’s being done to spread awareness isn’t working. You know the TV show dLife, but most people have never heard of it.

They just paid Paula Deen more money than most of us will see in a lifetime, and they’ll spend even more trying to get her to create awareness. But her coming out looks to me and a lot of folks like it was motivated by money, not her heart.

Let’s put awareness into the hands of people with diabetes who have a real passion. Give me a million dollars and I’ll get my bus, be all over the country and on every TV show. I’ll be doing everything I can so me and my team can meet people where they live.

Last year I spoke at a diabetes convention. I told the folks I was bringing some fire with me, but they didn’t believe me and I didn’t see an openness for it. I saw that diabetes was a business.

RG: Why do you do this work, what do you hope for?

CM: Mark Zukerberg said they created Facebook to create social change, not to make money. They made money to help create social change. That’s what I’m trying to do, create social change in diabetes and make money so we can create more social change.

My uncle inspired me to not just speak the change but be the change. I know I can talk, but our film will be out there and our bus will be on the road. I’ll keep turning over every rock and stone so I can leave something better for someone else.

Originally published on Huffington Post.

No comments yet

Patients’ Voices Are Changing Medical Devices

Traditionally pharma and medical device companies design health tools for health care professionals and in clinical settings. What’s been missing is any thought about the end user: the patient.

Even with Silicon Valley recently jumping on the “wellness bandwagon,” pumping out new mobile health apps at the rate of an automatic tennis ball launcher, these are typically designed by technophiles, engineers more focused on a gadget’s operating system than any meaningful outcomes for patients who will use them.

But there’s a movement afoot: the rise of patient voices to influence products related to them. Some of our voices are being sought by health care industry providers, some by patients themselves — particularly, a patient I happen to know, Amy Tenderich, who began stirring these waters several years ago with a famed letter to Steve Jobs.

Tenderich is founder of the news-rich diabetes blog DiabetesMine and has been on a mission to bring the patient’s voice to designing the medical devices we use. Her voice just grew louder with the DiabetesMine Patient Voices Contest.

Diagnosed with Type 1 diabetes in her 30s, Tenderich has made it her personal mission to spur innovation that actually originates with patients. After her letter to Jobs, she launched an online contest called the DiabetesMine Design Challenge, calling for any and all new product ideas that could improve life with diabetes. (The contest was underwritten by the California HealthCare Foundation, and supported by IDEO, a leading design firm with close ties to Stanford University.)

The initiative went viral, developing into an international crowdsourcing competition that has awarded more than $50,000 in prize money.

While competitions asking for the public’s wants, needs and votes are now en vogue, particularly regarding diabetes, Tenderich responds that, “patient-centered design remains far more a marketing buzzword than a real process.”

So this year she and her team launched the DiabetesMine Patient Voices Contest focused on gathering user needs. People living with any type of diabetes, and caregivers, can submit a two- to three-minute video expressing the biggest challenges they live with, what they like and don’t like about current diabetes tools and what they want from their diabetes devices.

Ten winners will receive full scholarships to take part in the DiabetesMine Innovation Summit at Stanford campus this November — a gathering of stakeholders involved in creating tools for living with diabetes that Tenderich kicked off last year. There, informed patient advocates will mix with device designers, Pharma Marketing and R&D, web visionaries, experts from venture capital investment and innovation, regulatory experts, mobile health experts and others involved in creating “solutions” for people with diabetes.

Winners will also receive the new iBGStar glucose meter from Sanofi, a lead sponsor of “Patient Voices.” The iBGStar is the first blood glucose meter that plugs into your iPhone or iPod touch.

Tenderich says, “This product personifies our whole patient-led initiative. It’s about integrating the best and coolest consumer technologies with the medical technologies we depend on to live more comfortable and healthier lives with diabetes.”

I credit Tenderich for, on her own, starting a movement that’s increasingly getting patients’ needs and wants on pharma and medical device companies’ agendas, and moving them to follow with their own initiatives.

Sanofi now runs a design crowdsourcing challenge that pulls ideas from the public about what matters most living with diabetes to innovate in quality, delivery and the cost of diabetes care. I’ve been invited to Roche’s annual social media summit to exchange thoughts, ideas, needs and wants between patients and pharma, and I’ve been invited to Medtronic to see what they’re up to.

I am grateful for all these opportunities to cross the bridge and bring health care industry providers and patients closer together.

Now we need to keep our voices raised, for as Tenderich says, “No one knows better how gadgets, devices and apps can help patients than patients themselves.”

Go to DiabetesMine Patient Voices Contest to participate. Deadline for submissions is June 12, 2012.

Originally published on Huffington Post.

No comments yet

10 Ways I Know I Have Diabetes

No, I’m not going to give you the typical symptoms like thirst, peeing a lot, losing weight, blurry vision and fatigue. I’m going to give you my 10 ways I know I have diabetes. Those 10 things I find myself doing only because I have diabetes.

  1. I find myself screaming, “How many carbs are in that pancake? You don’t know?! Can I see the box?!?” My day is filled with stuff ordinary people never think about.
  2. Shit, shit, shit! (and really I don’t usually curse) I wasn’t going to walk this morning because they predicted rain and now the sun is out! Walk? Don’t walk? Will I risk going low? Will I then have to eat when the last thing I want to do is burn calories only to have to eat more? Damn! How many other people beat themselves up for wanting to take a walk?
  3. I am afflicted with a terrorist torture — sleep deprivation. “I’m so tired, can’t I just lie here and fall asleep?” No, gotta get up, go into the kitchen and stick a needle in my finger to check my blood sugar.” Sunday morning replay: “I’m so sleepy, can’t I just lie here just a little longer? It’s only 6:45 a.m. for goodness’ sake.” No, gotta get up and stick a needle in my finger, and then two more to take my insulin.
  4. “Hmmm… That’s a cute designer diabetes accessory. It would carry all my syringes, vials, test strips.” God, did I really say that? I want out of this club, never mind the cute accessories.
  5. Wiping blood off my counter, my cupboard, my shirt — yuck, my food — with absolutely no notice, hesitation or dismay.
  6. “When’s dinner? When? You sure? Really? You’re sure?”
  7. Glucerna has a cereal for diabetics — a product just for us. Hmmm, I notice there an “us.” I don’t really want to know there’s an “us.” Yet now people with diabetes are worthy of marketer’s attention. Right up there with Lexus drivers.
  8. How often do I really have to go to my endocrinologist? I just found a prescription to get lab work done from July 30, 2011. Oops.
  9. Sneaking lunch into a noon movie, no sweat. Taking my shot in the dark, not so easy. Last time, I think I stuck the guy next to me.
  10. I just checked my blood sugar and forgot the number! Alzheimer’s? Dementia? Is it really true that lows cause dementia? Who cares, now I have to do it again!!

If you don’t know if you have diabetes, find out. Risk factors for Type 2 diabetes include family history, being overweight, having a sedentary lifestyle, high blood pressure, high cholesterol and having given birth to a big baby. You can take the risk test on the American Diabetes Association website.

If you have any of the risk factors, have your health care provider give you a simple blood test. While there are times I’d rather forget I have diabetes, there is never a time I wouldn’t want to know that I have it.

If you find out that you do have diabetes — seven million Americans have it and don’t know — you can write your own list!

Originally published on Huffington Post.

1 comment

Sanofi Launches iBGStar: New Blood Glucose Meter for iPhone

iBGStar with iPhoneI was invited, along with several other diabetes patient online influencers, to Sanofi’s corporate office in Bridgewater, N.J. May 1. It was the eve of their launch of iBGStar.

iBGStar is the first FDA-approved blood glucose meter that plugs into an iPhone and iPod touch and is to be used with the iBGStar Diabetes Manager App.

I will get to the specs of the device shortly, but first I think it’s important to note what I am witnessing — and celebrating — more and more: the sure and steady rise of the patient. 

Sanofi, the third-leading global pharmaceutical company, is interested in what patients have to say. So is Roche, who invites me and 30-plus diabetes patient influencers to its annual social summit, and Medtronics, that just held its second annual event with patients.

While Marshall McLuhan’s famous line, “the medium is the message,” was oft-quoted during my college years, today patients are becoming deliverers of the message, especially in the online space. It’s smart business and, I should say, a healthy paradigm shift for all concerned as pharmaceutical Goliaths increasingly realize and respect the growing power of us little “Davids.”

Sanofi, maker of long-acting Lantus and rapid-acting Apidra insulins, is reaching beyond product into devices and services. Shawna Gvazdauskas, VP and Device Head U.S., told us the mission is to, “Meet patients where they live and improve their experience managing diabetes.” To be customer-centric through innovative and integrated solutions. The part I liked best was when she talked about “delighting customers.”

The iBGStar can be used as a stand-alone device. It has its own display where you’ll see your glucose reading. When you later attach it to your iPhone or iPod touch it will automatically download your data. When measuring your blood sugar while the iBGStar is attached to your iPhone or iPod touch, your number shows up on the small and large display.

SanofiUSDiabetes

Sanofi's Shawna Gvazdauskas, Brian Dolan of mobile health news, me, Emily Coles, Laura Kolodjeski, Sanofi Senior Manager, Patient solutions, Allison Blass of DiabetesMine, Kim Vlasnik of Texting My Pancreas.com, Kerri Sparling of SixUntilMe.com, Adam Brown and Kelly Close of Close Concerns, blogger Leighann Calentine and analyst David Kliff of Diabetic Investor attended the meeting but left before the photo was taken.

The hope is that patients will spend more time with their numbers during idle time during their day and consequently better manage their blood sugar. For doctors, their patients will have their logs with them when they arrive at their appointment or can email them ahead.

As you can see, the iBGStar is the width of an iPhone and less than 1 inch tall. It’s light as a feather, has a 6 second countdown, uses 0.5 microliter blood size — one of the smallest amounts — and meets accuracy requirements.

The iBGStar Diabetes Manager App captures blood glucose readings, records carbs and insulin doses, tags readings according to mealtimes and allows you to add customized notes regarding meals and exercise. You can analyze your data using a logbook, trend chart and statistics. Color-coded screens indicate if blood glucose is too high or too low.

A “share” function allows specific data to be sent via email to your doctor. 

The iBGStar is available for purchase at Apple retail stores and Walgreens stores nationwide and online at Apple.com, Walgreens.com and through Diabetic Care Services. It’s priced at about $100 through Apple and comes with 50 test strips. It’s about $75 at Walgreens and comes with 10 test strips. The iBGStar Diabetes Manager App is available for free from the App Store on iPhone and iPod touch or at www.itunes.com/appstore.

Sanofi offers a copay savings cardso strips will not cost more than $20 per order. Plus, plans are afoot to integrate Sanofi’s GoMeals App with the iBGStar Diabetes Manager App.

So, is this just moving chairs around on the Titanic, or a real advancement for helping patients better manage their blood sugar? I imagine only time and slated studies to analyze patient use will tell. People on average currently check their blood sugar .83 times (less than once) a day. 

Given that only 1.6 million people are today potential users for Sanofi — those who have diabetes and iPhones or an iPod touch — it’s a small pool, and a large commitment. Then again, we have to start somewhere.

Disclosure: I was given a free iBGStar to leave with, my transportation to the meeting was paid for by Sanofi and lunch was provided. I was not asked to write this post.

2 comments

How Society Influences Diabetes Management

2012-04-23-Screenshot20120423at2.44.12PM.pngThis is part two of my conversation with Dr. Ann Albright, director of the Division of Diabetes Translation at the Centers for Disease Control and Prevention (CDC).

In part one Albright talks about meeting the challenges and opportunities to improve diabetes care through public health programs.

Q: What stands in most people’s way regarding preventing and managing diabetes?

Ann Albright: I can best answer that question with a model many of us in the public health sector use. Imagine concentric rings, and in the middle ring is the individual.

For those of us who have diabetes or are at risk, there are things we personally need to do: pay attention to the foods we eat, get physical activity, look at how we manage stress.

All the things we do have some impact and influence on us, but we’re not an island. We all live influenced by the things around us. So the next ring in this model is your family and those in your close network. They also impact how an individual lives with this disease.

2012-04-16-Screenshot20120416at2.02.23PM.png

The next ring out is your life systems, where you work, go to school, your place of worship, where people spend a lot of time interacting with others. Those entities also have a big impact on us.

For instance, what are the policies in your workplace? What support do you get for health care coverage from your job? What types of health care are available to you? All these things have an impact.

The final ring in the model is policy and the bigger community. These are things where you might change people’s access to things. For instance, are there food deserts in the community? How far do people have to travel to get fresh fruits and vegetables? Can they afford them? All these things affect our ability to make healthy choices.

So while we have to think about what the individual does and individual responsibility, the individual does not live in isolation. We all are influenced, and supported or undermined, by those other circles. You have to intervene in those areas so that as we say in public health, “The healthy choice is the easy choice.”

Q: Are there other obstacles for people in managing their diabetes?

Ann Albright: I think three intersecting areas affect people’s ability to take care of themselves. That’s medical management, self-management and ongoing support.

In medical management, while a person has to take their medication as prescribed, the health system they go to also has to have health care professionals who really know how to manage diabetes. People who understand what it’s like to live with a chronic disease. You know like I know that it’s 24/7. You don’t get any breaks.

In self-management the individual has to know how to live with their disease and take responsibility for their daily choices. For instance, they need to understand what their numbers mean and what to do about them. Too many people never get this information.

Regarding support, we know when you live 24/7 with something people get burned out. They get tired and frustrated. Ongoing support is critical, whether it’s from close people in our lives or having a supportive environment.

When you look at the whole picture it’s these kinds of things that broaden your view as to why people wrestle with managing their diabetes.

I’m about to hit 44 years with Type 1 diabetes so I’ve had it way longer than I haven’t. But that doesn’t mean you don’t have days when you’re thinking, oh, my god! Particularly when you’ve done everything you’re supposed to be doing and it’s not behaving or cooperating the way it’s supposed to. Those are the very frustrating days. 

Q: Is there more that stands in people’s way of good self-management?

Ann Albright: I think it’s similar to prevention. In part, people don’t feel any different when they get diabetes. They don’t feel symptoms if their blood pressure or cholesterol isn’t where it should be so they don’t do much.

Diabetes complications may not happen for quite some time, so you’re asking people to act now to prevent something from happening in the future. For many people that’s a difficult thing to do. Also, some people have issues around consistently taking their medication, or they may not be able to afford their medication.

We also do a poor job putting managing diabetes into context for the patient. By that I mean talking about it in terms of what matters to him or her. When I was seeing patients I had a gentleman who was just not interested in checking his blood sugar. He said, “I just don’t know what this is all about. I’m busy traveling and there are lots of things I want to do, not spend my time doing this.”

I wasn’t a magical educator, but I listened to him and discovered he wasn’t afraid of poking himself, he wanted time to do what he liked doing. So I asked about his hobbies and I tied testing his blood sugar to giving him more freedom to do those things he liked to do. That way it became real for him and there was a reason to do it.

Q: What do you do to keep yourself healthy and your diabetes managed?

Ann Albright: I check my blood sugar six to eight times a day. I work to make sure my food choices are healthy. I enjoy yummy things like the next guy but I am particular about how much of those foods I’ll eat. I keep physically active by riding my recumbent bike and dancing.

I also volunteer for groups that support diabetes. It helps you to cope and adjust when you give to others. And I think you have to develop a philosophy about living with a chronic disease. A positive, constructive philosophy. You have to think how can I live successfully with this? 

Of course I would say I didn’t want diabetes and I wouldn’t wish it on anyone, but if it comes to you take it by the horns and make the best of it and use it in a way that can help you be healthy and productive.

I’m incredibly blessed and fortunate to have the opportunity to do something that helps others, to have an impact on improving the public’s health. For me it doesn’t get much better than that.

Personally, I will not forget the openness, energy and passion Albright radiated when I met her. It’s comforting to know she’s advocating for all of us at the CDC.

Originally published on Huffington Post.

No comments yet

Dr. Ann Albright Is Translating Diabetes Research Into Health

Last year Dr. Ann Albright was the closing speaker at Diabetes Sister’s “Weekend for Women.” Albright is the director of the Division of Diabetes Translation at the Centers for Disease Control and Prevention (CDC). 

Dr. Ann Albright

Albright formerly served as the chief of the California Diabetes Program for the California Department of Health Services, president of the American Diabetes Association’s Health Care and Education and senior health policy advisor to the U.S. Surgeon General.

Impressive? Yes, but the reason I wanted to interview Dr. Albright is because she lives with diabetes, and I saw her dance. While on the conference stage talking about strength, music and diabetes, she shimmied with the music and inspired 100 women with diabetes to shimmy along with her.

This is part one of a two-part conversation with Dr. Albright and the 16th in my series on diabetes change leaders.

Q: You lead a team of more than 100 people working to eliminate diabetes through “translation.” What does that mean? 

Ann Albright: Our mission is to create a world free of the devastation of diabetes. Our efforts are to turn the research we gather into public programs and policies to do that. My division has three goals: to prevent Type 2 diabetes, to reduce the burden of diabetes on those who live with it and to help eliminate ethnic, racial and economic barriers. 

The research we do is both surveillance and translation. That means all the statistics you read about diabetes come from the CDC. Then we take the research, and with funding from agencies like National Institutes of Health (NIH) and partnerships with state diabetes prevention and control groups and public health programs across the U.S. create practical programs that work in the real world, particularly for the populations hardest hit by this disease. Our policy work is about scaling and making a program sustainable.

Q: Can you give me an example of creating such a program?

 

Ann Albright: The recent national diabetes prevention program. From end to end we worked to assure quality, reimbursement, sustainability and also, frankly, that people show up and continue to show up. We trained people to deliver the program, looked at ways to expand and scale the program and brought the third-party reimbursement payer to the table. That’s an example of translating the science into a fully functional program.

Q: That must be very satisfying.

 

Ann Albright: This work is at my core. I was trained as a basic researcher doing work at the molecular, cellular level, then moved into clinical work and got credentials as both an exercise physiologist and nutritionist. Now I’ve been in public health and public policy for more than 15 years, and it’s an absolute joy.

Public health is all about finding big solutions to big problems to have the biggest impact on the most people. And, knowing it’s not going to happen overnight. 

In public health you see how people’s health is challenged by everything – from what individuals do to what goes on in the community, to people’s physical environments, to what policies exist that help or undermine their health.

Q: What makes you want to get up every day and take on such enormous challenges?

 

Ann Albright: Working on very tangible things that people with diabetes will experience and benefit from is incredibly rewarding because I know personally what the challenges of living with diabetes are.

I find it exciting to be working in such a high-needs area. We get to implement what we know works and get it into people’s hands. We get the chance to try and prevent people from ever getting Type 2 diabetes. I think if you don’t it’s beyond unethical.

I was diagnosed with Type 1 diabetes when I was 9 and I tried not to go into diabetes. I thought I live this, I volunteer, do I really want to work in this area? But pretty early on in my career it was clear to me that you’re either part of the solution or part of the problem.

When I got diabetes there weren’t meters or insulin pumps. We had no notion how to prevent Type 2 diabetes. Now we’re working to help people get access to those meters and supplies and we’re delivering self-management training so people can learn how to live with this disease.

Q: Does it get to you having diabetes and working in diabetes?

Ann Albright: Yes, it gets to me. But what really gets to me is when something else rears up and disrupts your life and you still have to be attentive to your diabetes. That can be really hard.

I was widowed at the age of 42 — my husband died 11 years ago. The last thing I wanted to do while I was caring for him dealing with cancer was have to worry about my diabetes. Here’s a man who’d just undergone massive surgery to remove a large tumor that ultimately took his life and the first thing he did when he came out from under anesthetic was ask the nurse if I was OK.

That’s one of the hardest things for me, to make my family worry. Of course you wish you didn’t have this burden for yourself, but it’s also a burden for your loved ones. Those people in your life who are there to support you are also living with this disease, and they worry that this can take your limbs prematurely and your heart and your kidney.

I can deal with paying attention to what I’m eating and poking my finger multiple times a day. My challenge is to not have other people worry.

Q: That reminds me of the comedian Rodney Dangerfield. He would say, “Diabetes gets no respect!”

 

Ann Albright: We definitely are the Rodney Dangerfield of diseases! That’s one of the biggest downsides and challenges that diabetes faces. People at large don’t understand diabetes. That if things don’t go well this is a very nasty disease. It chips away at people, particularly if people don’t have access to tools.

Many patients are scared and frustrated by the demands of this disease, and so don’t want to look at it. They don’t see the amputees in hospitals or people in a dialysis unit and they don’t get that it was diabetes that put them there.

It’s easy for the general public to think we’re not doing what we’re supposed to to take care of ourselves, and for some of us that’s true. But many of us are working very hard.

I remember having to go to the hospital for something un-diabetes related and telling my husband, “If anybody makes a negative statement about my diabetes you have my permission to knock them down.” 

Most of all, we need to get people with diabetes to understand that it takes effort to manage it but the alternative can be devastating. We need to get people with diabetes, and the public, to understand that diabetes is a day-to-day adventure and that you have to be able to manage that newness each day.

Stay tuned for part two of my talk with Dr. Albright, where she talks about the challenges we as patients face and the influence of society.

Originally published on Huffington Post.

No comments yet

Page 5 of 12« First...34567...10...Last »