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

The Power of Patient-Expert Books

When the proposal for my second book was being shopped around in 2008, my book agent heard again and again from publishers, “We need a doctor’s name on the cover!” As if a book about an illness, and treating it, is only credible if a credentialed health care professional wrote it.

Today, more and more books are being written by patients — well-educated, informed patients who manage their illness successfully and have experience, practical knowledge and insights to share with other patients.

As the new year incites a rush to become a “new, better and healthier you,” we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it’s often easier to make changes learned from fellow patients with whom you share the experience of a disease. Like support groups and mentor programs, this is fertile soil for positive behavior change. So, I applaud the rise of patient-authors.

Patient-authors also narrate the experience of illness. That is why I hope health care professionals (HCPs) are also reading books written by patients. A book like No-Sugar Added Poetry, for example, can give HCPs immediate access to some of the emotional landscape of living with diabetes.

There is, in my mind, no easier or quicker way to tap into the experience of illness — what patients grapple with, how they feel, and the practical things that must be managed every day — than by reading a patient-written book.

When clinicians do, I believe they will become more mindful and compassionate and the relationship with their patients more trusting. And that can lead to better outcomes for both.

On the diabetes front, I read two new patient-written books late last year, including Amy Mercer’s second book, The Smart Woman’s Guide to Eating Right with Diabetes. It’s a collective of wisdom and tips from several smart women with diabetes, including its author, sharing how they manage their blood sugar and carbs while still eating things they love. Her previous book is The Smart Woman’s Guide to Diabetes.

I also read Ginger Vieira’s second book, Emotional Eating with Diabetes. Her first was Your Diabetes Science Experiment. As a wellness and diabetes coach, Vieira guides readers to develop a healthier relationship with food, and the book comes with worksheets and coaching questions. “When you live with diabetes,” says Vieira, “every meal can feel like work and often comes with guilt or shame over any imperfect choices. Unless you live with this disease yourself, it’s impossible to know the day-to-day emotional weight food carries living with diabetes.”

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My own third and just-released book, Diabetes Dos & How-Tos, is what you don’t get from 12-minute visits with your doctor, yet need: a simple, clear, easy-to-follow and practical guide of the small, yet powerful steps to achieve your optimal diabetes health. The book covers managing food, medicine, fitness and staying positive. I felt compelled to write this book after traveling the country and seeing how many patients are confused and overwhelmed by their diabetes, and as a consequence they suffer complications needlessly. Diabetes Dos & How-Tos is also useful for health care providers to more fully engage and involve patients in their care and guide them through their own chosen, doable actions.

Earlier last year, I read Chuck Eichten‘s The Book of Better, a treatise that we’ll never get it perfect, but we can get it better; Lynn Crowe’s The Diabetes Manifesto, that shared her personal struggle; and an anthology of patient stories in Beverly Adler’s My Sweet Life: Successful Women with Diabetes. Her follow up, My Sweet Life: Successful Men With Diabetes, is on my to-read pile.

The power of books written by patients is that you get the inside view of living with illness and practical, real-world guidance on what works. The power of books written by patients who are also medical professionals offers something again — medical expertise with empathy. On my bookshelves are the works of certified diabetes educator/patient/authors Gary Scheiner, Sheri Colberg, Wil Dubois and Joy Pape.

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Matthew Lore, the editor who bought my second book that turned into 50 Diabetes Myths That Can Ruin Your Life, in 2001 published the first of two books in a series written by people he identified on the cover as “patient-experts.” One of those books was Gretchen Becker’s A Patient-Expert Walks You Through Everything You Need to Learn and Do: The First Year Type 2 Diabetes. It’s still one of the best-selling diabetes books, as is patient-expert Jenny Ruhl’s Blood Sugar 101: What They Don’t Tell You About Diabetes.

Lore told me through an email:

“I gleaned from message boards early on that patients wanted to communicate with each other, and that well-informed patients, with a gift for communicating what they had discovered about their condition, were a legitimate source of credible and meaningful information that could benefit others with the same or a similar condition.”

Lore was right. I find it confirmed every time I read a patient-expert book also outside of diabetes: Richard Cohen’s Blindsided, about his multiple sclerosis and cancer; Cohen’s and Jill Sklar’s books that chronicle several patient experiences, Strong at the Broken Places and The Five Gifts of Illness, respectively; Jill Bolte Taylor’s My Stroke of Insight, about her massive stroke; Kathryn Greene-McCreight’s Darkness Is My Only Companion, about living with bipolar disorder; Kay Redfield Jamison’s An Unquiet Mind, about her manic-depression; Temple Grandin’s The Way I See It, about her Asperger’s; and Michael J. Fox’s book, Always Looking Up, about his living with Parkinson’s disease.

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Having Type 1 diabetes himself, Lore knew the value of patient-experts and the power of their books. For patients, it’s connection, shared learning, support, and inspiration from which to make positive changes. For health care providers, invaluable insight into the everyday lives of patients that can transform how they work with patients.

Originally published on Huffington Post.

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10 Diabetes Advances of 2012

As we count down the days to the end of the year, here’s a round up of 10 diabetes products, drugs, gadgets, and insights that occurred in 2012.

Many of these tell me that companies are listening harder to patients’ wants and desires. And with any luck, all of these will make life a little better in 2013 for the 26 million Americans with diabetes.

1.  Tandem’s t:slim insulin pump. The first insulin pump with a touch screen interface that’s bright, gorgeous and emulates the look and feel of an iPhone/iPad. Slim enough to fit into your jeans pocket, Tandem also says its insulin delivery system provides greater accuracy and more precise dosing.

2.  Dexcom’s G4 Continuous Glucose Monitor. Dexcom has for many years been most patients’ continuous glucose monitor of choice. Now with its fourth generation CGM, the G4 features an extended 20-foot range, a smaller and more accurate sensor, and a more attractive receiver that comes in three different colors and has a color display so you can more immediately see your blood sugar highs and lows and recognize how you’re trending.

3.  iBGStar mobile glucose monitor. We saw it coming, and it came, from Sanofi. A blood glucose meter, smaller than a stick of gum, that fits into your iPhone, increasing the odds that you’ll actually have it with you. With its own app, you can download your blood sugar numbers, see your patterns and email your results to your health care provider. You can also use the iBGStar alone, separate of an iPhone.

4.  Smaller OmniPod. The FDA finally approved Insulet’s next-generation OmniPod tubeless pump. It’s 30 percent smaller, 40 percent lighter and coming out early next year.  

5.  Poor vision aided by iPads and Kindles. Research suggests backlit tablets like iPad and e-readers help patients who suffer some diabetes-related vision problems to read. This may help the millions of people who suffer from diabetes eye diseases like macular degeneration and diabetic retinopathy.

6.  Lucentis, new drug for diabetic macular edema. The FDA approved the drug Lucentis from Genetech, the first major treatment for diabetic macular edema. Diabetic macular edema (DME) may occur as a result of high blood sugars over time when fluid leaks into the retina, the part of the eye where straight-forward vision occurs. DME can cause blurry vision and vision loss. Lucentis is administered as a once-a-month injection. 

7.  SENSUS pain killer for diabetic neuropathy. Medical device company NeuroMetrix recently gained FDA approval so that it can make its SENSUS device widely available. SENSUS transmits transcutaneous electrical stimulation to alleviate chronic pain in the lower leg and foot, often caused by the neurological complications of diabetes. The device is worn on the upper calf and generates an electric current that stops nerve pain signals from reaching the brain.

8.  MRI brain scans reveal empathy helps manage pain. Not surprisingly, at least not to me, researchers discovered that when doctors listen and express empathy, patients end up both more satisfied with their visit, and healthier. And now they can point to MRI brain scans that showed a neurobiological link: Patients who were treated by empathetic doctors were better able to tolerate pain. While it was a small study, it seems intuitive as well as biological.

9.  Treating Pre-Diabetes Can Prevent Diabetes. Good news for the almost 80 million Americans with pre-diabetes. The latest observations from the ongoing Diabetes Prevention Program Outcomes Study show that a key to preventing diabetes in people with pre-diabetes is enabling insulin-producing beta cells to rest, even briefly, and restore normal blood sugar regulation. This protects the beta cells from exhaustion and death. So apparently, the key to diabetes prevention is not how the disease is prevented, but restoring normal glucose regulation, even briefly through lifestyle changes and possible medication. 

10.  T1D Exchange accelerates Type 1 diabetes research. The T1D Exchange has established a unique model to speed better treatments, therapies and research for Type 1 diabetes. Created through funding from the Leona M. and Harry B. Helmsley Charitable Trust and consisting of a network of 69 clinics across the U.S., a biorepository, Clinical Registry and the social media site, Glu, that launched this past November, the T1D Exchange fosters faster and more fluid information-transfer and sharing among diabetes patients and clinical, research, pharma, medical device, education and outreach organizations.

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Disclosure: I was not asked to write about any of these products, nor compensated in any way. I attended a press conference for the launch of the iBGStar, where I was given one as a sample.

Originally published on Huffington Post.


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Life, Death and the Birth of Marjorie’s Fund

Dr. Jason Baker (on left in Vellore, India)

I met Dr. Jason Baker (pictured on left in Vellore, India) at a fundraiser for his foundation, Marjorie’s Fund. The raised finger you see in the photo means “Proud to be Type 1.”

Little did Baker know that 10 years after medical school he’d be standing in a chic SoHo boutique because of a girl named Marjorie, who he would meet in Uganda. Nor did he know that, because of her, he’d be changing thousands of lives today.

This is the 18th in my series of interviews with diabetes change leaders.

RG: Who is Marjorie, and what is Marjorie’s Fund?

Jason Baker: Marjorie was a young woman I met two years before she died. She was 29 when she died and had many diabetes complications. She was 3 years old when she got Type 1 diabetes.

I was struck by how positive she was. Even as she was dying, she was teaching others, including health care providers in her country, about diabetes. At the same time her story was awful. Yes, she survived to 29 because a wealthy Ugandan helped her get supplies and insulin, but there was never enough to prevent terrible complications.

I went back and forth to Uganda many times during this period as I was teaching there. I watched Marjorie’s whole extended family struggle financially to pay for her health care. And I watched her spiral downward.

I saw that even if she could get the kidney transplant she needed at the end of her life, how clinically impossible it would be to survive it in Uganda. So I helped her have a graceful death and I realized I wanted to help others avoid her fate.

Marjorie’s Fund is my way to help level the playing field for people with Type 1 diabetes. To get people in underdeveloped nations enough resources and education so what happened to Marjorie doesn’t keep playing out.

RG: Is Marjorie’s Fund different than other charitable organizations that get diabetes medicine and supplies to people in need?

JB: Programs like Insulin for Life and Life for a Child that do that are wonderful. They help kids stay alive. But because the kids don’t have enough supplies, their blood sugars are often in the high 200s and 300s, and they get terrible complications early in life.

Bringing in test strips and insulin is not really a solution. Nor is bringing in foreign aid. So we’re partnering with organizations on the ground, like those you mentioned, and looking to strengthen the infrastructure in underdeveloped areas, provide local education through local providers and peer educators, and work with pharma companies to lower the cost of supplies. We’re also building a lobbying force, which is so important to improve the standard of treatment and care.

Rwanda Diabetes Education Center
Rwanda Diabetes Education Center and its fourth class of diabetes students who learn diabetes self-management skills and a vocation, so they can afford their medicine and supplies.

RG: You’re also involved in research and have a hypothesis about how we might find the cause of Type 1 diabetes.

JB: When I was diagnosed with Type 1, I was in medical school and had just been to the Republic of Georgia. Since then, I’ve come to believe we’re looking at the wrong populations for the cause. We’ve been studying populations in North America, Europe and Pan Asia ad nauseum, yet we can’t find the key. We should also be studying the developing world.

If we look at isolated populations in Africa and India who have Type 1, the circumstances of their diagnosis, whether there was an outbreak of something, if they’d recently traveled, and so on, and compare them with other isolated populations in a very different environment, like Scandinavia, I think we’d see some common factors. This could help us narrow our scope and hone in on the cause.

RG: Why are we so drawn to help those overseas when we have people in the U.S. who don’t have access to medicine and strips?

JB: When you look at the people who have no resources here, and there definitely are those who have limited resources, they still have two to three times the resources that the populations in the developing world have.

Plus, in places like Uganda or Sub Sahara, Africa and India, many providers don’t even understand the basics. Like the need to treat early and aggressively, or the power of exercise and diet as part of treatment.

While I was in Ethiopia with local health care providers, I was eating the local food and testing my blood sugar every 30 minutes. The doctors asked me, “Dr. Baker, why do you check so much?” I explained the only way to see the impact of food on blood sugar is to check your sugar, and you can’t do that hours after you eat. These are intelligent people, but without ample test strips or access to continuous glucose monitors they have no opportunity to see food’s impact on blood sugar.

RG: Why, in a world where we have the medicine and supplies to make Type 1 diabetes a manageable condition, is two-thirds of the world dying or getting awful complications?

JB: It’s money. It’s the cost of strips. Whatever type of insulin we use, whether the more expensive analogs or less expensive regular varieties, without the ability to monitor your blood sugar, you’re shooting in the dark.

Providers overseas often throw their hands up in the air. They don’t know how to manage people on insulin, particularly people with Type 1 diabetes. And without having enough strips, they can’t work out how their own culture and diet affect blood sugar.

RG: Does the work you’re doing today surprise you?

JB: I was raised by parents who emphasized the glass is half full and to use whatever situation you’re faced with to become stronger and learn from it. I guess that’s what I’m doing. I feel having Type 1 diabetes has actually enriched my life and opened more doors than it could ever possibly close.

I do think managing Type 1 diabetes is difficult, and I wouldn’t wish it on anyone, but it gives me a sense of purpose and clarity about what I’m meant to be doing. When I was diagnosed it woke me up to what’s important in life, like relationships and helping others. Looking back, I don’t think I’d change anything.

I also think we can’t live in our own little bubble. We have to help each other. That’s kind of been the cannon of my life and that’s what Marjorie’s Fund is about.

RG: How is Marjorie’s Fund funded and how can others help?

JB: We’re funded by private donors and my own pocket. We just got our 501 status earlier this year, so we’ll be ramping up our outreach, searching for donors, and seeking grants to take our work to the next level.

We certainly need financial assistance. And we need people to help spread the word so all of us out here doing this kind of work can better align our efforts. And, so that people understand Type 1 diabetes better, care more and do something. Lobbying support is as important as financial support.

True change will happen when people get involved and raise their voice. That’s what my friend Marjorie was doing when she died.

 

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Originally published on Huffington Post.

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The Blue Circle: Diabetes Symbol Mostly Unused by U.S. Organizations

Blue Circle - Diabetes SymbolThis is the universal symbol for diabetes. Yet, while the blue circle became the global symbol in 2007, it’s been fighting a battle to gain that recognition among diabetes organizations in the U.S.

Why does that matter? Think pink ribbon. You thought breast cancer, didn’t you? That’s the power of one unifying symbol for a disease. Such a symbol can potentially generate greater prevention and care efforts, treatment advances, and more funding for research and a cure.

The Blue Circle was created by the International Diabetes Federation (IDF) in 2006 as part of a campaign urging the United Nations to pass a resolution to recognize diabetes as a serious global health threat. The IDF was successful. According to the International Diabetes Federation, UN Resolution 61/225 recognizes diabetes as debilitating and costly, and encourages all nations to develop prevention and treatment policies. It also designates November 14 — the birthday of Frederick Banting, one of insulin’s discoverers — as World Diabetes Day to be recognized by the UN.

The blue circle became the official logo mark for World Diabetes Day, and the universal symbol for diabetes. Yet only the American Association of Diabetes Educators (AADE) adopted the Blue Circle as such.

American Association of Diabetes Educators

Sandra Burke, AADE’s President, said, “When you see the pink ribbon, the automatic recognizable symbol for breast cancer, you’re reminded breast cancer is serious. When people look at the Blue Circle we want them to be able to say, this is about diabetes, a disease that kills even more people than breast cancer. We need to solve this.”

“By universally accepting a symbol for diabetes,” says Burke, “we have the beginning of developing a unified message that diabetes is serious and widespread. As an association, the AADE can use it to deliver information, and when we all go to Capitol Hill we can say to our legislators, this is the blue circle, this is what it means and this is why it’s important to your constituency. That’s the power of one symbol.”

I couldn’t agree more. So, why haven’t any other American diabetes organizations adopted the Blue Circle as the symbol for diabetes?

American Diabetes Association

Through an email exchange, Colleen Fogarty, Associate Manager, Communications, for the American Diabetes Association (The Association), told me as a member of the IDF for more than 30 years, the Association commends the IDF and its member organizations for using the blue circle. However, the Association reaches the American public by focusing on its own movement, “Stop Diabetes,” and Stop Diabetes has its own symbol.

For me that begs two questions: 1) Why can’t organizations use the blue circle along with a campaign symbol? 2) Are diabetes organizations at times more me-focused than mission-focused?

Diabetes Shirts

My T-shirts represent a dozen different diabetes-related organizations — and appear to represent as many different causes.

Yet if each displayed the blue circle, it would create immediate recognition and awareness for a united cause — to prevent, manage and eradicate diabetes.

Diabetes Research Institute Foundation

Lori Weintraub, APR, vice president of marketing and communications for the Diabetes Research Institute Foundation (DRIF), says managing many symbols can be problematic.

The organization has its own logo, another since the DRI is part of the University of Miami Miller School of Medicine, plus specific campaign and event logos.

Blue Circle Snowman

But, Weintraub said, the DRI has frequently made use of the blue circle alongside its logo and other campaign marks in its materials (like its holiday card here, which I love), videos, and last year’s “Reason to Believe” campaign.

“If we all came together to use the blue circle I think it would benefit everyone,” Weintraub said.

A common symbol helps patients feel less alone and that someone’s working on their behalf.

It reminds the public that diabetes is serious and needs to be cured. That reminder, and that we can find a cure with people’s help, would certainly benefit the DRI.”

Weintraub thinks the problem in getting everyone to use the blue circle is reaching agreement how to use it so that it doesn’t compromise or confuse one’s brand.

JDRF (Juvenile Diabetes Research Foundation)

Jeffrey Brewer, President and CEO of the JDRF spoke about a different obstacle — the concern that under a universal symbol for diabetes, since diabetes is so commonly associated with Type 2 diabetes, that Type 1 diabetes will become less visible.

“We’re very supportive of raising awareness of diabetes and the impact of the disease,” said Brewer,” but many of our constituency want to have a separate identity for Type 1.”

Brewer does, however, see an advantage using a universal symbol for funding around complications. “Complications of living with high blood sugar,” says Brewer, “are the same whether you have Type 1 or Type 2. To the extent that a common symbol would bring more funding and energy to this area of research, it would benefit JDRF.”

“So, I agree the symbol can offer value in collaborating to raise awareness and drive funding, but I’m not convinced that its broad use will significantly advance awareness of Type 1 diabetes, which is one of my goals at JDRF.”

Diabetes Statistics

    • 25.8 million children and adults in the United States have diabetes – 8.3% of the population

 

With diabetes threatening our health, our lives, our economies, our health care resources, I’d love diabetes organizations to come to the table and have the conversation Weintraub suggests about how each can use the blue circle in a way that doesn’t compromise their own brand — and makes diabetes instantly recognizable and significant.

I also know two things. One, things don’t happen until you decide to make them happen, and two, we are stronger together.

If you want to show your support and use the blue circle, click here.

What do you think? Would having a universal symbol raise diabetes awareness?

Would it lead more people to take preventative measures?

Would it accelerate new treatments?

Would it lead to more research funding?

Do you believe we are stronger as a whole?

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Originally published on Huffington Post.

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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.

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(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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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