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

Breakthrough Diabetes Trial Captured on Film: The Human Trial


Nearly 18 months into a stem cell trial to cure type 1 diabetes, there’s reason to be cautiously excited. ViaCyte, a leader in stem cell therapies for diabetes, is conducting the first human trial of its kind. Husband and wife filmmakers, Lisa Hepner and Guy Mossman, (featured this month in Diabetes Forecast) are making the first documentary of its kind. They’re covering the trial results as they happenin real time.

The film, The Human Trial, shows the formidable obstacles and grinding effort of cure research, the complexity of the disease and the science, what it takes to harvest cells, regulatory rules and the $5 billion plus it typically takes to bring a drug to market.

Almost everyone with type 1 diabetes heard when they were diagnosed, “There will be a cure in five to ten years.” For me that was forty-four years ago. Why do westill not have a cure…

  • Nearly a century after the discovery of insulin?
  • Given more than 1.25 million American children and adults have type 1 diabetes? With nearly 80,000 newly diagnosed young people every year?
  • With type 1 and type 2 diabetes only rising? 30 million Americans and 415,000,000 people globally suffering with both types of diabetes
  • Given diabetes will be a 561 billion dollar global health expenditure by 2030?
  • When it’s the seventh leading cause of death?

Why does a cure take so long and should we still be hoping? Hepner and Mossman think we should. They also want us to understand cure research and why it’s such a laborious and intricate process.

The Human Trial is following one research team and a handful of trial patients as they move from the lab through the first two years of the Phase 1/2 clinical trial. For Hepner, who has had type 1 diabetes for twenty five years, making this film is personal.

“While I’m hoping this trial may be the breakthrough we need for a cure,” Hepner told me, ”I also want people with diabetes, particularly type 1 diabetes, not to give up. I’d like them to understand the Herculean efforts behind most cure research and to know that they have good reason to keep hoping.”

The Trial

At the center of The Human Trial is San-Diego based biotech company, ViaCyte Inc. In partnership with the University of California, San Diego and the University of Alberta, ViaCyte has received FDA approval to test only the fourth embryonic stem cell derived product in the world.

Part of the reason the directors are excited about this trial is ViaCyte is theoretically growing enough insulin-producing cells – from a single donated embryo leftover from in vitro fertilization – to treat every patient on the face of the earth with type 1 diabetes.

This could also benefit anyone who takes insulin, including those with type 2 diabetes.

The patients participating in the Phase 1/2 portion of the trial received a less than therapeutic dose of the stem-cell derived therapy. The cells were implanted in their body in two semi-permeable encapsulation pouches. The pouch is about half the size of a credit card as seen below.


The pouch allows the body’s nutrients to enter and feed the cells while it protects them from being destroyed by the patient’s immune system. Once matured, the cells are designed to secrete insulin and other hormones necessary to control blood glucose levels. Implantation of these cells in animals has already proved successful in controlling blood sugar. This is the first time it’s being tried in humans.

Once the product proves safe, researchers will seek recommendations to proceed to the therapeutic phase of the trail – again in people with type 1 diabetes.

Typically islet cell transplantation requires the recipient to take a lifetime of immune suppressant drugs. The goal of this trial is to eliminate the need for such drugs. Typically there are also not enough cells to harvest, and transplanted cells begin to die within a few years. ViaCyte’s trial, with just one stem cell line, has the capacity to yield an unending amount of insulin-producing beta cells.

The Film

The idea for the film came to the husband/wife team the morning Hepner woke from a dreadful hypoglycemic event during the night. “It was so clear to me. Unless you or a loved one has type 1 diabetes, you don’t know how tough and scary it is to live with it. We all look healthy on the outside.

“So Guy and I brainstormed on how best we could tell the story of diabetes and we landed on doing a film about the quest to cure it. We wanted to understand why there hasn’t been a cure.”

Hepner says, and I agree, funding for a cure for type 1 diabetes suffers from how hidden and misunderstood the condition is from and by the public. “People don’t understand the physical, emotional and financial costs of type 1 diabetes,” says Hepner. “Perhaps if we walked around with IV drips that give us insulin there’d be more concern about the disease. Instead, our essential diabetes devices are getting smaller and less visible.”

I too hope the film, like the trial, will help accelerate a cure. I also believe it will help alleviate what so many of us also bear. What I call “Hope-Fatigue.” The exhaustion from years and decades of wishing for, praying for, hoping for, and being promised, a cure.

Note: To donate to The Human Trial and keep the cameras rolling please visit the film’s website. You can also purchase an OBEY® Awareness T-shirt featuring Shepard Fairey’s artwork. 100% of the profits support the making of the film. Photos courtesy of The Human Trial.

Originally published in The Huffington Post.

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Best breakfasts for diabetes

A month ago I was traveling through Europe and my downfall is my love for muesli. But muesli has a million carbs. My very kind sister-in-law, who lives in The Netherlands, found a low carb muesli in the “health food” section of her supermarket, and I feasted. I decided, why not throw together a similar mix once home.

Best breakfasts for diabetes with-milk

Above my cereal all prepared. This recipe will look like a lot of work – it’s not. It just takes a few minutes preparation because I throw a lot of stuff in. But there is no cooking, baking, etc. You can also mix up a big batch at the beginning of the week; I happen to like preparing it fresh as a morning ritual. Here’s the mix before the milk is added.

Best breakfasts for diabetes pre-milk

Here are the ingredients. Know that these ingredients can be changed up according to your tastes, so you can certainly leave some out or change the fruits. Just bear in mind, it’s low carb because what goes into your bowl is mostly seeds and nuts.

Best breakfasts for diabetes - ingredients

Amounts are not exact, but you’ll get the idea:

• spoonful of chia seeds

• spoonful of flaxseed meal (ground flax seeds)

• spoonful of hemp seeds

• spoonful of uncooked rolled oats

• handful of mix of pumpkin and sunflower seeds and poppy seeds

• handful of nuts

• few berries and one prune cut into little pieces

• enough salt for flavor

• 1 packet stevia

• tsp cinnamon

As for the milk, I will often add a bit of half and half, then Almond milk and then some water just to dilute it. The chia and flax seeds will want to soak up the liquid. I find this cold and crunchy cereal just perfect for a summer day – and so anti-oxidant, omega-3 nutritious.

Best breakfasts for diabetes - Flaxseed Muffin

Above is my other great low carb breakfast, a flax seed muffin, which I’m sure I’ll revert back to when the temperature drops. Recipe here.


Diabetes Complications: Do You See Them Coming?

Riva Greenberg

Riva Greenberg

There’s a strange phenomena that comes with living with diabetes. Perhaps the same as living with any illness or condition that slowly, gradually, over time, progresses. So slowly we don’t see it progressing; I certainly don’t feel it progressing.

Some complications progress whether we take care of diabetes or not. In the background, slowly during the ordinary days when I get up, work at my computer, meet friends for lunch, walk through the city, laugh through dinner out with my husband.

If I look back I know exactly when my ophthalmologist told me she saw the first sign of an eye problem – a slow growing cataract when I was 52. The first sign, after 34 years of being so relieved I had no eye problems, now I did. Now I have another – I have two slow growing cataracts.

I remember exactly when I got my first, of my two, frozen shoulders. It was the day I got off the plane after living and working in Tokyo for six years. Day after day my shoulder became more limited in its movement and more painful.

For a year I went from my endocrinologist to my family doctor to an occupational therapist, even a chiropractor recommended to me while I was visiting friends in San Francisco. But it wasn’t until my mother told me to go to her chiropractor that my shoulder was properly diagnosed and treated.

My second frozen shoulder fifteen years later needed an in-hospital operation. The procedure successful. I asked if this could recur. My ace surgeon said, “Maybe, in about fifteen years.”

I consider myself lucky that after 44 years of living with type 1 diabetes I have relatively little to show for it. Yet, when I sat in the ear doctor’s office eight years ago and heard him say I had a significant hearing loss I could only cry and think diabetes. I cried all week.

When I notice my calves cramping more than usual, as I have the past few weeks, I can only think neuropathy. And noticing for the first time an odd pulsing in my forearm, like a string being pulled on my nerves, and then it subsides but never really goes away, I think, diabetes?

Now you see me, now you don’t, diabetes. You are there and not there. I can forget you, but never as long as for a day.

And while I know I’m better off working to keep my diabetes well managed to have my best chance to keep complications at bay – and I am very positive most of the time, even seeing gifts I’ve gained from having diabetes – I also know I cannot control anything. 

Least of all whether complications will creep in in the mist of day, while I’m trying so hard, or during the dark of night while I’m trying only to wake up in the morning.


Exiting the Diabetes Union

You’ve heard of Brexit, Great Britain voting to exit from the European Union. I’m thinking about Dexit, exiting from the Diabetes Union. That stronghold of health professionals, insurance companies and regulatory agencies that impose impossible standards on people with diabetes.

Standards may be causing more harm than good. Just take a look at these:

Standard #1. You Can Control Blood Sugar

No, you can’t. Once people no longer have a properly functioning pancreas, their blood sugars are designed to be out of control. Yet we make people with diabetes feel achieving “normal” blood sugars is just a matter of being diligent. Worse, when they don’t get them, we call them lazy, irresponsible and unmotivated.

Dexcom CGM - Too many variables to not have days like this

Too many variables to not have days like this

I was on a panel for the psycho-social side of diabetes at this year’s American Diabetes Association’s national conference. Moderator Barbara Anderson, PhD and Professor of Psychology’s first question to me was, “What do you find tough about living with diabetes?”

“The toughest thing is you can’t control it,” I said. “And I’m tired of everyone telling me that I can.” I had to stop as cheers rose from the audience. We patients know this.

Yet we and our blood sugars are constantly judged, rated and compared to people without diabetes. No matter how many “right” things I do, there are too many variables – known and unknown – for me to control the outcome. Read Adam Brown’s wonderful list of 22 factors that influence blood sugar.


Standard #2. Blood Sugars Can Be Predicted Based On Your Actions

No, they can’t. My actions help influence my blood sugar, but they don’t ensure the numbers I hope for. Many times not even close. Why else would we talk about the “X factor”? Do the same things two days in a row and you’ll get different numbers.

Many in business and the military are familiar with the term VUCA. It stands for Volatile, Uncertain, Complex and Ambiguous. It is an acronym for situations that are rapidly changing and challenging where choices and consequences are unclear. Diabetes is a VUCA disease. Especially type 1. Dealing with anything VUCA requires emergent, in-the-moment solutions. Hmmm…the opposite of standards.

If we respect the VUCA of blood sugar management, then we need to work with people differently. We need to help people discover actions that will create the greatest potential for in-range blood sugars – for them, and how to respond when those are not the numbers they get.

Blood sugar management is not cause and effect. People with diabetes, because they have diabetes, are now designed for unpredictable blood sugars. Not acknowledging this truth causes people to feel like failures. Much of the heartache of living with diabetes.


Riva Greenberg - 35 YEARS WITH DIABETES


Standard #3. You’re Just a Disease So Ignore My Language

Language is powerful. In diabetes it often creates critical self-judgment. Why are we still using, “Test your blood sugar” instead of “Check your blood sugar?” You do get that “test” alone implies judgment – we are either passing or failing with each blood sugar “test.”

There’s been a push to get away from labeling blood sugar numbers as “good” and “bad.” They are best used as information to guide our actions forward. Yet why do we call extra doses of insulin “correction doses?” Did we make a mistake the first time?

Have you ever heard the words “non-compliant” and “non-adherent” used outside of diabetes? These are medical terms that have crossed over to judge people. Enough said.

Standard #4. Use Huge Population Studies For Universal Standards Of Care: What Works For The Average Will Work For You

Really? But I’m so un-average. I’m a 62-year-old Caucasian woman of Eastern European descent living in a much too small one bedroom apartment in New York City. I’m 5’4”, or used to be, 125 pounds, on a good day, and if I look at a donut I’ll gain weight just like my rolly polly ancestors.

I have had type 1 diabetes 44 years, a good ten years before I had a glucose meter. I was put on orals the first three years being wrongly diagnosed with type 2. Although I identify as a New Yorker, don’t ask me where to get the best bagel. They’ve long been off my low carb diet.

How much do I have in common with another type 1, let alone a type 2? How much do they have in common with me?

Whittling everything down to the lowest common denominator doesn’t work for individuals. Who are we treating – flocks of geese, herds of cows, or people? We minimize getting it right for individuals when we start from the average.

I don’t want to give you a fifth standard because that would be so standard, but I must acknowledge this crippling standard for our health care providers.

Standard #5. The Impossible Standards Placed on Health Professionals Who Work With People With Diabetes

The health care profession increasingly has misplaced the word, “care.” Not because those who go into the field don’t have it, don’t want to give it. But because the health care “system” has nearly made it impossible.

Twelve minute visits, half the time spent on electronic records, picking codes and “checking boxes,” as one educator nearing her certification said to me. Making sure you covered what was on someone else’s list, not yours.

Diabetes care, as medicine has become institutionalized, modern and test-based, has become looking at the parts – blood sugar, cholesterol, blood pressure, cardiac markers, microalbumin…and missing the whole – the person sitting there.

These standards, meant to improve patient’s health, is in part why so many people with diabetes do not improve.

We could help people manage and live with diabetes a lot better by telling the truth about “controlling” blood sugar. That life without a working pancreas is VUCA. By not labeling people and measuring them against the average. By supporting health providers to be with their patients.

Equipping people to best manage their diabetes and remain invested in doing so starts with a message like this from a health professional, “Keeping your blood sugar in range is hard work. All I ask is that you do your best most of the time. We’ll figure out your unique health patterns together and how you can get blood sugars in range more often. And when they’re not, when you do all the “right” things and your numbers don’t reflect it, you’ll also know how to respond – without blame or self-judgment. Because, it’s just another diabetes day.”

That’s the standard of care I’d like to add to diabetes.

Maybe I don’t want to Dexit but move to the side. The side where we tell people living with diabetes the truth. The side where we focus on what people do well, help them build on their successes and champion them forward.

Think about it. Standards really don’t belong in diabetes standards of care.


UnitedHealthcare Takes Away Diabetes Devices

If you’ve heard about UnitedHealthcare (UHC) limiting members to only Medtronic insulin pumps beginning July 1 and feel this is wrong, please go to “We are DPAC“ (Diabetes Patient Advocacy Coalition) and say so.

UHC members will no longer have an in-network choice among insulin pump providers. UHC has chosen Medtronic as their preferred, in-network durable medical equipment provider of insulin pumps.

The Diabetes Online Community is rallying its social media power and our collective voice to like David, bring down Goliath — this time in the guise of UnitedHealthcare.

Whether you are a UHC member, or even use an insulin pump, which I do not, you should care. Because this is the trend in healthcare. Health insurance companies, not patients and physicians, are deciding what our therapies, treatment and devices will be.

I’ve written about this before. The strategy is short-term savings for which we will all pay dearly in the longer-term — financially, in productivity loss and loss of health.

Kelly Close, founder of CloseConcerns, wrote in diaTribe details of this stunning move, and while she notes Medtronic as an innovative company, she also points out that exclusive payer-manufacturer agreements hinder smaller, more nimble companies from bringing us new breakthroughs. And, taking away patients’ choice to personalized therapy and devices, is a threat to everyone’s personal health.

Wanting to unify our muscle to overturn UHC’s decision, Close and the diaTribe Foundation team put together a quick phone call with numerous diabetes advocates. The call was to solicit opinions, recommendations and connections how to go forward making patients’ needs and desires known to payers.

The diaTribe team also drafted an advocacy letter to be sent to payers that incorporates the knowledge gathered on the call. Please read the letter — it asks for your feedback so we stand strong as a single voice.

Our collective muscle shows how influential we are as an activist community. Quickly after this announcement social media lit up with dozens of advocates posting, including Melissa Lee’s immediate and passionate response onASweetLife. Mike Hoskins’ thorough review of the situation on DiabetesMine.

Also insulin pump manufacturers like Tandem responded:

“Having diabetes isn’t a choice. How people manage it should be,” said Kim Blickenstaff, president and CEO of Tandem Diabetes Care. “Insulin pumps are not a one-size fits all solution. Selecting which pump is the best fit for a person to manage their therapy needs should be a decision made between a person and their healthcare provider.”

The DPAC, as mentioned above asking for your story, was created by diabetes online activists to specifically keep policy makers’ attention on people with diabetes. They are asking now for your story so we can make UHC more aware of what their denial to one’s choice of insulin pumps means to patients — and overturn this decision.

I wrote this as my story on DPAC:

Photo courtesy of Riva Greenberg

“I have had type 1 diabetes 44 years since the age of 18. I have seen diabetes drugs and devices blossom so that people can have the best individualized therapy helping patients enormously to manage their diabetes. And now, it is all going away. Standardized treatment is becoming the norm.

How can we have moved so far forward to now only be going backward?

When I was first diagnosed in 1972 there were no home glucose meters. For a dozen years I would go to a lab twice a year to get my blood sugar checked. Today I have minor complications due to poor glucose control my first years with diabetes. Not due to my behavior, but the lack of tools available.

Now we have numerous glucose meters. Yet programs like Competitive Biddingare limiting choice to patients. And meters available through the Competitive Bidding program are untested and often have lower levels of accuracy and other issues.

Continuous glucose monitors (CGMs), above all devices, most take the guesswork out of managing one’s blood sugar. Yet if you are over 65, you have no access through Medicare. And, people with type 1 diabetes over 60, are among the most vulnerable population for hypoglycemia unawareness.

Personally, I have had to urge my endocrinologist to fight for me to get access to a basal insulin that lasts 24 hours in my body, Toujeo. Lantus never did.

I have had to have my endo fight for me to get access to a faster rapid acting insulin, Apidra.

Many friends with diabetes have shared similar stories with me. I recently blogged about it here on The Huffington Post. One friend was denied access to a CGM by her insurer who told her she didn’t have diabetes because her A1C was under 7 percent. But if she could get it up to 9 percent they’d consider covering a CGM!

We, as people with diabetes, are increasingly at risk for preserving and protecting our health, as our and our physician’s therapy choices are being taken away.

It is unconscionable that the very institution that is supposed to protect our health — health insurance companies — to whom we pay increasingly higher premiums and co-pays, is day by day causing our health to erode.

Patients, physicians, diabetes organizations and industry MUST collectively make sure this practice of restricting medicines and devices is overturned — and does not continue.”

Please, join us in the Diabetes Online Community to protect your health and those of your loved ones. Here’s how:

  1. Tell your story at DPAC
  2. Tweet this UHC issue on #diabetesaccessmatters
  3. Read and provide feedback on diaTribe’s letter
  4. Share this post with others you know with diabetes

Thank you,

Riva Greenberg, Diabetes Advocate, Huffington Post Columnist

This was originally published on DiabetesStories.com.

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What Community Health Workers Can Teach Us

Recently I was invited to Washington, D.C. to work on a project called HealthRise. HealthRise aims to expand access to care for diabetes and heart disease in underserved parts of the U.S., Brazil, India and South Africa.

Community Health Workers (CHW) are a vital resource in this project. Minimally trained, they provide a number of essential and specialized services where health professionals are few. They also provide cost savings amid runaway global health care costs.

I think they also offer something that may too benefit the bottom line – healthier behaviors as a result of the human connection.

As CHWs are members of their community, they share their neighbors’ values and culture. This inclusion, along with their desire to serve their neighbors, typically fosters relationship and trust and feelings of well-being and self-regard in those they see.

These positive feelings can cause people to take better care of themselves. And here I think we have something to learn.

The Power of Relationship
My invitation to work with the HealthRise participants — public health experts, government and community representatives of diabetes and health organizations, Medtronic Philanthropy grantees and diabetes patient advocates from all four countries — was to talk about patient-empowerment. But I didn’t. I spoke about the power of relationship.

These last few years the buzzword in health care has been to be “patient-centered.” But I don’t believe in it. I believe in being “relationship-centered.” And this is not semantics. This is a shift of mindset.

Being relationship-centered emphasizes partnership, support, union and compassion. It brings the expertise of both provider and patient to the interaction. It strengthens both their skill sets as they work together. And it aims for both to be more successful.

I’m not telling you anything new. You know this. By merely being human, you know the need you have for, and the power of, relationships in your life. You know how the good ones make you better, stronger, more complete, more confident and comfort you in times of need.

They also make you healthier. It should come as no surprise that social connectivity and relationships is one of the commonalities shared by people who live in the Blue Zones. Places across the globe where people are the healthiest and live the longest.

Psycholoist and Director of the Harvard Study of Adult Development, Robert Waldinger, discovered that it is not work nor fame but leaning in to relationships with family, friends and community that makes us happier — and healthier.

So why should that value of relationship not also apply to the patient/provider interaction? Yet medical training is almost exclusively disease-focused. Our health care system incentivizes speed and efficiency over care and relationship. Consequently many health professionals have learned to shed their empathy and compassion when they don their white coats.

Community Health Worker Visit in India
Two years ago I volunteered at the Jnana Sanjeevini Medical Center, a diabetes clinic for the poor in Bangalore, India. I had the opportunity to go to a Community Health Worker’s home who was taking part in a pilot training program for CHWs.


What Community Health Workers Can Teach Us - Ratnamma's Kitchen

Ratnamma’s kitchen. Photos courtesy of Riva Greenberg.

The health worker, Ratnamma, had spent weeks knocking on her neighbors’ doors in her village conducting a few simple, basic health checks in their home. She explained that doctors would be coming to her home from the clinic to give medicine, counseling and care. She would let them know what day to come to her home.

We rode out to the village from the clinic, six of us in a minivan. It was a forty-mile two-hour drive over potholed streets.

Upon arrival the clinicians unpacked their boxes of medicine and blood pressure and blood sugar monitoring equipment. Then we waited. Within fifteen minutes the first villagers crossed the main road from their home to receive their health check.

What Community Health Workers Can Teach Us - crowdmedicine

People crossed the road all afternoon. Young family members supported the old and infirm. The youngest were carried in the arms of parents and relatives. Their blood pressure was taken, they were poked for a blood sugar check, asked about their health and even the very old were lifted onto a scale still in its plastic cellophane.

What Community Health Workers Can Teach Us

What made almost an entire village come out for a health check that day? What made people cross the road and sit on Ratnamma’s stoop in the sun, waiting? Largely the relationship Ratnamma had, and had cultivated, with her neighbors. By knocking on their door, spending a bit of time and showing concern for their welfare.

Science Shows We’re Social
In the book, Social: Why our brains are wired to connect, author Matthew Lieberman, a psychologist, explores the premise that our need to connect is as strong as our need for food and shelter. As infants we cannot receive food or be sheltered if we are not in relationship with someone who can do these things for us. Being social, Lieberman posits, is primal and it is a key driver behind much of our behavior.

A year prior to my work in India, I did a workshop with Community Health Workers and patients from the Pascua Yaqui tribe in Tucson, Arizona. The CHWs were diabetes educators, counselors and fitness professionals from the reservation.

I had asked them to invite a patient of theirs to the second day of our training. I had been told by fellow diabetes educators to expect the participants may not be open or emotive and that they might be uncomfortable both with me and each other. Yet nothing could be further from the truth.

As they worked together any walls that may have been there between providers and patients came down. They became so enthused and bonded, that on their own they decided they wanted to come up with ways everyone on the reservation could become healthier.

Community Health Workers are here, 1.3 million and growing. We will come to rely on them to fill the gaps in access to care and they will serve to lower healthcare costs.

But let’s not forget that one of the greatest values Community Health Workers may offer is relationship. And that may be the immeasurable currency that impacts communities’ health — and helps to prevent disease.

And let’s do remember that that same power of relationship influences the quality of our everyday visits with our health professionals. And, what someone with a chronic illness decides to do, and not do, when they leave their doctor’s office.

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How Health Insurance Companies Punish Patients

Who made health insurers God? My friend and I said the same thing the other day, “Insurance companies are running health care. And it’s scary.”

Increasingly health insurance companies are deciding what medicine we get regardless of what our doctors prescribe.

Last year my endocrinologist wrote a script for me for a new basal insulin, Toujeo. After a decade on Lantus, which daily petered out after only 19 hours, Toujeo’s profile showed 24-36 hour coverage. Using Toujeo would mean I had insulin in my body, as necessary, 24/7.

But my health insurance company said “NO.” To possibly override their refusal I had to jump through several hoops, including first use the two basal insulins on their formulary and prove they didn’t work. Then have my endocrinologist get on her knees and beg they honor our request for Toujeo by submitting a second prior authorization form.

For six months during this process I got Toujeo on the down-low from a diabetes educator friend. And my blood sugars, and my life, improved.

Next punished patient

Fellow diabetes blogger, Mike Hoskins who’s had type 1 diabetes thirty-two years, posted this on Facebook. It’s a portion of the letter he received from his new insurance company denying his request for more sensors for his Continuous Glucose Monitor.

Letter from Insurance - Mike Hoskins

Permission granted by Mike Hoskins.

Mike wrote this along with his post, “Damn you, Blue Care Network…The reason there’s no recurring pattern of Lows is BECAUSE of my CGM sensors. So, you want me to have dangerous hypos before you’ll pay for the sensors I’ve been using already for 3 years?!?!

It’s commonly accepted that, Continuous glucose monitoring provides maximal information about shifting blood glucose levels throughout the day and facilitates the making of optimal treatment decisions for the diabetic patient.

Mike’s Facebook friends’ comments of disgust and shared similar experiences are too numerous to list here. The reality – Hoskins is being denied the very instrument that allows him to take good care of his diabetes. The very device that may help him prevent diabetes complications in the future. Complications that will cost health insurance companies significantly more money than they’re unwilling to spend now.

Mike followed up his insurance company’s denial with a letter he titled, “I’d Rather Not Die Today.” He told them the CGM has saved his life numerous times, that his in-range blood sugars doesn’t mean he’s “fixed” but that the technology is vital to his health and how ass-backwards their denial is. We shall see.

Health insurance companies restricting medicine, devices and procedures is not new. But it feels like it’s happening with increasing speed and frequency. And it feels so blatant now; gone is the curtain behind which the regulators sit.

Punished patients numbers 3 and 4

A dozen years ago my friend Susan’s endocrinologist advised that she get a CGM as her type 1 diabetes caused her to have frequent episodes of very low blood sugar overnight. By the way, that can kill you. Susan’s insurer insisted because her A1C was under 7% (the range recommended for people with diabetes) she did not have diabetes.

Her insurer also told her that if she raised her A1C to 9% they would approve the CGM. Susan told her insurance company rep that if she indeed didn’t have diabetes as they ruled, it would be very hard for her to raise her A1C to 9%!

Another friend with type 1 diabetes and hypoglycemia unawareness got an insulin pump and a CGM after giving her health insurance company a 14 day summary of her blood sugars, all blood sugars over an 8 week period, a graph of glucose trends over 8 weeks and a letter from her doctor of medical necessity as they requested. Then her insurance company denied paying for the necessary education to teach her how to use her devices.

And I know many, many, many, many, many, many, many, more stories.

Doing the wrong thing for the wrong reasons

What’s on your health insurance company’s formulary, not what medicine or device or procedure your doctor thinks you need, is increasingly determining what you get. Guess what, it will also determine your ability to be healthy.

It’s transparent now that cost supersedes care. Shareholders and health insurance CEOs are being rewarded while patients are being punished. Every day executives at insurance companies choose higher profits and shareholder value over their members whom they say they protect.

What no one seems to be treating is the condition that’s been created by insurance companies. By withholding drugs, devices, procedures and tests for conditions like pre-diabetes now we’re creating worsening health for patients, and greater costs for insurance companies, over time.

This choice for short term cost reduction is a mistake. It is in shareholders’ interest to give patients what they need now and reap greater return in the longer-term.

While our premiums go up each year and people are paying higher deductibles, health insurance CEOs are compensated in the multiple millions of dollars. Each of the CEOs from the top five health insurers took home (I can’t say earned) at least $10 million. The CEO of Aetna, the third largest US health insurance company, was compensated $30.7 million in 2013.

Here’s my message:

Patients – Don’t roll over, write, document, fight

Doctors – Expect a fight, and please join us

CEOs, Board of Directors, State Insurance Commissioners and shareholders – Stop rewarding yourself at patient’s expense. Do what’s right.

President Obama – Condemn these ludicrous denials and get insurers instead to reward patients for positive health behaviors

And get out of our way. Stop punishing patients who educate themselves, take responsibility for their health and do so well that insurers don’t even think they have an illness. Amen.

Originally published in The Huffington Post.


How Taking Care of my Diabetes Could Have Killed Me: Double-Dosing

The hsband above: double-dosing

The husband above.

I panicked. Just around midnight. Minutes after I took my once nightly injection of my long-acting insulin.

Had I taken my once nightly shot, twice?

Like others with type 1 diabetes who don’t use an insulin pump, I take what’s called MDI. Multiple Daily Injections. I take an injection of rapid-acting insulin before meals and snacks to lower the rise of my blood sugar produced from carbohydrates.

I also take an injection of long-acting insulin once a day for the background metabolic functions that require insulin.

For years I took this once daily injection at 9 AM. But when I switched my long-acting insulin, from Lantus to Toujeo recently, taking Toujeo at night seemed to work better for me. Now I take it every evening at 9 PM. Yet, this habit isn’t really fully formed yet.

It was easier to take my once-a-day insulin in the morning. I’d take it at the same time I took my rapid-acting insulin to cover breakfast. But there is nothing to remind me to take my 9 PM injection.

So I’ve written it onto my computer calendar. It’s there in the box every day. Well, every night. Of course this does require me to be behind my computer at 9 PM to see the calendar alert. Sadly, I usually am, but that’s another story.

Last night, though, from 8 to 10 PM I was watching a movie on my iPad sitting on the couch. Chances are my calendar alert came up on my iPad but, watching the movie and intermittently Facebooking a friend, I likely didn’t see it.

Yes, the horrible dopamine of social media and multi-tasking had kidnapped my diabetes-tasking-mind. But I was trying to do a good deed. My “friend” had asked, “How do I adjust my long-acting insulin for flying to Germany?”

Of course this should have reminded me to take my own insulin injection. And, maybe I had. That was the problem, now at midnight. I couldn’t remember if I had. Please, no sneers, life with diabetes is tough enough.

Reviving myself from my near slumber, I ambled into the kitchen where I keep my long-acting insulin pen. I stared at the pen begging it to answer my unspoken question, “Did I stick you in my body just a few hours ago?”

When I’m not certain I can usually answer that question by remembering where on my body I injected. If that doesn’t work, I try to remember where in my apartment – in the kitchen, in the bathroom, on the couch? I was coming up blank.

When I was using Lantus, I relied on a Timesulin cap to keep track for me whether or not I had taken my shot. Timesulin is a pen cap with a counter in it. I always knew how long it had been since my last shot. Simple, yet fantastically effective.

But Timesulin doesn’t make a cap for Toujeo. And while I was using my Timesulin cap on an old Lantus pen, “shadowing” my Toujeo injections, the cap’s battery had run out just three days ago. I was in the process of getting a replacement.

Standing right at the fork of do I or don’t I, I dialed up my dose and injected. If this was my second long-acting shot of the night, I would have double my dose of insulin in my body for the next 24 plus hours.

This month I’ll have lived with type 1 diabetes forty-four years. Yet, for anyone who has it, we know every day is a new day.

Years in don’t prevent making a mistake. Or being at risk every day and every night for taking too much insulin. Leaving you wondering, as I was now, if I was about to overdose in a few hours and not wake up. Trust me, that’s a terrifying feeling.

Immediately after I took the shot, I googled, “Who has double dosed their basal insulin?” “What do you do if you take two long-acting shots by mistake?” I read the stream of comments and then followed the strategy many well-wishers suggested. Set your alarm and wake up every two hours to check your blood sugar.

I read for another hour til 1 AM and set my alarm for 3 AM. Laying there, I wondered how long it would take my husband, who was in Holland on business, to discover tomorrow that I hadn’t woken up, but had died.

Next thing I knew I heard music. It was my alarm. Instinctively I scanned my body for signs of low blood sugar: Was I convulsing? Was my heart beating frantically? Was I sweating? Were my thoughts muddled? No, no, no, no, a very good sign.

I walked to my bureau where I had laid out my glucose meter ready for the check. Before going to sleep my blood sugar was 135 mg/dl (7.5 mmol/l). Voila, a lovely 120 mg/dl (6.6 mmol/l)! I had not taken two shots. This small overnight drop in my blood sugar is my normal.

In the morning my blood sugar was 105 mg/dl (5.8 mmol/l). Fantastic, no worries. But I do worry.

It can happen again. It can happen anytime. And I wonder if the chances will grow greater that I forget if I took a shot or not as I get older.

Type 1 diabetes is not just arduous to take care of. It is a scary disease. Frightening for the almost inevitable miscalculations that will occur in a lifetime of every days.

I, like many people, have mixed up my rapid-acting and long-acting insulin. Once, exactly a year ago. Drinking a quarter cup of maple syrup prevented a near death experience then.

Insulin is a dangerous drug yet we must rely on it to live.

But please don’t forget, those of us who live with type 1 diabetes, and to a lesser degree those with type 2 diabetes who take insulin, are making daily decisions for their health – that can just as easily snatch their lives away any day, or any night.


Dr. Mark Hyman’s Fat Summit Findings

Dr. Mark Hyman's Fat Summit

Those who follow me on Facebook saw me litter my page this week with a bunch of screen shots from Dr. Mark Hyman’s “The Fat Summit.”

I’ll say right now, contrary to what you probably think based on the photo above, we are not getting fat from eating fat.

Dr. Hyman, best-selling author of health and nutrition books, particularly around carbs, fat and blood sugar, director of the Cleveland Clinic Center for Functional Medicine, and HuffPost contributor, interviewed more than 30 nutrition experts on the effects of different types of fat, and carbohydrates, on our body.

His expert panel included top people in the medical, scientific and lifestyle sciences. Just to name a few: Deepak Chopra, MD, Chris Kressler, MS, Aseem Malotra, MD, David Ludwig, MD, PhD, Walter Willett, MD, Christiane Northrup, MD, Michael Roizen, MD, Neal Barnard, MD, Barry Sears PhD and Gary Taubes and Nina Teicholz investigative nutrition journalists.

Hyman, and most of his experts, advocate a diet high in healthy fat — nuts, seeds, olive and coconut oil, avocado, eggs, full fat dairy and some meat. And no refined carbohydrates. I should say right now that’s my own personal bias, as well and how I eat.

Most of his experts validate it’s not a matter of calories in, calories out we’ve always heard or eat less, move more. It is the quality of those calories and how your body uses them.

Interestingly, the very friendly and charismatic Hyman, talked frequently about how contradictory the information is coming at Americans about nutrition and how difficult it is for the average person to know what’s right and what’s wrong. No doubt. So I found it funny that even among his guests, not all agreed with each other.

Very briefly: All agree healthy fat is better than bad fat. Healthy fat is better than refined carbohydrates. The disagreement is whether we should really eat a lot of healthy fat, like neurologist Dr. David Perlmutter, who pours olive oil on his morning eggs. Or should we severely limit healthy fat too like Drs. Dean Ornish and Joel Fuhrman who think the benefit doesn’t outweigh the calories consumed. Yes, pun.

For me, having diabetes, eating a diet plentiful with healthy fat and low in refined carbs is a no-brainer. Carbs raise blood sugar. Refined carbs spike blood sugar. Higher blood sugar requires more insulin. Insulin is a fat storage hormone. The more of it circulating in your blood stream, the more it’s causing calories to be stored — in the liver as fat.

Voila, you gain weight, mostly putting it around your belly, and you end up with fatty liver disease to boot. By the way, most people with Type 2 diabetes also have fatty liver disease and don’t know it.

Dr. Hyman is also popularizing the notion that goes a step beyond “food is medicine” to “food is information.” Food tells your body how to act, respond, behave; it guides your metabolic response, tells your body what hormones to stimulate and influences what genes get turned on. That’s why a more nutritious diet decreases the risk of all dis-eases.

Here are some take-aways his experts shared:

  • The way your body metabolizes fat and refined carbs, it’s the carbs that cause weight gain
  • Eat mostly plant foods and nutrient dense foods. Don’t eat processed foods.
  • Food can be more powerful at lowering blood pressure than medication
  • If you want to lower your A1C eat more fat and less carbs
  • When the brain burns fat as fuel instead of carbohydrates it does so more efficiently and without creating as many free radicals
  • Saturated fat is not the devil. Most saturated fat in our body is actually made from carbohydrates.
  • Insulin keeps fat locked in our fat cells, preventing it from getting burned or used. Eating fat does just the opposite.
  • Obesity kills more people than smoking and alcoholism and being sedentary combined
  • Soda consumption is the number one contribution to obesity in America
  • Most of our cows today eat corn, which they aren’t designed to eat but corn fattens them quickly inflaming their fat cells. Eating them fattens us and contributes to our body’s inflammation.
  • The food industry gives an enormous amount of money each year to politicians
  • Procter & Gamble has long been a major funder of the American Heart Association. You do the math.
  • Media no longer has time to do investigative research on food plus their news outlets are usually owned by corporations that have an agenda

One thing not to forget has become a catch phrase in diabetes, “Your diabetes may vary.” As Hyman stressed, we are all individuals. Different things may work better for different individuals. So whether you should eat a lot of healthy fat, moderate amounts or very little, may differ for you. The best way to know is to try the variations on yourself.

For me eating a liberal amount of healthy fat — nuts, seeds, tahini, avocado, coconut and olive oil, eggs and some cheese and Greek yogurt, and grilled chicken and fish with occasional red meat, tons of vegetables and little to no refined carb — works extremely well in keeping my weight down and my blood sugar from spiking. I haven’t counted a calorie for a decade. And I feel good.

Of course we also don’t live in a food vacuum. I walk an hour most days, drink wine with dinner most nights, drink a lot of water and no sugary beverages and have the genes I was born with.

I don’t think there’s any easy answer to this nutritional debate. But I do think we’re lucky more information is coming out that we can all access.

So take the daily contradictory news headlines about food and what the government says and ads say, even I hate to say it but must, what the behind-the-curve organizations like the Heart Association and the American Diabetes Association say, with a grain — or a plantation full — of salt.

People can always make studies and statistics say what they want them to say and food lobbyists are a powerful force.

How can we dismiss that forty plus years or so ago, when we were all pushed to stop eating fat and eat more carbs, Americans got fatter than ever?

Originally published in The Huffington Post.

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Why Are We Ignoring Diabetes Education?

Diabetes is a self-managed condition. That means the person with diabetes must take care of it each and every day — and know how to do so.

There’s an infinite amount of things they must know including how foods impact blood sugar, blood pressure and kidney health. The benefits of exercise and when it’s dangerous to exercise. The importance of taking your medicine, or not. What the blood sugar numbers on their glucose meter mean and what to do with that information. How to prevent and recover from devastating low blood sugar and prevent frequent high blood sugars.

Knowing how to manage one’s diabetes can be the difference between living a fairly normal life or suffering from debilitating diabetes complications.

Complications can be devastating for both the person with diabetes and his or her family. They include losing your vision, having your foot or leg amputated, feeling constant pain, tingling or absolutely nothing in your feet and dying prematurely from heart disease, as two out of three people do with type 2 diabetes.

Nearly 400 million people in the world have diabetes and half don’t know it. 86 million people in the U.S. have prediabetes, 7 million more than a few years ago. Every 6 seconds a person dies from diabetes.

Since this education, called diabetes self-management education (DSME), is essential to one’s quality of life with diabetes, why isn’t it one of the first things healthcare providers make sure patients get? A study reveals that only an estimated 6.8 percent of people with newly diagnosed type 2 diabetes received DSME during their first year with diabetes.

What’s even more dismaying is that the study participants had private health coverage that would cover the cost of their initial self-management education.

Equally hard to believe is the disclosure at last year’s American Diabetes Association (ADA) conference. Many providers don’t even know what diabetes educators — health care professionals specifically trained to provide this education — do!

The final fact that leaves my head spinning is we know that diabetes education reduces hospital visits, re-admissions, complications — and costs.

To better understand the state of, and hopes for, diabetes self-management education, I spoke to two passionate, concerned and driven women — the 2015 President of the American Association of Diabetes Educators (AADE), Deborah Greenwood, PhD, RN, BC-ADM, CDE and the 2016 President Hope Warshaw, MMSc, RD, CDE, BC-ADM.

Riva Greenberg: Where are we today in recognizing the value of diabetes self-management education and what’s being done to make it more available?

2016-01-06-1452120441-8357567-ScreenShot20160106at5.46.12PM.pngDeborah Greenwood: “A very positive and significant trend I’ve been seeing is an emphasis on diabetes prevention and wellness. As you know many millions of people in the U.S have prediabetes so we must increase awareness, provide education, preventive care and behavior change support to reduce the progression of the disease.

Also, many new technology-enabled models of care including telehealth, mobile health, and mobile prescription therapy are helping us provide DSME to more underserved and remote populations.

RG: What do you see as the primary goal for the AADE this year?

DG: As a professional member organization, the AADE works to encourage diabetes educators into the field, advocate for educators by regularly communicating with the primary care provider community and support legislation for reimbursement of diabetes education.

As an example of AADE’s influence, Medicare reimburses for DSME within an ADA recognized or AADE accredited program. But this does not recognize diabetes educators as qualified providers of DSME. Right now we’re advocating a bill in Congress to include diabetes educators as providers as well as increase DSME access.

I’m also very excited about the AADE’s new 2016-2018 strategic plan. The AADE board of directors has drafted a visionary plan to shape the future of the diabetes educator profession, while ensuring that people affected by diabetes are at the center of all we do.

What we need now, to secure diabetes self-management education for the tens of millions of people with diabetes, is to help those who run hospitals, insurance companies and clinics see that DSME not only improves people’s health but will also benefit them with significant cost savings.”

RG: What do you think of the low incidence of people being referred to diabetes educators?

2016-01-06-1452120736-1958989-sshope.pngHope Warshaw: “The 6.8 percent statistic, a case in point from one study, is evidence that most people with type 2 diabetes, most of whom see a primary care provider, are not getting referred for diabetes self-management education. Even though for many people with a private health plan or Medicare Part B this is a covered benefit.

As my colleague, Marti Funnell, RN, CDE, said, 6.8 percent is a good A1C level, but it’s unacceptable as a percent for people who receive diabetes education.

Unfortunately, there continues to be limited understanding among providers of the critical junctures in one’s life with diabetes when they should be referred for DSME.

At the 2015 American Diabetes Association conference, a joint statement was presented by the American Diabetes Association, the AADE and the Academy of Nutrition and Dietetics to stress the four junctures when people should be referred for DSME. At diagnosis, annually, when complications arise and when transitions occur in care.

RG: How will the profession keep up with the millions more people getting diabetes each year?

HW: We undoubtedly need to attract new healthcare providers to the profession of diabetes education and AADE. This is part of our new strategic plan efforts, to further develop this specialty in academic institutions.

In addition, diabetes educators are helping to train and support individuals who can be considered diabetes paraprofessionals, such as community health workers, peer supporters and promotoras. These are lay people in the Hispanic/Latino community who receive specialized training to provide basic diabetes education and even more importantly, support.

I also believe people with diabetes can make excellent peer supporters. If anyone is interested, I’d urge them to talk with their diabetes educator or other educators they know to see how they can help extend the services of diabetes educators.

I would also encourage every diabetes educator and person with diabetes to go online, see what’s happening and get involved with the Diabetes Online Community (DOC). We have a resource page that can serve as a starter to learn, connect and engage with the DOC.

This is an amazing group of people, like yourself, who have diabetes and are sharing their knowledge and experiences and supporting others. For diabetes educators there’s rich insight here into the experiences of people with diabetes and their caregivers.

RG: What can we be hopeful about for people who live with diabetes and need education?

HW: That through blogs like this one more people will know about and get referred by their provider for DSME.

AADE’s new strategic plan that Deborah mentioned, studied the landscape in which diabetes educators work. We considered the myriad of changes occurring in our rapidly changing healthcare environment, including device and communication technologies, increased awareness of the psychosocial aspects of diabetes and other factors.

It positions AADE to help diabetes educators better meet the current demand, the demands of the millions of people being diagnosed with diabetes and the aging population of people with diabetes.

Bottom line, as Deborah said, the entities that pay for the delivery of healthcare must recognize the cost savings of DSME. And that diabetes education is not just what takes place when a patient sees an educator for a prescribed visit.

Diabetes educators work in the inpatient areas of hospitals on glycemic control protocols, transitioning people back to their insulin pump after surgery, getting people started on insulin, decreasing hospital readmissions, ensuring patient safety and much more.

We work in food banks, in Federally Qualified Health Centers and in supermarkets and pharmacies delivering education. We provide telehealth services, provide type 2 diabetes prevention programs, operate our own private practices, work for device companies. I could go on and on.

And, yes, we are working as hard as we can to get that message out to ensure that diabetes educators are utilized and respected and that more and more people will have the education they need to live long and healthy lives with diabetes.”

I believe diabetes educators are one of the most important, and undervalued, professionals in our healthcare system. I am constantly meeting new educators through my work and my peer-mentoring, and have the utmost respect for them and the hurdles they’re up against.

It’s time to ensure that these professionals are recognized and utilized. And that every person with diabetes gets the self-management training essential to live a healthy, full and productive life with diabetes.

Photo use granted by the American Association of Diabetes Educators.

Originally published in The Huffington Post.



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