Elle And Coach

040bf717d0da3d6a2fe11a0e36453408I thought that this would be an easy book to read and an easier review to write.

After all, Michael J. Fox explained:

“This book is so much more than a heartwarming story about a triumphant girl and her amazing dog. It’s a book about never giving up hope.”

I’ve read about hope. I’ve read about people with diabetes and their triumphs. Add a dog to the mix and even more entertaining. Easy.

I couldn’t get through the first chapter without sobbing. I had to put the book down and walk away. Once I got up the gumption to attempt a second chapter, I found myself wiping tears off the pages.

Stefan Shaheen, Elle’s mother, wrote this book about her daughter with help from Mark Dagostino, a NYT bestselling author, but it was Elle’s diary entries beginning the chapters that impacted me the most. Chapter 1, Diagnosis begins with:

“I was so scared. I actually thought I was going to die.” – Elle, age 12.

I don’t know what it’s like to have a child diagnosed with Type 1 diabetes, although The Kid is four and we don’t know what the future will bring.

I do know, however, what it’s like to feel sick and think you are going to die. I scribbled in my diary at twelve:

“I’m drinking a lot of OJ and water. A lot. I’m thirsty all the time. I’m tired all the time. I don’t know what’s wrong with me. I know I should tell my parents, but I’m scared.”

Reading of the days leading up to her diagnosis sent me back in time to my own pre-diagnosis days. For those of us who live with a chronic illness and can remember those days before, it’s a tough chapter, regardless of the chronic illness you have.

The lack of knowing what’s wrong, but knowing something is not right is universal when it comes to health. Elle’s attitude and her parents’ attitude were normal, because nothing is never normal again.

The second chapter was also difficult for me, because Shaheen delved into the statistics that I abhor. These statistics need to be shared and shouted, because diabetes is an invisible illness. Many of us work very hard to “look normal” and not let diabetes rule our lives, but the book eloquently shares how diabetes doesn’t care how you look or if you want a break. Elle’s first diaversary was also her first seizure.

I wanted to kiss Stephany when she shared her frustrations about daily life with diabetes and how disruptive it can be – and not in the way one would think. It’s not just checking blood glucose and ingredient lists; it’s hours arguing with insurance or pharmacies or ferrying supplies to different locations. It’s the constant nagging feeling in the back of your mind: “What’s the latest blood glucose? Did I give too much or not enough insulin? Where are the juice boxes?” It doesn’t stop. Ever.

The grin slowly grew as I read:

This cannot be as hard as it seems, I thought. It’s 2007, for crying out loud!

And then the grin faded as she shares the heartbreak of Elle apologizing for a low blood sugar. I apologize to John all the time when I’m low. It was painful to read the reaction from a loved one. I don’t get to see it from the other side.

Elle does get a service dog named Coach, and I don’t think I’m going to give away any spoilers in sharing that he has assisted her in her daily diabetes management that goes beyond what a continuous glucose monitor can do.

And here’s why I love this book: this is not a “…and they all lived happily ever after.” Stephany doesn’t pollyanna this experience; she was reluctant to get a service dog.  Elle was denied by a camp director going back to a summer camp that she attended post-diagnosis before she got Coach. Elle still has diabetes. (Wait, is that a spoiler?)

The story is heavy on the Shaheen side of the family (they are a prominent family from NH; Stephany’s mother is a member of Congress and former Governor) and detracts from the story of Elle and Coach. (Elle’s dad has a brother with Type 1 diabetes, but after a few brief mentions, is excluded from the remainder of the book.) Not everyone gets to meet Dean Kamen and Michael J. Fox and other celebrities without the connections the Shaheen family developed through politics. The side stories were superfluous.

It also focuses solely on the early days of diagnosis with a young child. Even though the final words are written six years after Elle was diagnosed, very little is said about her life with diabetes now. How is she adjusting to being a teenager with diabetes? No burnout? How does a diabetes alert dog factor into dating? Not even a post-script from Elle. That was disappointing.

Elle & Coach is not about finding a cure for diabetes. It’s about finding what works until that cure is found. For Elle, it’s Coach.

My final thoughts: Go get a copy. I highly recommend it. Keep a box of tissues handy. You’ll need it.

 

7 Noteworthy Diabetes Clinical Trials Recruiting NOW…

elixir-1312949-639x468Clinical trials are the only way that we are going to get better treatments, better devices, and better…cures.

Here are seven noteworthy diabetes clinical trials recruiting now that you might want to look into and see if you (or anyone you know) might be eligible to volunteer.

Click on the titles of each trial to get more info straight from the ClinicalTrials.gov website. 

(Remember… some clinical trials may have you take a placebo in lieu of the investigational drug. Some clinical trials may require extra visits, invasive testing, and travel. You need to think about what the benefits and risks are for trial participation. That being said… nothing ventured, nothing gained.)

Repeat BCG Vaccinations for the Treatment of Established Type 1 Diabetes

The purpose of this study is to see if repeat bacillus Calmette-Guérin (BCG) vaccinations can confer a beneficial immune and metabolic effect on Type 1 diabetes. Published Phase I data on repeat BCG vaccinations in long term diabetics showed specific death of some of the disease causing bad white blood cells and also showed a short and small pancreas effect of restored insulin secretion. In this Phase II study, the investigators will attempt to vaccinate more frequently to see if these desirable effects can be more sustained.

Eligible volunteers will either be vaccinated with BCG in a repeat fashion over a period of four years or receive a placebo treatment. The investigators hypothesize that each BCG vaccination will eliminate more and more of the disease causing white blood cells that could offer relief to the pancreas for increased survival and restoration of insulin secretion from the pancreas.

If you’re interested and meet the criteria (and the location, as the trial is being conducted in Boston and requires weekly injections for the first year… don’t know if you can do this at home…), you should send an email to: diabetestrial@partners.org

This is Dr. Denise Faustman’s lab and website. Check out the details and what she’s doing.

Multiple Daily Injections and Continuous Glucose Monitoring in Diabetes (DIaMonD)

Evaluate if addition and use of real time continuous glucose monitoring (RT-CGM) improves glycemic outcome of patients using multiple daily injections (MDI) and self monitoring blood glucose (SMBG) testing, who are not at target glycemic control.

If you are on multiple daily injections, this might be a great opportunity to participate in a really interesting study if you are willing to wear a continuous glucose monitor (CGM) and possibly a pump. Check out the inclusion/exclusion criteria and locations, then send an email or call to either:

Eileen Casal, RN, MSN 858-875-9774 ecasal@dexcom.com
 David Price, MD 858-875-9525 dprice@dexcom.com

A Trial Comparing Continuous Glucose Monitoring With and Without Routine Blood Glucose Monitoring in Adults With Type 1 Diabetes (REPLACE-BG)

The primary objective of the study is to determine whether the routine use of Continuous Glucose Monitoring (CGM) without Blood Glucose Monitoring (BGM) confirmation is as safe and effective as CGM used as an adjunct to BGM.

This study will determine if we can actually make treatment decisions based on our CGM alone when we feel it is accurate, not verifying it with a finger-stick blood glucose check.

This. Is. Huge.

Why? Because one of the reasons why Medicare, Medicaid, and some insurance companies refuse to pay for a continuous glucose monitor, claiming it’s just an adjunct to a blood glucose meter and we still have to check to make treatment decisions. (And we know better, don’t we?) This trial has a lot of inclusion and exclusion criteria, but seriously… if you can do this, you will help the entire T1 diabetes community get access to this device.

Contact either person for more info:

 Katrina Ruedy, MSPH 813-975-8690 kruedy@jaeb.org
 Nhung “Leena” Nguyen, MPH, CCRP 813-975-8690 nnguyen@jaeb.org

Glucose Variability Pilot Study for the Abbott Sensor Based Glucose Monitoring System-Professional

This is to trial the Abbot Libre system, which is a sensor with “flash monitoring” for individuals with Type 2 diabetes. How cool is that? They currently need participants in the following locations: San Diego, Detroit, Kansas City, MO and Pearland, TX. If you meet the criteria, shoot Dr. Karinka an email for more info and get enrolled.

Shridhara Alva Karinka, Ph.D. 510-749-6393 shridhara.alva@abbott.com

A Study To Assess The Safety Of PF-06342674 In Adults With Type 1 Diabetes

If you are a newly diagnosed (within the last two years) adult (over 18), you can participate in a Phase 1 clinical trial for a biological drug, examining safety issues. Again, look at the criteria and locations, then if you are interested, call:

Pfizer CT.gov Call Center 1-800-718-1021

Please refer to this study by its ClinicalTrials.gov identifier: NCT02038764

In-Clinic Evaluation of the Predictive Low Glucose Management (PLGM) System in Adult and Pediatric Insulin Requiring Patients With Diabetes Using the Enlite 3 Sensor

This is a Medtronic study for their next step in the artificial pancreas technology pathway. (And hello… “Enlite 3 sensor!”)

All subjects will undergo hypoglycemic induction at Visit 2 with target set to 65 mg/dL using the rate of change basal increase algorithm. Low Limit setting when PLGM ON is 65 mg/dL.

The more patients willing to participate in artificial pancreas technology trials, the faster this technology will become available! Take a look at the locations and criteria and if you’re able to do this trial, contact:

Julie Sekella (818) 576-5171 julie.sekella@medtronic.com

Along those same lines…

Hybrid Closed Loop Pivotal Trial in Type 1 Diabetes

This is a BIG. DEAL. for people with diabetes in the United States. If on this trial, you get to wear the MMT-670G insulin pump, using it with the closed loop algorithm.

Closed Loop. Closed Loop. Need we say more?

Contact: Thomas P Troub(818) 576-3142 thomas.troub@medtronic.com to get involved.

There are so many studies out there that need our help. We help ourselves AND all people with diabetes. Do what you can. If you can’t participate, share this post with someone who might be able to volunteer.

Two Minute Diabetes Advocacy: 21st Century Cure Act + CGM

708615_95129272One hundred years ago, those of us with Type 1 diabetes would be pushing up daisies. Pining for the fjords. Deader than doornails. Not living.

Today, thanks to amazing researchers and the advancement of technology, we are living longer, healthier lives. We are living in the 21st Century. No flying cars or Jetson butlers, but yet… we are making headway, at least on the healthcare front. But we need your help.

Here’s your two minute diabetes advocacy challenge for today.

(Less time than it takes to pop some microwave popcorn!)

The 21st Century Cures Act is a bipartisan (meaning both Democrats and Republicans are interested, which you know is rare!) attempt at vaulting U.S. healthcare into this century by changing the ways drugs, devices, and treatments are approved and marketed. It’s a whopper of a draft bill, currently, with five sections:

  • Title I—Putting Patients First By Incorporating Their Perspectives Into The Regulatory Process And Addressing Unmet Needs
  • Title II—Building The Foundation For 21st Century Medicine, Including Helping Young Scientists
  • Title III—Modernizing Clinical Trials
  • Title IV—Accelerating The Discovery, Development, And Delivery Cycle And Continuing 21st Century Innovation At NIH, FDA, CDC, And CMS
  • Title V—Modernizing Medical Product Regulation

If you want to read all 393 pages of the bill, have at it here.

There is a section for “Breakthrough Devices.” As The Regulatory Explainer (an amazing site!) explains:

As with breakthrough drugs, breakthrough devices are those which represent “breakthrough technologies,” are intended to treat conditions “for which no approved alternative exist,” offer “significant advantages over existing approved or cleared alternative,” are “otherwise in the best interest of patients”  and/or have the potential to “reduce or eliminate the need for hospitalization, improve patient quality of life.”

Continuous glucose monitors (CGM) fall soundly into that category and are currently covered under many private insurance plans (and some state plans), but once you age onto Medicare, if you have Type 1 diabetes and use a CGM, say good-bye to your coverage of that device. Out-of-pocket is your only option, and it’s cost-prohibitive. As people with Type 1 diabetes live longer, we are seeing that the tools that will help us most are not being offered by CMS/Medicare. This has to change.

We need to ask the Energy & Commerce subcommittee to include continuous glucose monitor (CGM) coverage for Medicare participants in the 21st Century Care Act.

Here’s where you can help in less than two minutes. (Throw that popcorn into the microwave right now.)

Got Twitter? Yes? Go!  

(No? Sign up for Twitter and help raise your voice to your representatives in Congress. They do listen! But it will take a little longer than microwave popcorn.)

Hit the start button on your microwave.

1. Click here. (http://www.stripsafely.com/the-twitter-page/) and read the quick info on that page.

2. Find out if your state representative is in the Energy & Commerce Subcommittee list on the page. (If you don’t know who your rep is, click here and enter your zip code. Voilà!)

3. Find your state and your rep and click on the “CGM in 21st Century Cures” and TWEET!

4. Share that page with everyone you know. (Look for the SHARE THIS link at the bottom of that page.)

5. You’re done. Carefully open that bag of microwave popcorn; contents may be hot!

Thank you for letting your representative in Congress know that including CGM coverage for Medicare participants is the right thing to do. No one should be denied coverage of this breakthrough diabetes device because of age!

Snap Decision

You grab a pack of gum at the checkout counter. It’s an impulse purchase and you don’t think about it. It’s a snap decision, made right then and there.

Choosing an insulin pump is anything but a snap decision. You research all of your options, talk with other people who wear pumps, weigh the pros and cons of each pump, and of course, find out if insurance will cover your pump and supplies.

In my case, my insulin pump choice was a snap decision. With a capital S.

unnamed-3The Asante Snap pump. 

After my warranty expired on my previous pump (Of course, it was pining for the fjords five weeks later.) and an opportunity to try the next generation of that company’s pump, I recognized that I needed to do further investigating. I’d only worn two brands of insulin pumps in the over 15 years of pumping. I am still happy with the choices I made back then, but back then, I didn’t have a lot of choices.

I cheer the fact that we have more choices now when it comes to insulin pumps and continuous glucose monitoring devices. Each pump and CGM has its strengths and weaknesses, which of course, means that some people will choose them based on their own needs, wants, and desires.

Here’s why I chose the Asante Snap Insulin Pump.

I Am Ricardo Montalbán

You can’t “test drive” a piece of gum. You buy it and if that new flavor isn’t what you wanted, you throw it away or foist it off onto someone else. It’s gum, right? Costs a buck? Pshh. Get outta here.

But it’s rare (or in some cases, impossible) to test out an insulin pump. This device is going to be a part of your life for a hopefully good, happy, healthy long time. And it’s not cheap. You choose a pump based on what you think it will do for you, go through the hoops (and oh, are there big, flaming hoops!) to get approval from everyone involved, only to find that… you hate it. I know some individuals who have returned their insulin pumps before the “trial” period is over, but it’s a big, ugly hassle and insulin pump companies don’t make it easy.

Asante gets that you should be able to take a pump for a test drive. Feel the rich Corinthian leather seats. Determine if what you want is what you actually get. They offer everyone who is interested in trying the Asante Snap pump a four-week free trial, including supplies, training, and support. I got to sit in the driver’s seat and go for a long drive. I wish all pump companies would do the same.

No More Rebel Yell Time In Range!

The four-week free trial is one thing. It’s another thing entirely when you discover that by not changing a single basal rate or bolus factor, that your time in range with your blood sugar skyrockets. (And when I say skyrockets, I mean supersonic space age shiny skyrockets.) Having the luxury of a Dexcom CGM allows me to see how my blood sugars play nicely (or not nicely) during the day. I was doing a lot of Billy Idol hair spikes. Without changing my eating habits or dosing timing, I saw spikes turn into smoother lines and when I downloaded my Dexcom (Finally able to do it on my Mac!), I was shocked. 80% time in range (for me, range is 70 – 180, but I’m already tightening the higher end).

Less lows. Less highs. All of a sudden, I wasn’t exhausted at the end of the day, chasing the blood sugar dragon. My head was clearer. I had energy. I thought it was a fluke, but after almost 8 weeks on this pump, I’ve come to realize it’s two things: the Asante Snap pump algorithm and the pre filled glass cartridges making this happen. I can’t take any credit for better blood glucose levels.

 Heart of Glass

The pre-filled glass cartridges not only help the insulin not degrade and lose potency as quickly as the plastic cartridges I once had to fill; it also cuts down on the time I used to fiddle around with pump  set-up. Doesn’t seem like a big deal, right? It’s a big deal. You get that I’m a two-minute sort of woman when it comes to diabetes.

Instead of the elaborate ritual of drawing up the insulin into a plastic cartridge, checking for bubbles, filling the tubing, checking for bubbles, priming the pump, checking for bubbles, I drop the cartridge into the pump body and it auto primes. In two minutes, I can complete an insulin pump set up, including a new insertion set. All that extra time I have now? I can rock out. 

(And I don’t have to hunt for a battery in the bottom of my purse. The battery for this pump is built into the pump body. You replace the pump body with the changing of the cartridge. Easy.)

I’m not the only one who thinks this is a good thing. I join Scott Johnson of Scott’s Diabetes, Melissa Lee of Sweetly Voiced and others who have switched from other pumps to Asante. Here’s what some people had to say about how easy it is…

The Little Things Add Up to Awesome

It’s the little things. A customizable color screen. A built in flashlight on the pump for those early morning BG checks. A missed bolus calculation if you stop your pump for a shower. (I never realized how much insulin I had missed even disconnecting for 20 minutes.) The ability to set alarms to NOT go off at 3am to wake you up to remind you to change your cartridge.

Some people prefer an integrated CGM and insulin pump. I tried it.  I’ve come to realize that I’m a Dexcom chick, tried and true. The other pump company with an integrated system has not yet updated its algorithm for increased accuracy. Plus… here’s the thing: The Dexcom G5 screen will be accessible to view on my iPhone I won’t even need to look at my pump to see my CGM graph.

When I was at AADE last summer and saw a glimpse of the future with Asante Snap (I sat next to Wil and we got to ooh and ahh at the demonstration, they announced not only would they be partnering with Dexcom for future upgrades, but they were the first company hooked up with Tidepool. (And you know how much I love them!). And then they blew everyone’s socks off my demonstrating bolusing the Asante Snap from an iPhone. I’ve never had a remote bolus device. I am totally ready for this. And when it does happen, it won’t cost me an arm and a leg (or a pancreas) to upgrade, because upgrades are $99. Straight. No chaser. 

I got to design my Snap. (Well, I got to have input. The Kid actually decided on the colors.)

No Pump is Perfect

No insulin pump is 100% perfect. (If it was, it would be called a pancreas and this blog wouldn’t exist.) I do miss the vibrating alarm option I had on my previous pump. I am a little jealous of other pumps that do have remote bolusing devices. I am a lot jealous of the current integrated pumps and CGM systems that work well. And I can’t upload my data at home; Asante currently uses the clinic version of Diasend.

I’ve talked with the management team at Asante. I’ve asked questions about their future models. They listen (and they even have a patient advisory board so they can get feedback). I see the Asante Snap becoming more perfect soon.

IMG_5863Time. In. Range.

Oh… that time in range. That blissful time in range that makes me feel more rested, less stressed, and looking forward to getting my A1C done. That makes it all worth while.

My new time in range makes my diabetes management easier and less about diabetes and more about me. 

Best Snap decision I’ve ever made.

I talked to Asante so much and gushed about how much this pump has improved my life that I’ve agreed to enter into a consulting agreement with Asante Solutions to write about my experiences pumping on their website. Please check the updated About page  for disclosures. Remember: My thoughts are my own. No one can make me write what I don’t feel or believe in on this blog. In fact, I get zero compensation for this – or any – blog posts on this blog. This is MY blog. MY words. MY thoughts. You get to read the uncensored version – always. 

I Don't Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology – and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation – a two-way conversation – and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.