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 Dirty Secret About Medical Errors

In my last post, “What Doctors Feel…” I interviewed Dr. Danielle Ofri, an attending physician at Bellevue Hospital and author of four books.

What Doctors Feel

Her latest book, What Doctors Feel is an insightful look at what medical professionals experience emotionally — how under-recognized and unaddressed these feelings are, and how they affect health care providers’ sense of self-worth, performance, and patient care.

In this, part two of my talk with Dr. Ofri, we delve into medical errors and shame.

Riva Greenberg: Why did you want to write about the emotions health professionals experience?

Danielle Ofri: As physicians we see medicine as a science. We think of ourselves, and present ourselves to the public, as rational, evidence-based practitioners. But in truth, most of what we do is based on experience, what we’ve learned from mentors, what we’ve seen, what we feel in our gut, what seems to work.

I think we are far less rational than we tell our patients and ourselves that we are. My experience, and others I’ve witnessed, has taught me that emotions play a large role in how we practice medicine and work with our patients.

RG: Can you give me an example?

DO: Medical errors, unfortunately. There’ve been pushes on many fronts to attack medical error, which of course we must. But how we’ve been going about it addresses only the tip of the iceberg — creating new systems approaches, relabeling medications and enacting legislation changes.

Yet medical errors will keep happening until we bring them out in the open and talk about them. But because making an error is so shameful for a doctor all we want to do is hide it.

In What Doctors Feel I write about one of my most egregious errors. An error that so shamed me it took me 20 years to write about. I was a second-year resident and I didn’t give a patient who was coming out of Diabetic ketoacidosis (DKA) a shot of long-acting insulin. That’s the very thing you’re supposed to do in this situation. Otherwise the patient goes right back into DKA, which is exactly what the patient did.

I called a medical consult in a panic. The senior resident asked me, “Didn’t you give the patient long-acting insulin before you turned off the drip?” I realized I had made a horrible mistake. I couldn’t get a word out of my mouth. “What were you thinking?” she yelled, right there in the middle of the emergency room. My intern was by my side, gunshot wounds were rushing past us, and I was so humiliated and ashamed that all I wanted to do was dive into a hole and die.

The person I thought I was no longer there. Until that moment I thought I was a pretty good doctor. I was studying hard, doing the right thing, but in one moment that whole persona was shot to bits.

As doctors, if we fail, it’s not something outside of us; it is us. We are the error. The shame is so powerful that most doctors will never come forward about an error.

So we can make all the laws we want and change the color of syringes, but until we address the shame, we’ll never get past this problem. We won’t know about the enormous number of hidden medical errors until someone dies from them.

RG: Why is the shame so intense that doctors would risk more errors occurring?

DO: I think the socialization of doctors makes it extremely hard for us to admit a mistake. We tend to pick perfectionists as medical students, knowing that the medical system is not for the faint of heart. Then they’re trained to be perfectionist doctors. There’s no place for a “good enough” doctor. You’re either excellent or terrible.

When I was a medical student, the review of medical errors (the “M&M,” which stands for morbidity and mortality) was combative. At one review, the chief of surgery standing at the lectern yelled out, “Who put that IV in?” Then he made the resident who’d done it stand up in front of 150 people. He made her the “error maker” who kills her patients. After witnessing this humiliation, who would then come forward about a mistake that no one has noticed?

RG: Are reviews still conducted this way?

DO: Now they are more about what lessons we can learn. Also I’ve seen responsibility shift from the individual who made a mistake to the leader of the team so that the whole team bears the error together.

But there’s still room for improvement. I’d like to see the chairman say at a review, “Here’s the error that I made, here’s how I dealt with it, here’s how I handle the shame. It was difficult, but it didn’t destroy me. I’m still here. I am not the error, but I can learn from the error to be a better doctor.” What a difference that would make.

When we are patients, we may feel our doctors don’t see us, yet do we see them? As What Doctors Feel captures so well, the stresses of medical life — from hours of paperwork to fear of lawsuits, shame about mistakes and grieving the death of a patient — the health care system is in need of repair, not just in caring for patients but also caring for providers.

As Ofri said in “What Doctors Feel…” when medical professionals and their patients are supported to go on a journey together, we will all be more successful.

And as I read the final page of What Doctors Feel, a last thought from Ofri resonated. Beyond curing, doctors must also be taught, and supported, to help patients heal. As more and more Americans are, and will be, living with chronic illnesses, medical technologies can only take us so far. It is in truly “caring for” patients — with compassion, empathy and connection — that patients begin to heal.

Danielle Ofri is editor-in-chief of The Bellevue Literary Review (BLR). The BLR accepts submissions and twice a year Bellevue Hospital holds readings for the public.

Originally published in The Huffington Post.

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What Doctors Feel, An Interview with Danielle Ofri

“When I was pregnant with my first child, I had to get an ultrasound and an amnio but I couldn’t find the office. I walked up and down the hallway of my own hospital and I couldn’t find where I needed to go! I was so lost and no one was there to help me. It was so unnerving. Now I think about my own patient who has six tests to do and doesn’t speak English, or is frightened — and then we say, “They’re not compliant.” There’s so much involved in being a patient we don’t think about.” — Dr. Danielle Ofri

Danielle Ofri

(Dr. Danielle Ofri, Photographer Joon Park)


In internist’s Danielle Ofri’s latest book, What Doctors Feel, she explores the emotions doctors shoulder — from feeling an exaggerated sense of responsibility for their patients wellbeing to the shame of medical errors, to how empathy is being trained out of medical students.

Ofri is by accomplishment extraordinary and in her writing humble. She is a 20-year internist at Bellevue Hospital, associate professor of medicine at NYU School of Medicine and editor-in-chief of the Bellevue Literary Review. She traveled extensively in Central and South America to learn Spanish because that’s the native language of most of her immigrant patients, takes cello lessons, is a wife and mother of three, a regular contributor to the New York Times health section and the author of four books.

Ofri’s books explore the “other world” of medicine — emotions. Writing, Ofri told me, “began as a way to walk through some intense experiences and process my feelings.” Her books are also “thank yous” to her patients who have taught her how to, and made her a better, doctor.

Ofri provides a window into her own, and many fellow doctors’, emotional experience caring for patients. Daily we are learning that the quality of connection between patient and physician impacts health more than we realize, as well as patient outcomes. Now we can begin to understand how emotions impact medical professionals’ health, and performance.

Ofri’s unchanging sentiment about empathy can also be found in her second book, Incidental Findings: Lessons From My Patients in the Art of Medicine.

I’ve often wondered, what makes it so difficult for doctors to envision patients beyond their role as sick people? When we gaze at our patients in those awful blue gowns, camped on that ultimate symbol of infirmity, the hospital bed, it seems impossible that they ever had other lives. We can’t imagine them running for the subway, balancing a checkbook, shouting down an underling, changing light bulbs, having sex.

Is our vision clouded because we are so immersed in the world of sickness? Is it because this helps reinforce the power dynamic that has kept patients “in their place” for centuries? Or might it be because, like Mr. Karlin [patient featured in the book] we doctors are scared down to our bones? If we were to see our patients living the lives that we live, then there would be nothing to separate them from us. And then we could easily become them. (Page 93)


I had the pleasure of sitting in Dr. Ofri’s apartment discussing the doctor-patient relationship while sipping a cup of cappuccino she made for me. This is part one of a two-part interview.

What Doctors Feel

Riva Greenberg: As you wrote about in What Doctor’s Feel, why do medical students lose empathy during their training?

Danielle Ofri: I think it’s not about who we select to become doctors. Medical students come in with all the right traits. They’re eager, caring, desperate to help, but then too often come out of medical school jaded. Oddly, their empathy seems to erode just as they’re starting to work with patients in their third year. Empathy doesn’t solve medical problems, but you can’t solve them without it.

RG: Why do they lose empathy?

DO: The first two years of medical school are classroom years and the third and fourth are clinical. When you first get to work with patients, there’s lots of pressure. You’re constantly being tested, disrupted, you’re disoriented and no one’s paying much attention to how you feel.

During your training you typically don’t stay in one place so you have to keep getting used to new patients, nurses, the system, the set-up, the computer. Then, just as you start getting used to things, you’re moved again.

Some schools are changing this by having students stay with patients for a longer period of time both in and outside the hospital. But, clearly, we need to pay closer attention to this crucial time and change the prototypical training. Most of all, perhaps, we have to let students experience forming relationships with their patients and being on a shared journey.

RG: You’ve written about how giving birth to your daughter gave you an appreciation of what it’s like to be a patient. It seems doctors often forget what patients feel, especially in a hospital setting.

DO: Having my baby was a real education, and I was in my very own hospital! First they starve you before you give birth, so when I finally got back to my bed I was famished and thirsty beyond belief. They put this tantalizing frosty pitcher of water on my bedside table — just out of reach! My whole universe became about this pitcher of ice water I couldn’t reach. I even tried to lasso it with my pillow, but that didn’t work.

I didn’t want to page the nurses because I know they’re busy and people are sick, but after several minutes I finally asked someone if someone could come and give me some water. No one came so I broke down and called the nurses station. Five calls later I did what I promised myself I wouldn’t: I pulled rank. “I’m Doctor Ofri,” I barked. “I’m a faculty member here and I need someone to give me a glass of water!”

It made me realize just how vulnerable and dependent patients are. There are so many simple things all of a sudden you can’t do. I remember an incident where a patient had asked me for a Ginger Ale. I thought at the time, I’m juggling 20,000 important things andthis is what you’re asking me for?

Now I know if my patient gets that Ginger Ale it makes all the difference in the world. And not just because they can drink something, but they know they’re going to be taken care of. On rounds now, I’m constantly fussing with the bedside table, moving the phone and the tissue box to where patients can reach them. These are small things, but they can feel so important when you’re sick.

RG: In your first book, Singular Intimacies, you wrote that you asked a patient if she would share with you how you could be a better doctor. Have your patients helped you become a better doctor?

DO: Absolutely. One patient — I called him Mr. Moreno in Medicine in Translation — is an older gentleman I’ve seen since I was an intern. He has diabetes, hypertension and heart disease, and his cardiologist wanted him to get an implantable defibrillator to prevent further problems.

He asked me what to do. I told him to do it since it was a very low-risk procedure. After the operation, however, he got every complication possible. The defibrillator went off at the wrong times, they had to put him on more meds that had side effects, he had impotence and incontinence and his diabetes worsened. It took him a year to recover.

What I learned is even with the limited time we have, you have to find out what patients regard as important to have a good life. I had considered his heart, but not him.

My other patient, Julia — whose story I began in Medicine in Translation, and follow more fully in What Doctors Feel — gave me the gift of sharing a wide-angle lens on her life and taught me to be on a journey with a patient. Now whether I see a patient for years or only a few visits, I’m committed to being on a ride with them.

As our health care system struggles to improve patient care, lifting the veil on what health care providers experience emotionally, should be required study. What Doctors Feel gives us a valuable insider’s view how emotions help and hinder health professionals’ ability to deliver the care they’re charged with.

In part two, Dr. Ofri talks about medical errors and the shame that keeps them ongoing.

Originally published in The Huffington Post.

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Forgotten Dimension of Diabetes Revealed in DAWN2 Study

Would you be surprised to know family members of people with diabetes share similar emotional difficulties as their loved ones? Many health care providers don’t acknowledge the self-blame and anxieties that keep diabetes patients away for years? Enough people report positive experiences with diabetes that it’s leading to a new field of research?

Below are highlights from my talk with Søren Skovlund, global director of patient research and engagement at Novo Nordisk and research director of the company’s DAWN2 (Diabetes Attitudes, Wishes and Needs) study. Above were some of the study’s surprising findings.

Novo Nordisk, the Danish pharmaceutical giant, is one of the world’s largest health care companies and manufacturers of insulin. Its 90-year history has been built on improving the everyday experience and care of people living with diabetes through its services as well as products.

The purpose of the DAWN studies (the first was conducted in 2001) is to help people with diabetes improve their self-management by looking at, and increasing understanding and awareness of, the unmet psycho-social needs of people with diabetes and caregivers. And subsequently, fostering initiatives, policy changes and education to help meet those needs.


Over the weekend at the 73rd Scientific Conference of the American Diabetes Association (ADA), the company released results from their two-year long DAWN2 study.

As an advocate myself of emotional strength and support to self-manage diabetes, oddly, I see an increasing appetite for everything but — for quick and slick fixes.

We salivate over new technology and devices — meters with increasing bells, whistles and download capability, cool iPhone-like looking insulin pumps, greater functionality in mobile health devices, apps and games.

Yet just as in the Hans Christian Andersen tale “The Emperor’s New Clothes,” where no one in the kingdom told the emperor he wasn’t wearing any clothes but for one small child, few acknowledge the emotional component of managing diabetes. Why? It’s murky, messy, ill-defined and hard.

But study after study shows nearly half of the U.S. adult population with diabetes do not achieve the ADA’s recommendation of an A1C less than 7 percent and two-thirds of young people are not meeting their A1C target goal.

Study after study also shows that people do significantly better managing diabetes, and their quality of life improves, with support.

Do we need the best medicines and tools we can get to help us manage diabetes? Absolutely. My point is that you can have access to better medicines and tools and yet do little because you haven’t got the emotional strength, resilience and support to get up every day and manage this chronic condition; you may lack internal resources and/or family, friend, caregiver or peer-support.

Successful diabetes management in my book requires a “MUSE”: Meaningful reason to stay well, Understanding what diabetes is, Skills for lifestyle changes and Emotional strength/support, in addition to medicine and devices.

Dr. Skovlund

Here follow highlights from my talk with Dr. Skovlund (pictured at left).

Key and surprising findings of DAWN2

RG: What are the key findings from both the original DAWN study in 2001 and the DAWN2 study?

Søren Skovlund: Both studies confirm the increased psychological burden that people with diabetes face and how significant that burden is in managing diabetes. Simply, you cannot deal with diabetes without also addressing how it affects your life.

We also learned the differences in perception health professionals and people with diabetes hold about what diabetes is and what the challenges are. And, I’m sure you won’t be surprised to know, there’s a communication gap between doctor and patient.

While health professionals report that they ask their patients regularly about how diabetes affects their life, few people with diabetes report that their care team asks them this question or involves them in any other ways, including planning their own treatment.

The good news, however, is we saw that the more people with diabetes feel that those helping them listen to them, the better they do with their diabetes.

One key finding in the first DAWN study that resonated particularly with clinical professionals was what keeps people with Type 2 diabetes from seeking and accepting treatment. Across all countries, fear and denial often keep people from seeking treatment for years. Then when offered treatment they often change doctors or delay.

RG: What other surprises were revealed in the new study?

SS: The fact that there’s a profound emotional burden on family members of a loved one with diabetes, yet so very little is known about it or done about it. We saw this for the first time in DAWN2 because we were evaluating spouses’ and other cohabitating adults’ experience on a larger scale.

DAWN2 shows us that this is an important aspect to address, particularly since this burden can be reduced.

Positive stories yield a new research field 
On the positive side, we were surprised by the pocketful of positive, meaningful experiences a quarter to a third of people related about life with diabetes. We have thousands of hopeful, encouraging stories of meaning and inspiration.

DAWN2 researchers are now analyzing and coding thousands of personal stories we collected from four continents to see where people find positive images and turning points in living with diabetes, and we’re very excited about this as a new area of research.

If we can understand how people climb up their mountain of challenges, then maybe we can use these stories therapeutically. So DAWN2 may help us not just look at the burden of diabetes but also how we meet its challenges. And now we have a rich database to offer the global community from which to establish a research field. One we hope may also contribute to other chronic diseases.

RG: How open are health care professionals to changing their behavior?

SS: From our first study to DAWN2, we see greater openness and readiness on the part of healthcare professionals to partner with their patients. There’s a marked positive shift toward valuing patient empowerment and recognizing that the person with diabetes is the expert on his condition just as the professional is an expert in providing support, coaching and knowledge.

We also see the need for people with Type 2 diabetes, particularly, to speak up and get more actively engaged. Many people with Type 2 can be symptom free for years, and since few are cared for by diabetes specialists, they tend not to see their condition as serious or ask questions. Yet while diabetes is clearly serious, with information, hope, reassurance from their doctors, and a team effort, people can live a good and full life with diabetes.

So we need to find effective ways to get people with diabetes engaged, sooner, and sensitize and equip health professionals to respond.

Next steps
RG: How will the results of DAWN2 be used?

SS: Our next steps are for the national DAWN2 committees to begin to define concrete initiatives relative to emotional support, education and patient involvement that will help improve glycemic control and treatment outcomes in all our participating countries.

Over this year and next, we’ll also be ensuring that the study results are available to scientific publications and then publicly so anyone can apply to the committee to research the data and learn more.

For my 41 years living with diabetes, the last 10 working in the field, I see all too often the emotional toll diabetes extracts. My first book, The ABCs Of Loving Yourself With Diabetes, was expressly written to help readers develop greater emotional strength and resilience to better manage their care.

If you are having difficulty managing your diabetes look for sources of support — family, friends, social media sites, a coach or counselor, and tell your health care team.

Note: In full disclosure, Novo Nordisk has not asked me to write this blog. Personally, I applaud their investment in bringing greater awareness to the psycho-social dimension of living with, and managing, diabetes.

Originally published in The Huffington Post.

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The Lie That’s Killing Us: Pre-Diabetes

Pre-diabetes is a lie. Pre-diabetes is Stage 1 diabetes. And I’m taking a stand now advocating that we call it what it is.

Pre-diabetes doesn’t exist. And the lie we tell that it does does incredible harm. It stops the nearly 80 million Americans we say have it from making the lifestyle changes necessary to prevent advanced Type 2 diabetes. Pre-diabetes is in truth the first stage of diabetes.

My proposition is that recognizing pre-diabetes as “Stage 1” Type 2 diabetes will get millions more people to take action to stop their diabetes from progressing.

About 80 million people is roughly the populations of California, Texas and New York combined. The International Diabetes Federation reports that in 2011, 280 million people worldwide were glucose intolerant (pre-diabetic). In only 17 years, 398 million people will be.

We clearly need a new strategy. The 25-year campaign the American Diabetes Association has waged to raise awareness of diabetes and pre-diabetes and urge preventive and healthful behaviors has been sadly, and enormously, unsuccessful. 


Pre-Diabetes Is Stage 1 Diabetes

Pre-diabetes literally says you don’t have diabetes — but you do. Your blood sugars are higher than normal, a defining characteristic of diabetes.

study performed at Crittenton Hospital Medical Center in Detroit showed 36 percent of people with pre-diabetes already had coronary artery disease, similar to the 42 percent with Type 2 diabetes and strikingly higher than the 21 percent with normal blood sugars. Higher than normal glucose levels impact hypertension (high blood pressure) and lipids like cholesterol and triglycerides. Plus, most people with pre-diabetes show signs of retinopathy (eye damage), nephropathy (kidney damage) and neuropathy (nerve damage), all diabetes complications.

Lynda Sardeson, a certified diabetes educator and registered nurse, wrote to me in an email, “We began diagnosing pre-diabetes and put it in practice guidelines around 2004 to try and ‘catch’ those with diabetes earlier to prevent more complications.”

Exactly: “To catch those with diabetes earlier…” So let’s call pre-diabetes what it is: Stage 1 diabetes. Why? Because it is. Because health care providers need to take it seriously and not soft pedal it. Because policy makers must decrease the health care costs of diabetes now poised to bankrupt us. Costs have risen $70 billion in the past five years with no end in sight. Last year the U.S. spent $245 billion health care dollars on diabetes — the total GDP of Israel.

And, because for patients, hearing you have Stage 1 diabetes, like hearing you have Stage 1 cancer, has power and hope in it. The power of alarm to motivate behavior change — and the hope of remission if you do.


Four Stages of Type 2 Diabetes

Since Type 2 diabetes is progressive for most people, it can be characterized like cancer, chronic kidney disease and Parkinson’s as having stages.

Stage 1 — The body’s ability to regulate blood sugar is impaired and blood sugar is higher than normal. One may already have signs of diabetes complications. Treatment includes maintaining healthy body weight, eating healthfully, being physically active and possibly adding medication. With proper treatment one may go into remission, or be able to prevent or delay moving to Stage 2. 

Stage 2 — The body’s ability to produce and use insulin is further impaired than in Stage 1.Complications are often present, particularly those that affect the circulatory and nervous systems. Metabolic syndrome is common. Poor management leads to increased severity of complications and reduced life expectancy.

Stage 3 — Patients exhibit several and/or severe diabetic complications including neuropathy, vision loss, foot ulcers, amputation, blindness, kidney disease and heart disease. Quality of life is reduced and lifespan is shortened. Hospitalizations may be frequent.

Stage 4 — Death due to diabetes-related cause. Diabetes is the seventh leading cause of death in the U.S. Two-thirds of people die from heart disease or stroke.


Current Diagnosis Criteria

Clinically, you are diagnosed with “pre-diabetes” when your fasting blood sugar is between 100 (5.5 mmol/l) and 125 mg/dl (6.9 mmol/l). You are diagnosed with Type 2 diabetes when your blood sugar is 126 mg/dl (7 mmol/l) and higher. Who are we kidding when one point stands between pre-diabetes and diabetes on tests that often need to be taken more than once? 

I’m not being coy about a name change. While Shakespeare’s Juliet said, “What’s in a name, that which we call a rose by any other name would smell as sweet.” There’s enormous leverage in a name to either motivate action or not.

Currently more than one-fourth of our nation’s population are standing idly, waiting to board the train to Stage 2 Type 2 diabetes. There, many will suffer the life-crippling complications of diabetes and die prematurely, as people with Type 2 diabetes do every day. Diabetes kills more Americans than breast cancer and AIDS combined.


Low Awareness of Pre-Diabetes

Approximately 1 in 3 U.S. adults age 20 and older have pre-diabetes. Yet 89 percent are unaware of it, according to Doctor YanFeng Li, Division of Diabetes Translation, Centers for Disease Control and Prevention. 

Dr. Li and her colleagues concluded in their study that the critical first step to encourage people with pre-diabetes to make healthy lifestyle changes to prevent Type 2 diabetes is improving awareness of pre-diabetes.

I disagree. I believe the first critical step is a name change and a change in our national conversation.

If you are a health care provider, tell your next patient with pre-diabetes that he has Stage 1 diabetes. See what happens. I’m thinking he’ll look up and listen hard. Let him know he’s at the fork in the road. “Good day, Mr. Gottlieb, I have some bad news and some good news. The bad news is you have Stage 1 Type 2 diabetes. If you do nothing now you are working your way toward Stage 2. However, the good news is together we can work at reversing it, so you may never go on to Stage 2. In the worst case scenario we may be able to delay it for years.” 


The Grinding Slowness of Change

The results of the Diabetes Prevention Program (DPP) , heralded as a landmark study, were published in 2002 yet little has changed. The DPP proved that with a modest weight loss, about 7 percent of body weight (for most people about 15 pounds) and 30 minutes of moderate activity five days a week, people with pre-diabetes reduced their chances of developing Type 2 diabetes by 58 percent. Participants over age 60 reduced their risk by 71 percent. 

Newer research shows that by treating people with “pre-diabetes” more aggressively, with lifestyle changes and medication, they can further minimize their chances of, or further delay, getting Type 2 diabetes. 

It’s clear: We are failing miserably at awareness-raising, behavioral change efforts and containment of health costs, says diabetes advocate David Edelman, founder of DiabetesDaily.com. In his post, “Diabetes Alert Day, Why Do Cancer & AIDS Get More Support Than Diabetes?” he writes, “Why is diabetes tucked into the closet, door closed, and safely ignored? How many millions of lives will we sacrifice and how many billions of dollars will we waste before we act? “

We’re not setting any precedent changing the diagnosis of pre-diabetes to Stage 1. We renamed “juvenile diabetes” Type 1 diabetes because adults get Type 1 diabetes. We renamed “adult-onset diabetes” Type 2 diabetes because now children get Type 2 diabetes.

So I’m calling on health care professionals and the American Diabetes Association, the World Health Organization, the Centers for Disease Control and Prevention, the International Diabetes Federation and our legislators to do what they want people with “pre-diabetes” to do — take action.

Almost 10 years ago we called out “pre-diabetes.” Now call out what it is — “Stage 1” Type 2 diabetes — and halt the killing.

What do you think?

Are we disempowering people telling them they have pre-diabetes?

Would you do something different hearing you have Stage 1 diabetes than pre-diabetes? 

Originally published in The Huffington Post.


Turning Diabetes Over to the Bionic Pancreas

I considered titling this “Anna Floreen Was Diabetes-Free for 5 Days,” because she was and now she’s not. And I’m curious what that transition has been like — picking up your chronic illness again after you dropped it from your shoulders and walked off into the sunshine, so to speak.

April 4, 5, 6, 7 and 8, days I’m sure Anna Floreen will never forget, she was effectively “cured” of her Type 1 diabetes (T1D). Anna participated in the Massachusetts General Hospital Beacon-Hill study.

She was among approximately 30 T1D patients testing the performance of the “bionic pancreas” outside the hospital. She was, however, hooked up to an IV monitor overnight, restricted to a three-mile radius and had a nurse by her side at all times.

Anna Floreen wearing the bionic pancreas

Anna’s had type 1 diabetes for 24 years, since she was 6 years old. Yet that early week in April, she didn’t. She didn’t have to figure out how many carbohydrates were in every morsel of food she ate and how much insulin she needed to take to cover it.

She didn’t have to guess if her workout at the gym or her walk to work would cause her blood sugar to go too low, and then wonder whether or not to go or prepare for possible low blood sugar.

She didn’t have to poke her finger 10 times a day to see her blood sugar number. That’s 50 pricks she didn’t have to feel. Or worry as she fell asleep that she might get a severe low blood sugar during the night and not wake up.

That is what makes T1D so relentless and dangerous. Throughout the day, every day, one has to think and act like a normal functioning pancreas, the organ that controls blood sugar. That is also what makes this study exciting and hopeful.

The Bionic Pancreas

The bionic pancreas consists of three pieces of hardware. There’s an iPhone with an app that contains the system’s control software and algorithm and a continuous glucose monitor (CGM).

The CGM’s sensor/transmitter, worn under the skin, streams glucose (blood sugar) data to two connected infusion pumps. One delivers insulin to lower blood sugar and one delivers glucagon to raise it. Based on glucose levels transmitted every five minutes from the CGM, the app determines and dispatches how much insulin or glucagon should be delivered to maintain ideal blood sugar levels.

If Anna’s blood sugar began to veer toward hypoglycemia (blood sugar below 70 mg/dl (3.8 mmol/l) — the dreaded side effect of insulin that can cause coma and even death — the pump containing glucagon released some to raise Anna’s blood sugar. If Anna’s blood sugar began rising too high, the insulin pump sent a precise amount of insulin into Anna’s blood stream to curb the rise and bring it back down into the normal range between 80 mg/dl (4.4 mmol/l) and 120 mg/dl (6.6 mmol/l).

The bionic pancreas and its algorithm are the genius of biomedical engineer Edward Damiano. Damiano is also the father of David, who got Type 1 diabetes at 11 months. That’s when he began working on an automated “closed loop” system that would regulate blood sugar and relieve patients of the daily decisions and actions they must now perform.


Anna’s Experience

Anna blogged each of the five days she wore the bionic pancreas sharing her experience with the thousands of visitors to the Type 1 diabetes online community, Glu. Anna works as Glu’s Community Outreach Manager, and I recommend you read her posts. You will see how far technology has taken us.

I interviewed Anna five days after her trial participation wanting to know a bit more about the emotions she’d expressed, and also what it is like to suddenly be disease-free and then ill again.

Anna wrote in her first post, “The best part so far has been the lack of worry, emotional guilt, and shame that accompany all of us too often when it comes to decision-making between me and my ‘external organ’ pump that I’ve had a solid relationship with for over a decade.”

Anna told me over the phone, “The 24/7 of diabetes eats away at your mental aptitude and spirit. I would wear 10 sites on my body if it meant I didn’t have to deal with the constant thinking, and the embarrassment, shame and guilt that accompanies diabetes each day. I stare at my CGM and base my self-worth on a trending number graph! How crappy is that, and people don’t get it.”

“During the trial I felt so free. My brain was free of decision-making and dreading the consequences of my decisions. No more thinking should I have taken the subway instead of walking to prevent that low? Should I not have had that extra chocolate kiss at the holiday party? The lack of worry was amazing.”

What most people don’t know about T1D is the emotional stress of all day trying to keep your blood sugar within a narrow, prescribed, acceptable band. Anna tells people it’s like stepping on a scale 24 hours a day. The moment before you do, you feel the shame and guilt of maybe discovering you gained weight. She said many people with Type 1 diabetes feel that 24 hours a day.

As for what it’s like to lay down your disease and pick it up again ,Anna indeed went through bionic pancreas withdrawal.

“For days I was angry at diabetes again,” Anna said. “I thought I would be much more motivated to take care of my diabetes, knowing the potential for it to be in phenomenal control. But it was like I was diagnosed all over again. I didn’t want to do anything.”

“During the trial everything was done for me,” said Anna. “So much so even the nurse asked me, ‘Do you want to prick your finger or do you want me to do it for you?’ You do it, I said. Imagine having someone prick your finger being a treat!”

The outpouring of support from the online diabetes community, having so many families and friends thank Anna for what she did and knowing she’s provided important data from the trial motivated Anna to take care of her diabetes again.

She’s also inspired by having experienced something she never thought she would, the day she didn’t have to worry about her diabetes. She hopes the trial inspires others to trust that research and technology arebringing us closer to a cure.


Defining the Cure

One of the last things Anna shared both surprised and didn’t surprise me. “I feel like I’ll always have diabetes even if there is a cure,” Anna said. “Just like during the first meal of the trial when I reached down to grab my pump and then realized it wasn’t there. Diabetes has been my life. My mindset, that diabetes perspective whatever it is, will never go away. Even if there is a cure, I don’t think I will ever feel mentally cured.”

Having lived with T1D for 41 years I feel the same. I also feel the same as Anna that I’ll be happy to give up the rest. The constant carbohydrate and insulin calculations, the running tape of what’s my blood sugar now, and questioning is it safe to simply go take a walk? 

It’s a brave thing Anna did. That everyone who participates in a clinical trial does. Not just risking that the device you’re testing may fail, but that it will succeed. That you will know freedom and then have to give it back.

Would you give up your diabetes, cancer, AIDS, Parkinson’s, rheumatoid arthritis only to have it back again after being free?

Damiano’s hope is that the bionic pancreas will be perfected and available by 2017, the year his son will be entering college. I’m sure there are about 3 million people who are now hoping right along with him.


Next Steps

Extensive testing of the bionic pancreas’ software-controlled system has already been done on diabetic pigs and in three successful in-hospital studies of adults and adolescents over the past 4.5 years.

The Food and Drug Administration has given Damiano and his research associates the green light to carry out the first of three longer-duration outpatient studies over the next 18 months. Participants will have less nursing supervision and greater freedom of movement.

Originally published in The Huffington Post.


5 Healthiest and 5 Unhealthiest Packaged Foods (According to FoodFacts.com)

Cream powder, partially hydrogenated soybean oil (trans fat), “flavors,” saturated fats, sodium, controversial ingredients and added sugar. That was dinner for thousands, maybe millions, of babies and toddlers last night who ate Gerber Graduates Lil’ Meals Pasta Shells and Cheese.

Most of us know the healthiest foods are natural and unprocessed like fruits, vegetables, nuts, seeds and whole grains. Yet we spend a great deal of our nutrition equity chowing down on chemicals disguised as food. And unaware, feeding them to our children. 

So I was excited to find this user-friendly food rating website FoodFacts.com. FoodFacts can help you and your family eat more healthfully by knowing if a food has excessive sugar, fat, salt or harmful chemicals. 


FoodFacts.com reviews more than 100,000 popular packaged, non-packaged and fast foods and 20,000 ingredients. Each product or food is graded from a head-of-the-class “A” to a failing “F” based on the quality of ingredients andwhether a food offers any nutritional value.

There’s also a full list of ingredients, nutrition facts panel and bulleted good news/bad news report card for each product. Taste is not considered.

Stanley Rak, FoodFacts’ founder and sole funder, started the site after he was feeding his 3-year-old grandson and noticed the food was sticking to his fingers. “I thought what’s in this?” Rak told me. “So I looked at the label on the jar and couldn’t pronounce most of the ingredients!” Rak then went home and looked at the ingredients in everything in his cupboard. That was the beginning of FoodFacts.com.


I marvel at and support the initiative of one individual doing what he can to protect all of our health. Rak’s aim is to help people eat more nutritiously, eat safely if they have food allergies or dietary restrictions, and create a community where members (it’s free) can share their food findings and experiences.

Rak also hopes FoodFacts.com will influence manufacturers to produce healthier products. For instance, manufacturers can still hide ingredients. “They don’t have to list trans fat on the package if it’s under half a percent,” Rak told me, “but you’ll see it on FoodFacts.” Paid for only by Rak, FoodFacts is entirely transparent and not supported by any advertising.

“Sometimes my neighbors are afraid to invite me to dinner,” said Rak chuckling, but he’s always adding to the site. A recent addition goes back to its roots — a “Baby Nutrition, Allergen and Score Guide” to help new mothers provide their babies nutritious products. “Because,” Rak says, “the abundance of sugar, including hidden sugars, in baby foods is where our lifelong struggle with obesity and nutrition begins.”


5 Healthier Foods and Their Scores, as Rated by FoodFacts.com


  1. Dreamfields Pasta Linguine Low Carb – (A)Low in calories, fat and sodium, Dreamfields Pasta packs a nutritional punch, providing 40 percent of our folic acid and thiamin requirements, as well as riboflavin, niacin and iron.
  2. Little Duck Organics Blueberry Apple Tiny Fruits (A) – Organic freeze-dried apples and blueberries, this product is low in calories, saturated fat, cholesterol, sodium, contains no controversial ingredients and is an excellent source of vitamins A and C.
  3. Beech Nut Good Morning Oatmeal & Mixed Fruit Cereal (A) – A baby food product with only good news! Low in calories, saturated fat, cholesterol, sodium and contains no controversial ingredients. It is also an excellent source of twelve vitamins and minerals.
  4. Bumble Bee Chunk White in Water Tuna Albacore (A-) – Low in calories, saturated fat, cholesterol, contains no controversial ingredients and contains naturally-occurring vitamins and minerals, and is an excellent source of niacin.
  5. Triscuit Original Low Sodium Whole Wheat Crackers (B+) – Low sodium, low in calories and no controversial ingredients, makes Triscuit a great snack. It doesn’t score an “A” because it’s also low in vitamins and minerals.


5 Unhealthy Foods and Their Scores, as rated by FoodFacts.com


  1. Hot Pockets Beef and Cheddar Sandwiches (F) – The entire line of Hot Pockets products gets an “F.” This product has multiple controversial ingredients, there is little “good” in this product and it displays a hidden form of MSG. Hot Pockets products have one of the longest lists of ingredients, up to 160!
  2. MorningStar Farms Veggie Chik’n Nuggets (F) – These vegetarian imitation chicken nuggets are high in sodium and contain the controversial ingredients hydrolyzed corn gluten and yeast extract (both are nicknames for MSG). The product also provides little vitamin content. 
  3. Arby’s All American Classic Roastburger (F) – Equal parts good and bad — low in calories, cholesterol and contains Fiber, Vitamin C and Iron. Yet highin saturated fat, sodium, contains a moderate amount of added sugar and several controversial ingredients.
  4. Propel Zero Berry Flavored Fitness Water (D+) – This product has no calories, fat or sugars, but gets a poor grade due to its very controversial ingredients, like acesulfame potassium, potassium sorbate and other preservatives. A great example of a product that looks healthy based on the nutrition label, until you read the ingredients. Plus, researchers are linking 1 in 10 deaths in the U.S. to overconsumption of salt, and this flavored water has over 160 mg of sodium!
  5. Apple and Eve Grover’s No Sugar Added White Grape Juice (D) – While most believe 100 percent fruit juice is healthy, it’s mostly sugar. A single eight-ounce serving of this grape juice contains 38 grams of sugar and 130 calories. Comparatively, Coca-Cola contains 27 grams of sugar. This product also contains “natural flavors,” a label food manufacturers are permitted to use for any number of chemicals that they don’t have to disclose. This usually indicates that the real thing (often fruit) has been left out.


Originally published in The Huffington Post


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Stop Eating So Many Carbs — Carbs Make You Fat

There’s been a weighty debate in this country for at least a decade: What makes us fat, carbohydrates or fat?

After years of following alternative weight loss thinkers for my personal knowledge and recently to help people normalize their weight and maximize their health, in my new book Diabetes Dos & How-Tos, I have experienced the answer. My clothes are hanging off of me.

I lost 10 pounds in three months without trying. My goal wasn’t to lose weight. It was not to gain it. Last September I had badly sprained my ankle and was suddenly on crutches and then in a boot cast for three months.

Unable to do my daily hour power walk, I decided I would eat a little less so the scale didn’t climb up. Having been reading about the paleo diet — lean meat, fish, fowl, vegetables, eggs, fruit, high-quality fats, nuts, seeds, no grain or dairy — I decided to follow a modified version: Reduce the carbs in my already low-carb eating plan and add more healthy fat like nuts, seeds, avocados, flax and coconut oil.

Before I go any farther, I have to say what any responsible dispenser of weight and nutrition advice should say: It may be different for you. Our bodies are all different, and there are many complex metabolic processes at play, particularly if you’ve been on a cycle of losing and gaining weight.

But I believe for many people, if you reduce the refined carbohydrates in your diet — white bread, bagels, pasta, muffins, scones, cold breakfast cereal, chips, sweets, soda and sweetened drinks — and add more healthy fats — nuts, seeds, avocados, fatty fish like salmon, tuna and sardines, olives, olive, flax and coconut oil — you’ll likely lose some weight, stop the cycle of ravenous hunger, feel more satiated, and have more energy and more stable blood sugars.

It’s true 1 gram of fat contains 9 calories, while 1 gram of carbohydrate contains 4 calories. It’s also counter-intuitive to think carbs make us fat more than fat. But as Gary Taubes, author of Why We Get Fatand Good Calories, Bad Calories, says in his 2007 article, “Good Calories, Bad Calories,” obesity is not due just to calories but the quality of those calories. And it’s about how fat and carbs get used in our body.

Storing Carbs as Fat

Taubes and other low-carb enthusiasts say when we eat more carbohydrates than we burn for energy, our body ends up storing them as fat, and that this is the primary cause of weight gain and related ills.

It works like this: Refined carbohydrates raise blood sugar. Your body then produces extra insulin to bring your blood sugar down. Insulin is a fat storage hormone. With more circulating insulin in your bloodstream, your body converts the carbohydrates to fat and stores them — on your buttocks, thighs, abdomen and hips. If you have diabetes and don’t produce sufficient insulin, you either take more insulin, or medication that releases more insulin, to cover the carbs.

Dr. Richard Bernstein, a low-carb advocate and diabetologist who wrote the classic book Diabetes Solution, advocates low-carb eating for glycemic control. He also says, as do low-carb advocates, that high-quality fats, including some saturated fat from animals, is healthy and not the cause of obesity or heart disease. This is particularly significant for people with Type 2 diabetes, since most people with Type 2 diabetes are overweight and two-thirds die of cardiovascular disease.

Sugar-Burners vs. Fat-Burners

When I interviewed Mark Sisson last year, paleo advocate and author of the Primal Blueprint, he explained another factor at play for weight gain and loss. People who eat a lot of carbohydrates he calls “sugar-burners.” They burn carbs for energy and need a steady supply of carbs to keep their energy up. Always relying on carbs for energy, they have difficulty accessing and burning their stored fat.

When we eat less carbs, however, said Sisson, people become “fat-burners.” The body first goes for carbs to burn for fuel, but after it burns the small amount of carbohydrates eaten, primarily from vegetables, it then accesses and burns stored body fat, which leads to weight loss.

Benefits of Healthy Fat

While we’ve been taught to think that fat is our enemy, the body needs healthy fats. They help us absorb vitamins, minerals, and antioxidants from other foods. They supply energy, help us build cell membranes, and strengthen our digestive, nervous and immune systems. Healthy fats can also reduce the risk of heart disease, certain cancers, obesity, arthritis, Alzheimer’s, depression, joint pain and inflammation.

Plus, fat and complex carbohydrate foods — like barley, whole oats, popcorn, bulgur, millet, quinoa, sweet potatoes, brown rice, lentils, quinoa, beans and buckwheat — satisfy our appetite, so we tend to eat less. Refined carbohydrate foods — your sweets and chips — tend to make us more hungry, so we tend to eat more.

How I Changed My Diet

Dietitians will tell you not to eliminate any entire food group from your diet, and I didn’t. But instead of eating oatmeal every morning, I ate it four times a week. The other mornings I ate two eggs with a chicken sausage, or cottage cheese with peanut butter or tofu, fruit and nuts.

Instead of putting beans on my dinner plate every night I did it two nights a week and added more non-starchy vegetables like broccoli and cauliflower the other nights.

I changed my lunch from a salad with falafel and hummus, mostly carbs, to a salad of steamed vegetables, lettuce, tomatoes, grilled chicken, a crumble of feta cheese and two healthy slices of avocado with flax oil, herbs, and red wine vinegar.

I saute in coconut oil now and snack during the day on a handful of nuts, and at night on a small bowl of sunflower seeds and a piece or two of premium quality dark chocolate.

I know it’s hard to believe carbs can make us fatter than fat. It also defies the seemingly-healthy labeling on food products. But as you’re reaching for that “no-fat” yogurt, “low-fat” bread, “fat-free” cookie package, look around you. Are most people fat or slim?

When foods have fat removed, they usually have more sugar added to replace the flavor fat supplies. If you accept that an over abundance of carbs turns into fat in your body, you’re not doing yourself any favor to reach for higher-carb, fat-free foods.

The food changes I’ve made over the past six months, for me, were not gigantic. I already ate a low-carb diet. But eating fewer carbs, which spontaneously led to consuming less calories, along with more protein and healthy fat, the weight began to slide off me. It has also stayed off me because this is how I eat now. And, I’m not hungry.

As for the initial three months I went without exercising, I saw while my daily one hour power-walk is a great way to maintain my weight and my health, it didn’t really contribute to weight loss.

I’m not advocating a ban on carbs as a quick weight loss scheme. I don’t believe in quick weight loss schemes or diets. But I am convinced, as a nation, we eat too many carbs, especially refined carbs, more unhealthy fats than healthy fats, and that food marketers are selling us a bill of goods making us think fat is bad while hooking us on poor-quality carbs.

For me, the proof is hanging all around me in the clothes in my closet that are a size or two too big.

Originally published in The Huffington Post

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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.

Originally published on Huffington Post.

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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.

Originally published on Huffington Post.

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