We R the Cure

Seeking Cures and Cheating Destiny


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Mathematics, Mary Tyler Moore and Standard Deviation, Part 2: Looking for the Type 1 Auto Pilot Easy Button

One of the all-time great movie quotes, from Airplane circa 1980s, actually fits perfect for persons living with Type 1 diabetes who keep looking for a qualified pilot or Auto Pilot “Easy Button” to help them fly safe and keep their complex human body on course:

Photo of Auto Pilot Easy Button to push for diabetets control

Managing Type 1 diabetes is like flying a complex jet airplane. What we need is an Auto Pilot Easy Button to keep us flying level and safe.

“All right, Striker, you listen, and listen close. Flying a plane is no different from riding a bicycle; it’s just a lot harder to put baseball cards in the spokes.”

The more you know about your own diabetes, the less you understand. The more time you spend managing your diabetes, using the latest technology tools, aiming for a lower A1c and a lower Standard Deviation, logging in and learning from the Diabetes Online Community (DOC) — the less you actually comprehend about a chronic disease that is, actually, almost impossible to control. There is no Auto Pilot button in the T1D cockpit.

In the first four months of 2014, I’ve been hyper-focused or rededicated to my diabetes management. Thanks to my new tech partner, the Dexcom “Studio” reporting app, I’ve been monitoring my hourly, daily and weekly trends, adjusting basel and bolus rates based on pattern or trend lines,  and charting my own “success report” or flight plan.  Of course, a true “success report” for Type 1Ds would show a TAB that says: “CURED.” Sorry, but I have not found this category yet on the Dexcom app.

If you’re looking for good news, here it is: My quarterly check up in April produced my best A1c number in almost 2 years — a 7.5 A1c! This is down from my 7.8 A1c in January, and my better-than-average result also produced a Standard Deviation number of 51 for April — way, way down from my Feb/March SDs in the high 60s.  I am thrilled with the current trend line and I better understand how hard work, diet and exercise, paying attention to the mathematics of diabetes and some luck produces better blood glucose control and fewer serious medical complications. This cause-and-effect was established in  the landmark DCCT study done more than two decades ago. The Diabetes Control and Complications Trial (DCCT) showed that keeping blood glucose levels as close to normal as possible slows the onset and progression of the eye, kidney, and nerve damage caused by diabetes. In fact, it demonstrated that any sustained lowering of blood glucose, also called blood sugar, helps, even if the person has a history of poor control.

However, here’s where the mathematics, Mary Tyler Moore and standard deviation come back into the story:

How can anyone spend 24/7, 365 days a year — every year for the rest of my life — working this hard at a full-time job that brings with it no pay, no days off, no miracle cures,  and the uncertainty that better blucose control– the goal is under 7.0  A1c – actually reduces medical complications?  As the Mary Tyler Moore TV theme song might actually ask: “You might just make it after all?”

Despite my recent well-earned success, my monthly and quarterly results still show that I’m still spending about 30% of my days ” out of my target” blood glucose zone ( 80 to 170) and, therefore, I still have not achieved true “control”  and may face potential health risks as I age.

Graph showing my Diabetes Glucose Control

My Dexcom Success Report shows better “In Target” results but shows I’ve still got a long way to go to achieve auto glucose control over my Type 1 Diabetes.

Here’s what my flight crew told me this month about my Type 1 Diabetes and how I’m doing on my journey toward better, healthier outcomes.

My Endocrinologist: “I don’t look for a certain standard deviation number, whether that’s 50 or lower. The key is to get the number as low as possible.  Your A1c is moving in the right direction but it needs to be lower.”

My Dietitian — first time I’ve met with one in 10 years. “People with Type 1 have all these numbers running around in their heads. They are constantly thinking about glucose numbers, A1Cs,  carbohydrates and is their trend line going up and down. I think it gets to be a little overwhelming at times. You should give yourself some credit because you are managing things that a person with a normal, functioning pancreas never thinks twice about. My glucose numbers may be the same as yours in a given day, but I don’t spend a minute thinking about it because my pancreas is doing it for me.”

My Dexcom Rep who is also a Type 1 diabetic — “The most important goal is more stable blood sugars. Our goal should be below 50. Even below 40. Our bodies like stability. There is a lot more to diabetes than just controlling one measurement or number. There are so many factors and stress is one of the biggest. If you have a good day and your numbers are improving, that’s a good thing. But some of this is really out of our hands.  We are humans after all.”

I turn to technology to help best manage my diabetes because my pancreas stopped making insulin almost two decades ago, and these advances in treatment have improved my quality of life immeasurably in some ways (emotional health) and very measurably in others (better blood sugar control). The technology we need now is the Auto Pilot Easy Button — or the Artificial Pancreas closed loop system. Push it and it’ll be almost like your pancreas is flying the plane again.


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Ending the A1C Blame Game: Reposting a “Must Read” From MD on Insulin Nation

Research Corner: Ending the A1C Blame Game (via http://www.insulinnation.com)

When glucose sensors first became available in clinical trials some 2 decades ago, I decided to wear a sensor to compare my glucose levels as a non-diabetic individual with glucose levels of my patients. I was excited to have this new tool, which measured…


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Mathematics, Mary Tyler Moore, and Standard Deviation, Oh My! We’re Gonna Make It After All

The headline, I hope, made you stop and wonder. Math. Mary Tyler Moore. Standard Deviation? Three random sounding topics that actually have one thing in common: Living with Type 1 Diabetes, of course.  The balancing act is the perfect excuse to republish some of Mary’s best quotes — about her battle with the disease — on our complicated journey toward better health and cheating our destiny.

We R the Cure blog and photo of Mary Tyler Moore at JDRF Childrens Congress 2009

Mary Tyler Moore greets President Obama during the 2009 JDRF Children’s Congress event in Washington. DC. She is flanked by her husband, Dr. Robert Levine, and boxer Sugar Ray Leonard.

“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one,” Mary has told members of the United States Congress during JDRF’s Children’s Congress. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”

I also know that a photo — or in this case a You Tube video from @Blogdiabetes friend Tony Rose — is also worth a 1,000 amazingly insightful words from me, the CEO, Editor-In-Chief of “We R the Cure.com.” Right? As I learned in Journalism 101, it’s time to get to the “So What?” or “hook your audience now” or lose them forever sentence.

After living and dying in three-quarter time with Type 1 diabetes for 15+  years, I’m actually beginning to figure out how much effort, dedication, cool technology and sheer luck it takes to “control” my blood glucose. The answer: It takes every waking second of every day, and that still does not guarantee an A1C less than 7 or eliminate the rollercoaster blood glucose ride. I love coasters, but the more you learn about this crazy,  chronic disease, and the harder you work to control it using insulin pumps, meters, CGMs and Apps — It still winds up controlling you most days.

For the past 4 months, I’ve been religiously wearing my new DexCom 4 Platinum CGM — which I love. And, as the images here will show — my standard deviation has dropped from 68 to 58 and is approaching the 50 reading which, according to Laura Adams, Certified Diabetes Educator with DexCom, is the number persons with type 1 diabetes (PWD) should aim for when seeking to control their glucose. In fact, Laura says a standard deviation reading between 50 and 40 on my DexCom ” Studio” reporting App should be the target. Fortunately, calculating the SD number is done automatically by the App based on my CGM numbers. They’ve taken the math out of my hands.

In Part 2 of this blog story, we’re going to dive deeper into the math and determine if standard deviation, A1C or something called “Glycemic Variability” is the true “gold standard” of BG control?

For now, I’ll leave you with these positive trendlines from DexCom App, which does not sync up with my insulin pump App (Diasend) — but that’s another story. Let’s call this my starting point as I aim for better control with the goal of reducing the possibility of serious health complications such as blindness, heart disease, stroke and amputations. I am in charge of my own cure, and getting better control of my numbers is the key.

The good news: My numbers are getting better thanks to technology, effort and some luck. The sobering news: this is a 24/7 battle and there’s never ever a day off.  Don’t take my word for it, take it from my Type 1 best friend, MTM:

“Chronic disease, like a troublesome relative, is something you can learn to manage but never quite escape,” Mary explains on JDRF.org’s website. “And while each and every person who has type 1 [diabetes] prays for a cure, and would give anything to stop thinking about it for just a year, a month, a week, a day even, the ironic truth is that only when you own it — accept it, embrace it, make it your own — do you start to be free of many of its emotional and physical burdens.”

We’re gonna make it after all. We R the Cure.


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Encapsulated Cell Therapy Aims to Transform, Cure Type 1 Diabetes? ViaCyte’s Human Clinical Trials Coming In 2014

BETHESDA, MD (March 1, 2014) — Well, there you go again. Getting your hopes up for another possible ” cure” for Type 1 Diabetes. That’s what I told myself as I listened to Dr. Eugene Brandon, Ph.D. — an obviously intelligent scientist who was also able to speak in layman’s language — present his case at the JDRF Research Summit hosted by the Greater Chesapeake & Potomac Chapter of JDRF last Saturday.

As I listened and tried to understand the science behind his talk, it was difficult to stay realistic. If they can implant regenerative cells under the skin and these cells will function like  healthy pancreatic cells, then this crazy idea just might work for some children or adults living with T1Ds. So my next question was: When is the first human clinical trial and how do I sign up? Damn the risks; my time is running out. That’s what went through my mind and probably a few others listening to him speak.

Before I booked my flight to San Diego, I settled down and realized one simple fact: I’m attending a diabetes research summit where “hope” is always the key word. Dr. Brandon,  Director of Strategic Relations & Project Management at San-Diego based ViaCyte, spoke to a full ballroom of  T1Ds and their families at the Bethesda North Marriott during the 4th annual JDRF Research Summit.  Dr. Brandon talked about his company’s VC-01™ combination product. It is a stem cell-derived, cell therapy product that the company believes could transform the way patients with Type 1 diabetes manage their disease.

The product is comprised of pancreatic progenitor cells contained in a proprietary device that is designed to be inserted under the skin.  Upon implant, the product is expected to vascularize as the cells further differentiate to islet-like structures that generate insulin and other expected regulatory factors in response to blood glucose levels, essentially providing patients with a replacement for the cells lost as a result of the disease. The company has reviewed the VC-01™ combination product development plans with regulatory authorities at the US Food and Drug Agency and Health Canada.

By acting essentially as a replacement endocrine pancreas, the source of insulin and other regulatory hormones produced in our bodies, VC-01 combination product has the potential to be a virtual cure for type 1 diabetes. The VC-01 therapy is the combination of:

  • PEC-01 cells: A proprietary pancreatic endoderm cell product derived through directed differentiation of an inexhaustible human embryonic stem cell line, and
  • Encaptra drug delivery system: A proprietary immune-protecting and retrievable encapsulation medical device.

Pending regulatory authority review of its planned application, ViaCyte is planning to initiate clinical development in patients with Type 1 diabetes this year!  As he finished his presentation, Dr. Brandon answered a few of the lingering questions from the optimistic but realistic Type 1 Summit attendees.

The testing has worked in mice. But is it safe for humans?

“By all accounts, it is a stable product. Our testing shows it stays stable for the life of the animal,” Brandon said. “If we can get this biological process to work, we think we can replace the damaged islets.” The company also has developed a process for inserting and removing the implanted device quickly. “Something like this has never been tested in humans before.”

When will human clinical trials begin?

“We think we’ll be in pretty good shape to get this ready and approved by FDA for a first human trial planned in 2014,” Brandon said, adding that his company has already held discussions with the FDA on their proposed timeline. “You don’t want to spring something like this on the FDA.”

What is the lifecycle of the implanted device? 

“That is the million dollar question to be determined in the clinical trial,” Brandon said. “How long will this last if it works?” Because the cells are contained in a ” tea bag” type of container, it is anticipated that the body’s immune system will not strike or reject the foreign object. “Theoretically, these implants could last for many years.  That is the purpose of the clinical trials. We will start learning things that can only be discovered in a human clinical trial.”

At the end of the summit, I left with renewed hope for a cure and the sober realization that this chase for a miracle is nothing new to persons living with all types of deadly diseases. In fact, the JDRF was formed 40+ years ago by parents of children with Type 1 diabetes who were committed to pushing faster to fund a cure.  In seeking a cure, we all jump into the fountain of scientific hope. Compared to the quality of life for diabetics before the discovery of insulin in 1921, Type 1 diabetics are living in a golden age of scientific and technology success. Things are improving at a rapid pace. So we keep chasing the illusion and hope to cheat our destiny for one more hour, for one more day, for one more year. Until there’s a cure … we march on.


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2013 Blogging Year In Review: Thanks For Visiting We R The Cure

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,200 times in 2013. If it were a cable car, it would take about 37 trips to carry that many people.

Click here to see the complete report.


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Spare A Rose, Save A Child : Can You Spare $5 or More To Deliver Insulin

Sometimes, all you have to do is Stop, Look, and Listen. Then you see the blessings surrounding you and give thanks.

Visit Spare A Rose Save A Child website to donate

Click here or visit http://www.p4dc.com/spare-a-rose/ for more information

I have several unopened vials of Insulin in my refrigerator waiting to be used thanks to my health insurance and my co-pays. It still costs too much. However, I have it. Without insulin, persons with Type 1 diabetes would look pretty darn weak, sick or worse. But that’s another story for another day. Today, it’s time to raise some awareness.

The International Diabetes Federation runs a program called Life for a Child. Life for a Child provides insulin as well as other diabetes supplies and education to more than 12,000 impoverished children living in 43 developing countries. Without this help, there is a good chance they would not survive. In some areas, the life expectancy of a child with type 1 diabetes is less than one year.

In honor of Valentine’s Day, the Diabetes Online Community is spreading the news about the “Spare a Rose, Save a Child” campaign encouraging people to spend the amount they would spend on one rose to save the life of one child. Just five dollars will help support a child for a month. A dozen roses would help a child for a year. The IDF’s goal for 2014 is to raise $10,000!

Insulin was first invented in 1921. It’s not a cure, but no one should die from diabetes in 2014 because of lack of insulin. Insulin is available. So let’s get it to those who need it most. Thanks for your help!


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Researchers Agree: The Status Quo Is Not Acceptable; We Need More Clinical Trial Participants To Drive Progress

Imagine my surprise and excitement when a leading Type 1 diabetes researcher, Dr. Desmond Schatz of the University of Florida, unofficially promoted our “We R The Cure” blog site during the JDRF Type 1 Diabetes Research Summit on Feb. 18, 2012. Let’s roll the audio tape:

We R the cure JDRF walk team

We R the Cure — and so are you. Sign up for a clinical trial today.

“We do not have enough people participating in research studies,” Dr. Schatz told several hundred Type 1D enthusiasts in his opening statements. “My goal is to give you hope, to inspire hope, and to push you to get involved. Without U, there can be no cure.” Almost on cue, an outburst of applause came from the adjacent ballroom where young children with Type 1 diabetes were playing and having fun while their parents attended the JDRF Summit. Dr. Schatz heard the applause and laughed. “I am here to make it clear, that the status quo (in Type 1 research) is unacceptable!” And again, the children cheered right on cue.

This blog is dedicated to the patients, doctors, nurses, researchers and big thinkers who are actively pushing research forward – in our search for solutions & cures for persons living with auto immune disorders such as type 1 diabetes and certain forms of cancer that are tied indirectly to weakened immune systems or a virus attack. If you’re ready to learn more or join a clinical trial, check back here often for news and information. Or simply click on Clinical Trials to get started.

My name is Mike Anderson, and I am the creator and editor of We R The Cure. I received my Type 1D diagnosis — from out of nowhere — in May 1998. Together with my friends and family, I am a passionate advocate for raising awareness and raising dollars for research and real solutions that will improve the quality of life for children, teens and adults living with this chronic disease. And one day — A cure or many cures.

A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge.  There are two main types of clinical studies: clinical trials and observational studies.    ClinicalTrials.gov includes both interventional and observational studies. So, what R U waiting for … Think about joining a clinical trial in 2014. It’s a new year’s resolution that is worth keeping. Thanks for your participation. werthecure.com


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Resolutions To Keep In 2014: One Small Step For Man, One Giant Leap … For Diabetes Awareness

Welcome back to We R The Cure, 2014 Edition. I am happy to be back among the Diabetes Online Community.

Artificial Pancreas Closed Loop System

Artificial Pancreas Closed Loop System

Yes, I’ve been away enjoying Christmas, New Year’s, working, searching for new work and — most importantly, focusing on what matters the most to me: Family, Friends and Faith. If you guessed that what matters most is my Type 1 D, well — you were close but wrong. Of course, it should have been a multiple choice answer.

If you are a person living with Type 1 diabetes, managing your sugar highs and lows is  ALWAYS on the list of what matters most. Healthy and active on the outside; dealing with a chronic, life-threatening disease on the inside. It is a frustrating condition for the 3 million Americans — toddlers, children, teens and young adults — living with it.

A new year is here, and it’s time for me to join the “New Year Resolutions” chorus and to get my editorial content calendar back ON THE GRID. So here goes my Top 5 list of what We R The Cure will focus on in 2014. Of course, the numerical ranking may switch or slide during the year. What is number 1 today, may be number 2 by year’s end. But you get the idea.

  1. Tell the story of my Aunt Mary Jane.  A Joslin Center Medalist who’s been living with Type 1 diabetes for 7 decades and is still waiting for the cure they promised her back in the 1940s. She’s a survivor who has lived the ups and downs of diabetes since the age of 7. She’s got a story to tell.
  2. The focus of ” We ” R The Cure is the amazing Type 1s, the researchers, the doctors, and the clinical teams pushing hard to bring tech solutions like the Artificial Pancreas to market. The focus is on all clinical trial participants. If you are participating in a clinical trial and want to tell your story — please contact me. Your story needs to be told. And we need to encourage more Type 1Ds to seek and participate in clinical trials. We need more guinea pigs.
  3. Research and technology “News that we can use.” As a former reporter, my job is to highlight and interpret the daily digest of exciting and confusing news surrounding Type 1 and Type 2 diabetes.
  4. Wearing My new DexCom 4 and, hopefully, the DexCom 5 in Clinical Trials at the Center for Diabetes Technology at UVA. The DexCom 5 will send its results directly to the Artificial Pancreas smartphone and not to the transmitter. This must be tested and proven successful before “Home” AP trials can begin in 2014.
  5. Biking for the Cure in 2014. Finally putting this on my ” bucket list” and doing it. The target goal: Riding 60 or 100 miles, raising money for diabetes research, and keeping a journal about my training and crossing the finish line.

 

OK, there it is. I’ve placed my resolutions and goals online. WeRThe Cure is ready for another year — year 16 — of balancing life and diabetes. With the love and support of my spouse, family and friends — 2014 will be another great year.

Thanks for reading. Please comment or share ideas or stories.

Mike Anderson


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Diabetes Technology: What Patients Really Want — The Video


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Why Do We Need Type 1 Research? Meet Molly: She Is A Diabetes Advocate Who Almost Became A Diabetes Statistic

I want you to meet Molly. She’s a CDE and clinical nurse trial coordinator at the Center for Diabetes Technology at the University of Virginia School Of Medicine. She’s a type 1 herself who works with the famous Dr. Boris Kovatchev running cutting-edge Artificial Pancreas trials.

UVA Nurse Molly McElwee Malloy

Molly McElwee Malloy

Earlier this year, before you ” met ” Molly — she almost became a statistic. Molly almost died in the early morning hours from a “SH event,” a Severe Hypoglycemic seizure that required EMS intervention and help from a fast-acting spouse. Instead of me trying to retell the story, here’s a link to Molly finally telling her story in her own words in DiabetesMine this August. If you or someone you know lives with Type 1 diabetes, you must read this. Of course, you’ve probably had this happen. My wife has called EMS for me but I have avoided a seizure or trip to the ER.

Here’s a life-and-death detail of Type 1 diabetes:  1 in 20 people, an estimated 2-4 percent and 6 percent in patients younger than 40 years old, will die from severe hypoglycemia.  That’s having a low blood sugar that produces seizures, coma and death. Of the estimated 3 million people in the U.S. with type 1 diabetes, that’s approximately 150,000 people. That’s like wiping out Chattanooga, Tenn. or Rockford, Ill. — wiping them right off the map.

The prevention of a ” hypo event” is a deadly serious issue for T1Ds who strive for tight blood glucose control. That’s the catch-22: The better your control is and the lower your A1cs number is, the better chance you have of avoiding the serious, medical consequences of diabetes ( amputation, heart attack, stokes, and blindness to name a few).

The better your control, however, the higher the likelihood of low-blood sugar events (hypoglycemia).  Wearing Insulin pumps and continuous glucose monitors (CGMs) all serve as valuable tools for T1Ds in the quest for tight control. However, reading Molly’s near-fatal “bedtime story” makes it clear to me: even the best informed and compliant PWDs ( persons with diabetes) will experience severe lows and their insulin pumps will continue to infuse insulin until the patient or an attending EMS tech turns it off manually.

That’s where the Artificial Pancreas and its Safety Supervision System can provide real technology solutions. And that’s why the AP must be available and soon.

Severe Hypoglycemia Event Data

Molly’s Severe Hypoglycemia Event.

The figure ( reprinted with permission from Molly) shows the course of her near-death experience and how  the system would have intervened. Sixty minutes before the ” severe hypo” event the safety system would have alerted the patient and stopped insulin. This alert — think of it as your home’s monitoring system — can send a signal to the patient. And if the patient is sleeping or in what I call a ” diabetes fog — unaware of the pending crash.” it could send an alert to a caregiver or spouse via the system’s remote monitoring capability.

I first met Molly in the summer of 2010 when I enrolled in my first AP clinical trial at UVA. Molly, and her trials colleague Mary, are bright, engaging and positive people. Thanks to Molly and Mary, I’ve enjoyed every minute I’ve spent in the UVA trials — as an in-patient and out-patient. And even though Molly reminds me, gleefully, that her alma mater James Madison beat my alma mater, Virginia Tech, in a football game recently in Blacksburg — I can’t imagine going back to UVA in the future and not seeing her smiling face.

Molly gets ” the need” for more clinical trials and why the Artificial Pancreas is so critical to our long-term health. For all T1Ds who wake up at 2 or 3 AM to treat a low blood sugar and sit in the kitchen wondering what happens the next time our sugar drops below 40,  we know why the AP and better technology must be available in the United States. The safety shutoff is available to insulin pump and CGM wearers NOW — in Great Britain. It’s time for the United States to stop leading from behind and move to the front on diabetes technology and research.

Our lives — and Molly’s life — hang in the balance.

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