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

DRI’s BioHub May Cure Type 1 Diabetes

DRI believes the BioHub is the next breakthrough and perhaps the final breakthrough.


Scientists at the renowned Diabetes Research Institute (DRI) at the University of Miami may be just five to seven years away from curing Type 1 diabetes. The institute is taking quick and dramatic steps toward what may finally be a biological cure for type 1 diabetes, the DRI BioHub.

The BioHub is an engineered “mini organ” that will house insulin-producing (islet) cells that, like normally functioning islet cells, sense blood sugar and release the precise amount of insulin to maintain normal blood sugar levels. “It will mimic the insulin function of a normal pancreas,” Dr. Camillo Ricordi, DRI’s Scientific Director and Chief Academic Officer, told me in a phone interview. “It will restore natural insulin production for any patient, no matter how long they’ve had diabetes.”

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The DRI is initially focusing on the BioHub’s use in patients with Type 1 diabetes. However, it may also be applicable for a population of patients with Type 2, as the additional islet cells would help normalize blood sugar levels.

The BioHub model (size of a quarter) on purple gloved 
hand. Islet cells can exist in this silicone sponge like disc
that’s compatible with the body or be put in a vein in the 
abdomen that’s tied off into a sac with its own blood supply.
(Photo courtesy of DRI.)

All Needed Technologies Coming Together

“This is the first time I feel the pieces of the puzzle are all falling into place,” said Dr. Ricordi:

For the first time we have the convergence of all the different technologies we’ve been developing over the years, and that we need, those dealing with autoimmunity, cell sources and auto immune suppression, to have a biologic cure.

We have a system for drug delivery in the local micro environment, successful anti-inflammatory strategies to prolong the success rate of islet transplants and we’re making BioHub materials that we’ll soon submit to the FDA. Plus, our experimental models tell us we’re moving in the right direction, toward transplantation without immunosuppression drugs.


Overcome Islet Cell Transplant Barriers

The BioHub, if successful, promises to overcome the three obstacles that islet cell transplantation has not — a steady supply of cells that can be harvested from multiple sources, an environment where the cells will reside that is biologically supported, and no need for anti-rejection drugs.

The BioHub would be placed at a site in the body that would give the new insulin-producing cells adequate space to receive proper nutrition, oxygen and protection from inflammation, a far better home for them than the liver, the currently used site for islet cell transplants. The BioHub will be a bioengineered, new pancreas-like home so that transplanted islet cells have a much better chance of thriving.

“If we can identify an optimal place within the body to place the BioHub, then I believe this disease is totally reversible, which has been the DRI’s ultimate goal since our inception,” says Luca Inverardi, M.D., deputy director of translational research.

Right now one of the sites being tested is the omentum, an apron-like covering over part of the stomach and intestine, which is protective, plentiful with blood vessels, and would physiologically be similar to how insulin is released in non-diabetic patients.

Current Timeframe

Dr. Ricordi is very careful to say he doesn’t want to make promises he’s not sure he can keep in terms of a hard-and-fast timeframe for widespread clinical use. “The jury’s still out as to how we will treat thousands of patients, and I want to know how to cure millions and millions.”

However, the DRI has already met the FDA’s requirements to start the process toward research and development, and the first human trials with the initial component of the BioHub and housing materials are expected to take place within a year.

Having the DRI Federation, scientists from Canada, Europe and Asia, working in concert with DRI, also promises an efficient and hopeful timeline, including overcoming unexpected obstacles. “We will know within a year or two if what we have works and if we have identified the ideal source of insulin producing cells,” said Dr. Ricordi.

For those of us who’ve had Type 1 diabetes any length of time, we all remember being told the cure was five to 10 years away. For me that was 41 years ago, and Dr. Ricordi is very aware of the promise that’s been made to so many.

“In 1985 we felt we were around the corner from a cure,” Dr. Ricordi said, “so I don’t want to raise false hopes.” But he is hopeful, and dedicated to the pursuit of a cure.

“Now I think we can make islet transplants work long-term without continuous anti-injection drugs, just by engineering this micro organ in a site that can provide protection to the cells without affecting the rest of the body. I am confident,” said an urgent-pressing Dr. Ricordi, “that this approach may move cellular therapies and biological replacements far enough ahead to bring us to our final goal, the cure for diabetes.”

Originally published on Huffington Post.

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How Illness Can Make Us Better

Living with a chronic illness is, for the most part, seen as a detriment. And without question, after living with Type 1 diabetes for 41 years, I’d give it up if I could.

The five daily injections and 10 finger-pricks on average I do each day. The heart-stopping moment when something goes wrong and I fear it’s diabetes-related. The never-ending decision-making about everything I do — eat, walk, get on the subway, wait for my delayed flight with no food, go into a meeting or a movie — trying to prevent complications from high blood sugar over time, or losing consciousness at any time from low blood sugar — if low enough it can kill me on any ordinary day.

Yet I titled this “How Illness Can Make Us Better” because it can. Living with illness can also provide opportunities to turn “bad” into “good.” Illness bestows for many, and perhaps particularly for young people, deeper wells of compassion, maturity and the desire to make a difference in the world.

Three AYUDA volunteers who spoke with me when I was writing my previous post “Small Diabetes Organization AYUDA Teaches Self-Care and Social Change” have already, at a tender age, used what others would consider an impediment — their diabetes or their proximity to diabetes — to change the lives of those less fortunate than themselves and inspire hope in places where hope is scarce.

As AYUDA’s elite squad, they have cheered, rallied, role-modeled, touched, taught and brought much for a healthier life to youth with Type 1 diabetes in Latin American countries where poverty is high and health education is low.

Here are excerpts from their stories and a look at how chronic illness can, in some ways, make us better.

Sam Wohns, 22 years old, always had a well-developed social conscience, but AYUDA gave him a stage.

Photo by c+ncreative.com

When Sam was 10 years old, his parents gave him a book on world geography. On the last page was a spinner and whatever country the spinner landed on you had to answer the question, “How many calories do people there eat every day?”

“I learned that many young people live on less than 900 calories a day,” Sam told me. “So the next day I only ate 900 calories of rice. As an act of solidarity.”

Sam signed up as a volunteer with AYUDA the week after his diagnosis of Type 1 diabetes at 17:

I knew having Type 1 diabetes here wouldn’t change what I could do with my life. I also knew in lesser-developed countries it could be life-threatening due to limited access to supplies and education. I saw that as an injustice and I wanted to do something about it.

In Ecuador, there isn’t a single pediatric endocrinologist or nurse educator, so AYUDA’s peer-education model is invaluable. It is not just about sending supplies.

I met a little girl there who could only test her blood sugar once a day and she ran out of strips four days before diabetes camp. She was excited to come to camp, but then her grandmother backed out because it would require her to miss work. We really felt this would negatively impact the girl’s life, so a group of us drove to their home, several hours away, and were able to persuade the grandmother to come.

At camp, she met other parents and grandparents caring for children with Type 1. She learned a great deal to help her care for her granddaughter. Before, she didn’t even know how to administer insulin. That’s just a small example of how we saw a need and built a relationship to help address it. We can’t solve every problem, but we made a difference to that family.


Sam is studying social movements of Latin America at Harvard.

17-year-old identical twins Isabel (has Type 1 diabetes) and Madeline Chin


Madeline says she’s always had the luxury of doing something positive without having to live with diabetes like her sister. Together they’ve done advocacy work, a public service announcement, helped children and participated in AYUDA. “It’s always been important to me to be an advocate for diabetes,” said Madeline, “even though I don’t have the disease myself.”

To participate in AYUDA the girls each had to raise $5,500 to cover their expenses. A sizeable sum, Madeline said they never doubted they could do it. They spent their summer writing letters to family and friends, conducting email campaigns and sourcing funds through Facebook.

“The best part of the experience for me,” said Isabel, “was being able to relate to the kids as a diabetic. It wasn’t just about teaching them, but seeing them get so excited about being together with others who had diabetes and take control of their lives. Every night at dinner a new boy or girl would give himself his first shot. We were so excited to be part of it.”

“What stays with me,’ said Madeline, “was while we were reflecting at the end of camp about what went wrong, Merith [director of international operations] said none of it really mattered because even though we couldn’t see it right away, the work we were doing was making a difference in people’s lives and to the diabetes community in Ecuador.”

Both girls are planning to pursue public health when they head off to college next year.

Vanessa Larco, 24 years old, doesn’t have diabetes


Vanessa’s long had diabetes in her family. Her mother, a doctor, has a diabetes clinic in Haiti where Vanessa grew up. “My parents and my grandfather always talked about helping others and sharing what you have,” said Vanessa.

“Being in the Dominican Republic really opened my eyes, in a good way. I saw the kids rally around the international volunteers. They saw how well they were living with their diabetes it made them feel better about themselves. The parents, seeing people who’ve lived with diabetes for decades, thought maybe my child will be okay. There’s a stigma attached to diabetes, but after seeing the volunteers they didn’t think that way anymore.”

“This experience changed me. Before, I helped people because that’s how I was raised. But I feel like I’ve become a better person, that it’s really in me now. Every time I talk about my experience, or just remember the kids smiling, I can’t keep from smiling.”

Vanessa’s already told her company she’s going back again next year.

I won’t tell you living with a chronic illness is easy. I won’t tell you it isn’t isolating or a burden, or that it doesn’t come with struggle at times. But it can also offer the opportunity to live life more fully, more compassionately, with greater purpose, empathy, appreciation and pride.

Or as Sam said, “the opportunity to make a huge impact and change lives, including your own.”

Sam, Madeline, Isabel and Vanessa also prove being a change leader has no age limit. This is number 18 in my series on diabetes change leaders.

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Small Diabetes Organization AYUDA Teaches Self-Care and Social Change

Sam is a 21-year-old student at Harvard who has already spent four years in and out of Latin America helping local diabetes agencies and youth with diabetes. A week after Sam’s diagnosis with Type 1 diabetes at 17, he became a volunteer with AYUDA (American Youth Understanding Diabetes Abroad).

His experience with Ayuda has likely been as vital to his preparation as Harvard will be to achieve his ambition: empower businesses to solve social ills.

AYUDA, run by three full-time and one part-time staff member under the leadership of co-founder and chairman Dr. Nick Cuttriss, brings diabetes education to nine Latin American countries, primarily Ecuador and the Dominican Republic. It also raises the social conscience of its volunteers.


In the countries where AYUDA works, Merith Basey, director of international operations, told me as much as 40 percent of the population live on less than $2 a day and blood glucose test strips cost approximately $1 a strip.

(Photo: Merith Basey and a young participant, Melissa, in Ecuador)

A Small Organization Fulfilling a Big Goal

AYUDA is different than other humanitarian diabetes organizations, and I am fascinated by its proposition. First, it brings diabetes education and human resource support, not medical supplies, to local diabetes communities in need. As Basey told me, “Providing insulin and strips alone, we know isn’t going to result in healthy, happy children. A lack of education is as dangerous as a lack of insulin.”

Second, its founding principle is youth helping youth. AYUDA was founded in 1996 by Dr. Cuttriss (today a pediatric endocrinology fellow in Miami as well as AYUDA’s chairman of the board) and a friend when they were 16 years old and had a friend who had Type 1 diabetes. Helping their friend, they were soon helping other young people with diabetes, and they saw young patients connected more with, and were more responsive to, them than they were to adults and medical professionals. They experienced the power of peer-mentorship.

Third, AYUDA grew its mission after learning how their volunteers’ experiences were affecting them.

“We set out to provide education and support to local diabetes communities in conjunction with our local partners,” said Basey. “But as our volunteers began to see diabetes in a global context, which they hadn’t before, their focus changed. Many college students changed their majors to global health studies, public health, pre-med or human services.”

AYUDA aims now to plant a seed for social change and entrepreneurship in its volunteers.

AYUDA also saw the experience led many volunteers to take better care of their own diabetes. Plus, siblings of volunteers who participate, never having had a role to play alongside their sibling before, now do, and this benefits the family dynamic of diabetes.

I asked Basey, who does not have diabetes, what keeps her doing this work after eight years. “I’m consistently inspired by how quickly children, young people and families with diabetes change when they realize that there is hope, when they get the knowledge they need and see that they can manage this condition and live healthy normal lives.” 

2013-02-12-01.jpeg“We estimate we’ve reached about 70 to 80 percent of children and youth with Type 1 diabetes in some of the countries we’re working in with our partners,” said Basey. “And I feel it’s our responsibility to continue and to grow. We’re also reaching more people more quickly after diagnosis and that means more children will suffer fewer complications.”

(Photo: Camp in Ecuador run with AYUDA partners la Fundacion Diabetes Juvenil Ecuador)

Becoming a Volunteer

AYUDA volunteers are mostly high school and college students, and about 50 percent are living with Type 1 diabetes, but you don’t have to have diabetes. Volunteers participate in online training in diabetes, global health, social entrepreneurship, advocacy, and must also fundraise to cover their own expenses and help fund the educational camps where they’ll be working. AYUDA only receives some revenue from foundations and private donors.

Volunteers then congregate in Washington, D.C. over the summer to meet with AYUDA’s local partners and finally go in-country where they work with those partners, and volunteer medical professionals, on local projects, including spending one to three weeks at educational diabetes camps. Volunteers may also make in-home outreach visits to families that live far from the capital cities.

Thirty percent of AYUDA’s volunteers volunteer more than once, and many more stay involved in some capacity. Almost 100 percent, Basey said, find that while the experience often wasn’t what they expected, it has an enormously positive impact on their life. And that’s just what AYUDA wants.

“We hope while we bring change in Latin America,” said Basey, “we are helping young people have a broader vision of what is possible and their capacity to create change, whether that’s in the diabetes community or somewhere else.”

Apply: AYUDA is taking volunteer applications through Feb. 26.

In my next post, I’ll bring you the thoughts and experiences from some of AYUDA’s volunteers.

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‘The Doctors’ Links Food to Brain Health

Ok, they got me with the promo. “This is your brain. This is your brain after making poor food choices. Next on The Doctors.” The image was a brain shrinking. So I had to watch.

I learned some interesting findings about food and brain health, and also which foods help heal and prevent some common ailments, including low mood and energy.

While most of us know we should be eating more fruits and vegetables and less sugar, processed foods and refined carbohydrates, it appears, as seen from brain scans, that brains actually shrink as you become obese.

It’s also interesting that our brains compel us to eat more when we eat sugar and foods containing sugar, including fructose. They stimulate the pleasure center of the brain. That stimulation drives the brain to want more. Your brain then sends you a signal that it’s not satiated, so eat more! In contrast, when you eat a low sugar meal the pleasure center of the brain calms down.

Here’s the list of what foods may help benefit what ailments:

Cold Sores: For prevention, try oil from the lemon balm plant. To slow the viral growth, honey and yogurt both may help.

Bruising: Beans, kale and pineapple can help speed healing due to their anti-inflammatory properties.

Macular Degeneration: While most fruits and vegetables support eye health, kiwi and fatty fish like salmon and tuna can help slow the progression of macular degeneration.

Sinus Infection: Eat foods high in zinc, particularly oysters, lean meats and whole grains. They can help prevent colds and flu, which can lead to sinus infections.

Sex: To fuel your libido, reach for nuts, oysters and garlic.

Dry Flaky Skin: Mangoes help act as an internal moisturizer.

Fine Lines, Wrinkles, Age Spots: Cottage cheese for its antioxidant properties.

Acne/Rosacea: Mushrooms for their riboflavin and anti-inflammatory properties

Psychiatrist Dr. Drew Ramsey, co-author of The Happiness Diet, cited these top five foods as brain-boosters and mood-enhancers:

1. Mesclun greens 
2. Walnuts 
3. Red beans 
4. Blue and red skin potatoes 
5. Coffee and chocolate

Dr. Ramsey also stated, “Food choices may affect your brain more than anything else,” and cited studies that link poor diet to depression. Those who eat more processed foods seem to have an increase in depression. Ramsey recommended wild salmon and shrimp and cherry tomatoes as mood-enhancers.

You can catch excerpts from the program, and much of this information is also in the book the show highlighted, Foods That Harm, Foods That Heal.

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‘Talk to Your Doctor’ May Not Help if You Have Diabetes

Recently, while traveling to Arizona to give a diabetes workshop, I was struck again by the lack of knowledge and urgency many physicians have regarding diabetes.

Seated at the airport, my husband was talking to a woman about health, whose clearly-overweight mother was sitting next to her. The woman said her mother was on a lot of pills and her doctor wants to put her on another one. My husband asked, “Does she have diabetes?” 

“No,” said the woman. My usually-quiet husband persisted, “Has your mother had a recent blood sugar test?”

“Yes, her blood sugar was 187,” said the woman. “But the doctor said that’s nothing to be concerned about.”

Depending on the test, a blood sugar of 187 mg/dL (10.3 mmol/L) can very much be something to be concerned about. It may mean you may either have diabetes or pre-diabetes. “What did her doctor advise her to do?” I asked, expecting at least lifestyle guidance if not medication.

“Nothing,” said the woman staring at us, confused.

About one-fourth of the nearly 26 million people in the U.S. with diabetes don’t know they have it. That’s a little more than 7 million people walking around with undiagnosed, untreated diabetes.

Of the nearly 80 million Americans with pre-diabetes, far fewer likely know they have it — even while most medical professionals consider pre-diabetes the first stage of Type 2 diabetes.

Plus, people with pre-diabetes, just like those with Type 2 diabetes, are at higher risk for heart disease, stroke and eye disease.

Unfortunately, many family physicians have not been specifically trained in diabetes. As endocrinologist Irl Hirsch told me, they probably got a half day training on diabetes in medical school 25 years ago.

Many simply aren’t knowledgeable about the latest guidelines for diagnosing diabetes, newest medications and devices, or recommended treatment protocols. Nor do some seem to take higher than normal blood sugar seriously, caution their patients and recommend lifestyle changes — like healthy eating, weight loss and activity. 

Know the facts. First, know if you’re at risk for diabetes.

Risk factors for Type 2 diabetes. You:

  • Have a family member with Type 2 diabetes.
  • Are overweight.
  • Are sedentary.
  • Are African-American, Hispanic, Native American, Asian-American or Pacific Islander.
  • Have high blood pressure (140/90 or higher).
  • Have polycystic ovary syndrome, a female hormonal disorder.
  • Have acanthosis nigricans (skin around neck or under armpits appears dark and thick).
  • Gave birth to a baby weighing more than 9 pounds.

If you have one or more risk factors, get your blood sugar tested. Tests to diagnose diabetes:

1. Fasting plasma glucose test (FPG) — A blood sugar test performed before breakfast. A blood glucose (sugar) level of 126 mg/dL (6.9 mmol/L) or above indicates diabetes. A level between 100 and 125 mg/dL (5.5 – 6.9 mmol/L) indicates pre-diabetes.

2. Oral glucose tolerance test (OGTT) — A blood sugar test two hours after you drink a sugary drink. A blood sugar reading of 200 mg/dL (11 mmol/L) or above indicates diabetes. A level of 140 to 199 mg/dL (7.7 – 11 mmol/L) indicates pre-diabetes. 

3. A1C test — Gives your blood glucose average over the past three months. It doesn’t require fasting. An A1C of 6.5 percent or above indicates Type 2 diabetes, and 5.7 to 6.4 percent indicates prediabetes.


(Graph from the American Diabetes Association. Used with permission.)

Diabetes is increasing so quickly that at least one-third of Americans born after 2000 are expected to get Type 2 diabetes. Diabetes is the seventh leading cause of death in the U.S.

Ask for a blood sugar test if you have a risk factor for diabetes and compare your result to the ranges on the graph. If you’re in the range for diabetes or pre-diabetes, ask your doctor what you should do. If your doctor doesn’t advise you to do anything, consult another doctor.

“Talk to your doctor,” as pharmaceutical commercials urge us to do, may not be the answer when it comes to a diagnosis of diabetes. Take charge of your own health; it’s in your, and your family’s, interest.

While diabetes complications take years to develop, many people already have complications when diagnosed because they’ve had undiagnosed, untreated diabetes and pre-diabetes for years. And while celebrities rail on TV, “Diabetes doesn’t control me, I control my diabetes,” first, you have to know that you have it.

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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.”


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.





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.


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.

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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.


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.


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?


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.

(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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