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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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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UVA Artificial Pancreas Team Receives $3.4 Million Grant; Technology Aims To Transform The Lives Of Type 1 Diabetics

A high-tech project at the Center for Diabetes Technology at UVa to turn an ordinary smart phone into an artificial pancreas that could transform the lives of people with type 1 diabetes has received a $3.4 million grant from the National Institutes of Health.

The Center For Diabetes Technology Team at UVA

The Center for Diabetes Technology Team at UVA is part of a worldwide Artificial Pancreas Consortium working to bring a safe and high-tech Closed Loop System to Americans with Type 1 diabetes in the next few years!

The money will fund a new network approach to artificial pancreas design using distributed computing between local and Cloud systems that will allow real-time adjustment of insulin delivery based on the individual’s needs. The grant will also fund three clinical trials at the University of Virginia and at Stanford University that will advance the project toward its final goal of offering people with type 1 diabetes – in which the body does not produce enough insulin – an automated way to monitor and regulate their blood sugar.

“This project approaches the artificial pancreas not as a single device but as a network of local and global services working seamlessly together towards the optimal control of diabetes,” said Boris Kovatchev, PhD, of the University of Virginia School of Medicine and the Center for Diabetes Technology.

The artificial pancreas was developed at the School of Medicine by a team of researchers led by Kovatchev, the director of the UVA Center for Diabetes Technology, and Patrick Keith-Hynes, PhD. The device consists of a reconfigured smart phone running advanced algorithms, linked wirelessly with a blood glucose monitor and an insulin pump, and communicating with Internet services in real time.

The system’s developers intend for it to monitor and regulate blood-sugar levels automatically, report to a remote-monitoring site and link the user with assistance via telemedicine as needed. This would save users from having to stick their fingers to check their glucose levels multiple times a day and eliminate the need for countless syringes to inject insulin manually. The physicians on the team – Bruce Buckingham, MD, of Stanford, and UVA’s Stacey Anderson, MD, and Sue Brown, MD – have tested the artificial pancreas system in successful outpatient trials in Virginia, California and in Europe.

University of Virginia Press Release


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Clinical Trial At UVA Marches On: Giving My Blood, Time And Type 1 Diabetes For Artificial Pancreas Research

Writing a blog about living with Type 1 diabetes and promoting the need for clinical trials — is not exactly front-page cybernews. It’s OK to admit that I’m blogging for a very limited audience: Me, myself and I. We R the Cure is dedicated to finding solutions, sharing current research news, and spotlighting the need for more persons with Type 1 diabetes to participate in clinical trials.

I’m not seeking publicity or the spotlight. Participating in these studies does, however, sometimes make me feel like Steve Martin’s character in the 1984 movie, ” The Lonely Guy.” Am I the only guy doing this?

Last Thursday at dawn, I traveled to Charlottesville for my in-patient “Metabolic Challenge” hospital admission on Day 17 of the ” Behavioral Mechanisms of Glucose Variability” clinical trial at the Center for Diabetes Technology at UVA. The good news: I completed the study parameters by providing my blood to the researchers as they raised my glucose level above 250 mg/dl and then lowered it below 60 mg/dl to see how the human body responds to glucose swings. “Greater understanding of insulin sensitivity, particularly how the body counters a low blood sugar,” will help researchers and technology experts determine how to refine the math calculations or ” brain power ” needed for the Artificial Pancreas system, according to the UVa team.

So, let me give you the Top 5 newsworthy or ” BIG PICTURE” results from my in-patient day.

Number 5: I did not wear the new DexCom 5 CGM prototype for the admission as originally planned. The manufacturer was not ready to release it for human trial just yet. The next generation DexCom 5 sensor will transmit its glucose readings directly to the AP’s SmartPhone and not to CGM transmitter. This is a key step in closing the loop on the closed-loop AP.

Number 4: The DexCom 5 should be available for testing in upcoming AP clinical trials, hopefully as soon as Feb. 2014. If the DexCom 5 is tested in trials then it sets up the important next step: Setting up “AP home trials” for out patient clinical trials in 2014-2015. A final step on the pathway to FDA approval.

Number 3: To be a clinical trial participant, it helps if you don’t mind having up to 2 IV catheters plugged into your arms. And, you need to ” enjoy ” having blood drawn every 5 minutes during the critical ” high” and ” low ” period of the variability study.

Number 2: It was rewarding to spend a beautiful fall day “inside” at the old UVA Hospital — with the awesome team of researchers, doctors, nurses and clinical trial coordinators. These folks are first-class and extremely talented. A sincere “Thank you” to Dr. Anderson, all of the nurses and staff at the Clinical Research Unit, and the CDT team (Laura, Mary and Molly).  And they served me a fabulous Salmon lunch when I was done!

Number 1: My blood data, CGM readings and insulin pump trend lines will be reviewed and the numbers will be crunched by the CDT team at UVA. I am contributing to a larger, multi-layered, worldwide consortium effort designed to bring the first-ever Artificial Pancreas to the commercial market — and thereby providing better health outcomes and an improved quality of life for the 3 million Americans living with Type 1 diabetes. Laura Kollar, clinical research coordinator and RN with CDT team, added this wrap up to my visit: “Just wanted to thank you (and your amazing blood) for the admission yesterday. You done good!”

It may not be newsworthy, but it’s a worthwhile contribution. Call it a legacy. Together, We R the Cure.

Here are some ” BIG PICTURES” of my day in my hometown, Charlottesville.

Mike Anderson at UVA Rotunda

The Clinical Trial is done at about 4 pm and I can enjoy a beautiful fall afternoon and a Starbucks coffee in Charlottesville, my hometown.

Keeping Record of Highs and Lows.

Keeping track of the blood glucose ” highs and lows” during my Clinical Trial at UVA.

Glucose Variability

My blood samples are lined up at UVA Hospital during Clinical Trial on November 7. It looks like a lot but the total volume taken is about the same or less than a normal blood donation.

Artificial Pancreas Clinical Trial

Automated blood machines are used to analyze and report on my blood glucose levels and other key metabolic factors during my in-patient admission.


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The “Highs and Lows” Of Type 1 Diabetes Clinical Trials: Some Days You’re the Windshield; Some Days You’re The Bug

LauraRNMike2

Laura Kollar, right, Clinical Research Coordinator and Nurse Manager at UVA, spent her Saturday morning guiding the health screening for trial participants at Barringer Wing. Thanks Laura!

As I ponder the current ” Ups and Downs” of my participation in a new Type 1 Diabetes Clinical Trial at UVA, two quotes come to mind. One comes from a famous figure in American history; The other comes from my father, a UVA alum known for his wit and wisdom throughout the Anderson clan in Virginia.

“Do not put off till tomorrow what can be put off till day-after-tomorrow just as well.” — Mark Twain

“Growing old ain’t for Sissies.” — Howard Anderson

I think both are fitting words for the inconvenience, effort and the amazing satisfaction that comes from giving your own blood, sweat, and sometimes a few tears to help researchers move us all one step closer to finding a ” Cure ” or high tech solutions that will improve the quality of life for persons living with T1D.  Last month I joined a new clinical trial at UVA’s Center for Diabetes Technology — my sixth trial since August 2010 — titled “Biobehavioral Mechanisms of Glucose Variability.”

Trial participants will track their insulin sensitivity results over about one month and travel to Charlottesville for an in-patient stay at UVA Hospital to measure,  through continuous blood analysis, how a person responds or counters a high and a low blood sugar. A greater understanding of these issues will help researchers, doctors and digital technology leaders finish key parts of the Artificial Pancreas project — a closed-loop insulin pump technology designed to better control glucose levels in T1 diabetics and reduce the serious medical complications of diabetes.

BarringerWingUVA

On a Saturday morning in October, I waited outside Barringer Wing at the old UVA Hospital complex for my health screening to start. It is always a very emotional and cool feeling for me to be back at Barringer — I’m walking the halls where my mother and father were on the day of my birth back in 1961.

Participating in a clinical trial is a volunteer labor of love. No one forces you to sign up. ( Attention: We need more people to sign up for clinical trials all over the world!! ). You are able to step out of a trial at any point. The truth is: it’s amazing to participate in cutting-edge medical technology like the AP and I’m hoping to benefit from the results of the research — automated glucose management that leads to better long-term health and less complications.

In a snapshot, here are the highlights of the first 3 weeks of my study. The BIG EVENT happens this week — when I complete my 12-hour in-patient stay at UVA hospital with the CDT medical team.

  • Week 1: Go to Lab Corp and get pre-trial blood work done and results shipped to UVA; Travel to Cville for health screen with medical team; Attach trial DexCom 4 Continuous Glucose Monitor (CGM); Go shopping at grocery store for pre-planned meals — breakfast, lunch, dinner and snack with exact carb, protein and fat grams — to be used for my 4 Insulin Sensitivity days; Do  “Twice” the number of normal finger sticks in order to record BG data in my trial meter and my own insulin pump meter — Ouch!
  • Week 2: Eat 2 tasty pre-packaged meals and record the exact food nutrition information on the spreadsheet provided by Stacey Anderson, MD — who is no relation to the Anderson clan but a cool coincidence that we share the same last name; Discover that the DexCom CGM sensor applicator — does not always work and actually draws blood from my abdomen site; Keep doing the finger sticks — 9 to 10 times a day for two meters and for calibration of the CGM — Ouch!
  • Week 3:  Get day off from work approved; Discover that the ” hidden gem ” of the trial study is NOT going to happen yet — wearing the DexCom5 CGM prototype in addition to the DexCom 4 CGM; The DexCom 5 is being manufactured specifically to work directly with the Artificial Pancreas SmartPhone — delivering blood glucose results to the SmartPhone and not to the normal CGM receiver. This is one of the remaining “closed-loop” research items to be completed before the AP can become commercially available.

For now, that’s my story. Stay tuned for my next blog post and photos — from the in-patient glucose variability trial at UVA this coming week. Remember — We R the Cure. We R the ones who will make a brighter day for Type 1 diabetics.

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