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Interview with Bennet Dunlap – FDA

As I mentioned yesterday, I have a lot of questions when it comes to the FDA and how I can be a better advocate and what can I do more?  I figured that if I had these questions, that I wouldn’t be the only one, so I decided to interview Bennet Dunlap.  There’s not much of an introduction that I have to give here, just read on.

This is a long post, but trust me, it is worth reading every word.

There is a followup post to this scheduled for this week, but we need your help in order to make that post happen.  If you have any questions, comments, concerns or anything else, please leave a comment or send me an e-mail via the contact form with your follow up questions for Bennet and we will post the answers next week. (more…)

FDA – Where to Begin, What to Do

As you may recall, I attended the Roche Social Media Summit last month in Indianapolis. This post is not 100% about that event, but a common theme and topic of discussion was the FDA. Whether it was a discussion of people being unhappy about their processes, or products being released 4 years earlier in Europe before they make to the States, or they feel overwhelmed and discouraged that they can’t read the documents and don’t know what they can do to help the FDA.

These are also all questions and concerns that I have. I have always wanted to be able to learn more about the regulation and governmental part of the diabetes industry, but I have always felt overwhelmed when trying to read any sort of FDA documentation. I always felt that these documents purposely add big and confusing words at the beginning to make me click the X button right at the very beginning. (more…)

Interview with Chelcie Rice – Diabetic Comedian

I recently had a chance to interview Chelcie Rice, a type 1 comedian.  You may know him on Twitter as @ChelcieRice (Diabetic Comedian).  Please take a chance to read on and learn more about Chelcie and his diabetes.  If you have any additional questions that you would like to ask him, please leave a comment and I will make sure that we get an answer for you.  Here we go…

 

For those that may not know who you are, please give us a quick introduction of who you are and what you do.

Chelcie Rice, Originally from Toccoa, GA (you’ll have to Google it) T1 diabetic. Been doing stand up comedy for about 12 years now.

When were you diagnosed with diabetes?

When I was 25

What were some of your first reactions when you were diagnosed?

I honestly didn’t know anything about diabetes. I didn’t even know my grandmother was diabetic until I was diagnosed. So I can’t say I knew how to feel. I had to learn that I really needed to manage my diabetes and at that time in my life I wasn’t quite ready.

Do you still hold some of those same feelings now?

I still get angry sometimes but I think I’m a lot smarter now that I used to be. Mostly because of the complications I have to deal with.

So, you are known as the “Diabetic Comedian”, how do you incorporate diabetes into your standup?

I only use that title on Twitter. Cause if I walked into a club with that tag I would never get any work! I write jokes about my own personal experiences with my condition. Many comedians make jokes about certain diseases without really knowing anything about it. By telling more personal stories, it kinda’ helps people who know nothing about diabetes gain more knowledge even when its based in humor.

Do you feel that using diabetes humor helps you deal with the stress of living with diabetes?

For me yes. I can’t say that every diabetic should use humor but it works for me and some others. I think every diabetic should find something to help them cope whether its humor, sports whatever.

Have you ever had to deal with a low blood sugar while on stage? If so, how did you deal with it?

It has happened before and it opened my eyes to how ignorant people are to the condition. Sometimes I have to go to the bar and ask for a glass of juice and have to explain why its an emergency. Then I get that blank stare from the bartender. People just have no clue!

Other than being a funny dude and managing diabetes, what other hobbies do you have?

I’m a bit of a comic book geek. I’ve been collecting since the late 80s. Around the time of the first Batman movie. I collect books for whatever reason along with records and I play drums.

In what ways do you use your comedy to help spread diabetes awareness / advocacy?

I’m working on a project called Sugar Free Comedy. Basically its been comedy shows to raise funds for diabetes research. I recently performed in Salt Lake City for the Diabetes Mixer and I had a blast!! I love my new friends in Utah!

Where can people hear / see come of your standup / comedy online?

You can search my name on Youtube and Rooftopcomedy.com

Where can people find you?

facebook.com/comedianchelcie, twitter.com/chelcierice

Any last thoughts or comments you would like to share with the diabetes community?

There’s a lot of negativity flying around the DOC and I think we need to kinda’ check our attitudes. We need to keep educating those that don’t get it and not let our disagreements keep us from helping each other. I’m not a “warm fuzzys” kind of guy so lets just keep the support going and help each other.

Leave any questions that you may have for Chelcie in the comments or send him a quick shout on Twitter or Facebook.

Take care.

I’m Over at Accu-Chek Diabetes Link Today!

Today I have the honor of having a guest post about Planning for a Vacation with Diabetes in Mind for the Accu-Chek Diabetes Link.  I encourage you to follow the link above and read the post.  Feel free to comment here or there about your vacation planning tidbits as well, we are all different and plan different as well.

I’m sure I can make improvements in my planning habits!

I just want to say thank you for Accu-Chek for giving me the opportunity to write this guest post.

*Disclosure – follow that link to read all about it.  For this post specifically, I was not paid by Accu-Chek in any way to write this post.

Guest Post – Definitely Not Your Normal First Year of College

Today I have decided to share a guest post with everybody.  About a year ago, I received a message from my blog from a girl who was just recently diagnosed with diabetes in college.  I asked her recently to write a guest post about her first year of college, and just like the title says, it’s not a normal first year.  The reason why this story touches me is because I went through basically the same exact stuff my first year of college.  Well, enough of me talking, here is Lauren Kaphengst – @LaurenKaphengst .  Hope you all enjoy and feel free to leave her comments.

Definitely Not Your Normal First Year of College

My first semester at Grand Valley State University was much like that of any other college freshman.  I had no shortage of friends with incredible people in my dorm and joining Sigma Kappa Sorority.  However, by the end of Christmas break, I had lost a total of 30 pounds.  My mother thought I was just walking more around campus and eating different food now that I was away from home.  My friends, however, thought I was bulimic (they didn’t tell me until months later).  I had all the usual symptoms we all now know about, but I just thought, hey I’m busy so of course I’m tired, thirsty, ect., you know, the usual.

February 4th, 2011, I had a routine checkup with the clinic on campus (that I almost cancelled because who really wants to walk 25 minutes in the frozen tundra that is West Michigan). Later that night was President’s Ball, so I just wanted to do my hair, put on my new dress, and party with thousands of other students from my university.  The Physician’s Assistant who was seeing me, after some normal tests, told me my urinalysis was positive for glucose.  Alone in the Campus Health clinic at the age of 19, I was told I might have diabetes.  After a blood test and many tearful phone calls, I learned later that day my A1C was 13.7 and I was in fact diabetic.  The PA gave me prescriptions for Metformin and a glucometer and sent me on my way.

I still went to President’s Ball that night.  My frantic mother drove the 3 hours the next morning to come get me, and I convinced her that I did not need to go to the hospital, despite her persistence.  I met with an endocrinologist three days later, on a Monday that I would have normally had Anatomy, Psychology, and Biochemistry lectures.  She told me that I have Type 1 Diabetes and I was immediately put on insulin, and to throw away the useless pills from the PA.  After more tears, especially during the first few shots and finger pokes, I was back at school as if nothing had ever happened.

When I was first diagnosed I thought diabetes was going to rule my life, and it did for a while.  I didn’t go out, drink like many of my friends, or even exercise because it was just too hard.  I put on a courageous mask, told my friends no, I am not bulimic, and tried to pretend I didn’t hate my life. Every finger poke was a challenge, my best friend would threaten to check my blood sugar for me when I reached the 5 minute mark and still hadn’t released the lancet. And the insulin pens and needles, I was definitely not their biggest fan. Eventually I came to a wonderful realization, I had an incredible group of people supporting me and slowly, I got through it.

This has been the craziest year of my life.  I am now living in the sorority house, ready to start the nursing program in August, and I actually go out on the weekends.  In my other life, my A1C is 7.0, I’ve been on the Medtronic insulin pump since July (which is incredible and everyone should get one!), and I have yet to be hospitalized.  It is a difficult life to adapt to; the ‘so, why do you have a beeper?’ questions or watching people almost pass out when you start to check your blood sugar (really its only a drop, come on).  Now, hiding my pump while wearing a dress on Saturday night, carb counting, and explaining my life to those who just don’t get it, are second nature.

I am a Sophomore Nursing Major at GVSU, a member of Sigma Kappa Sorority, Vice President of Fundraising for Rock Against Rape, Vice President of G.A.M.M.A. (Greeks Advocating the Mature Management of Alcohol), and a Type 1 Diabetic.  I know my life will never be “normal,” I will always have that last aspect that labels me, but now after one year, I’m okay with that.

The School of Hard Knox – Guest Post from The Poor Diabetic

Today’s post is a guest post from my good friend The Poor Diabetic
.  If you haven’t read The Poor Diabetic before, than you are missing out.  Ronnie’s posts are fun, educating, and just down right awesome.  I met Ronnie for the first time out in San Diego for the Roche Social Media Summit.  After speaking with him, I have been wanting a guest post from him since.  So here we go, on the subject of diabetes education.

I have been a diabetic for about 14 years and the real life experiences that come with that has to account for something when it comes to diabetes education doesn’t it?

Yet a newly diagnosed diabetic is more apt to listen to a first year medical student or a nurse practitioner than they would me right?

The reason is obvious, they purport themselves to be medical professionals and  I do not, In fact I like many other diabetic blogs you read go the further to proclaim this in bold print. The reasoning behind this is obvious as well, someone’s health is of primal importance and giving health advice should be left to said professionals. Woe unto you if you give  medical advice with adverse critical results, it is not just a moral issue but a criminal one as well.


But there is something to be said about life experiences when you are living with a chronic disease like diabetes.

It would be an understatement to portray the lack of diabetes education as a mere lacking.

Truth be told most if not many newly diagnosed patients have little if no knowledge of diabetes beyond the passing fancy and I would venture to say that this knowledge one has is fifty percent fact and fifty percent lies, myths, misconceptions, rumors, or any of the many unknowing words you might use to characterize it.

The learning curve after a diagnosis is steep at best and the learn on the job mentality if you may while it might be wrong is the accepted norm.

If I was to share a typical diagnosis it would be as though I was reading from a prepared script.

“ You have diabetes, you need to check your blood sugar using this machine, watch your carb intake, exercise and good luck to you” make an appointment with a nutritionist for your diet adjustments and a nurse will show you how to use your life saving gadgets other than that you are on your own and If you have any questions then I will be happy to answer them on your next visit six months from now. goodbye and good luck” This was my diagnosis story and am sure it was yours as well with a few minor variations.

I was left with very little in alternatives and back then the web was at its infancy, there was no diabetes websites or education resource or the DOC to say the least.

I learned diabetes management the hard way and even with all the online resources available today diabetes education still has a long way to go just to be proficient.

It would be naïve for me to say that a solution to this problem would be one broad stroke of the brush, the problem is a bit complicated than that. But I have one tangible and easily attainable solution.

The Medical profession is overworked  this we know to be a fact, it is for this reason and many others that most newly diagnosed are left to fed for themselves as it may.

These new diabetics are inevitably going to get online to find information on diabetes so why not steer them to the DOC and real diabetes information online.

The benefits for this process will go along way in laying the ground work for a  real diabetes education

Guest Post – Hope Warshaw Diabetes Education and Educators

Diabetes Education and Educators: Who, What, Where and How?

Brief intro: Hope Warshaw, MMSc, RD, CDE, has been a dietitian and diabetes educator for more than 30 years. She’s the author of several books about diabetes care and healthy eating published by American Diabetes Association. She’s currently on the national board of directors for the American Association of Diabetes Educators. She’s a member of Diabetes Advocates (www.diabetesadvocates.org) and is passionate about building bridges between diabetes educators and the diabetes online community (DOC). Check out her interview with DOC leaders filmed at AADE 2011 (http://presentdiabetes.com/etalk/Joy-Pape-Hope-Warshaw-Interview-t4441.html#-1). Connect with Hope at www.hopewarshaw.com.

 

Stats show only 30 to 40% of people with diabetes in the U.S. ever meet (that’s even once) with a diabetes educator or attend a diabetes education program. What’s up with this? Oh let me count the reasons!

Even though Medicare and many large or small employer-based and individual health plans cover the services of diabetes educators (at least a few hours a year), far too few primary care providers (the people caring for the vast majority of people with diabetes, especially type 2s) make this important referral. Plus too few people with diabetes know about diabetes educators/education. It’s likely you do, so we’re hoping YOU will help spread this important message.

It’s my goal here to make sure you know who diabetes educators are, where they typically practice, how to access us and how YOU can take action to increase PWDs access to diabetes educators throughout the U.S.

Who are diabetes educators?
Diabetes educators are credentialed health care professionals who are most often nurses (including nurse practitioners, clinical specialists), dietitians, or pharmacists. A scattering of diabetes educators are social workers, psychologists, exercise physiologists, physical therapists or physicians.

Many diabetes educators make the choice to obtain the additional credential as a Certified Diabetes Educator (CDE). Another credential is BC-ADM, Board Certified in Advanced Diabetes Management.

Unfortunately there are far too few U.S.-based diabetes educators (<30,000) for the growing population of people with diabetes (excess of 18 million diagnosed, 80 million with prediabetes).  AADE is the multidisciplinary professional organization of diabetes educators (http://www.diabeteseducator.org). Learn more about AADE and about the field of diabetes education. As you’d suspect, a goodly number of diabetes educators are PWDs.

How diabetes educators can offer an assist?
You know this first hand…taking care of diabetes is a relentless 24/7/365 job which requires you to be in the driver’s seat making hundreds of decisions about your care each day. Study after study shows that people with diabetes can stay healthier with frequent and continual education and SUPPORT.

Working with diabetes educators has the potential to:
– help you learn more about diabetes in general and your diabetes specifically
– assist you to analyze your BG/CGM records and think through options to improve control
– be a shoulder to cry on when you are burnt or bummed out
– serve as your advocate with other HCPs
– be one of your cheerleaders or coaches.
Plus, they can help keep you up to date on the latest research, medications, devices, technology and more.  (I’ll admit it, I’m a bit biased!)

Where are diabetes educators?
Diabetes educators most often work in diabetes education programs most typically found within the campus of a hospital/medical center out-patient clinic. You’ll often find a few diabetes educators working together in a program – most commonly a nurse and dietitian. These programs are often referred to as diabetes self-management education (or training) programs, abbreviated DSMT or DSME.

Due to the current evolution of how and where healthcare is/will be delivered, where diabetes educators practice is changing. More educators and programs are and will continue to be found in large primary care provider offices (duh? That’s where all the people with type 2 diabetes are), in pharmacies, supermarkets, and other convenient locales.

Eventually I believe there will be more online and telephonic education and support offered by educators. Mobile health (mhealth) will offer even more opportunities. AADE has just embarked on an exciting mhealth program with AT&T to deliver DSMT via AT&T mobile devices (http://www.diabeteseducator.org/About/Media/09.12.11_Release_-_mHealth_project).

Is diabetes education a covered/reimbursed Medicare or health plan benefit?
Medicare and many other health plans require a DSME programs to be “recognized” by a Medicare accredited organization to cover/reimburse the service. To date there are two major accrediting organizations for DSME, American Diabetes Association and American Association of Diabetes Educators.

Medicare and many other health plans cover/reimburse a limited amount of diabetes education. Medicare covers up to 10 hours of DSME within the first year of your diagnosis of diabetes and then an additional two hours in consecutive years (link to Medicare.gov).

You may be eligible for coverage of another service called medical nutrition therapy (aka nutrition counseling). Medicare beneficiaries who have diabetes are eligible and many health plans also cover this benefit.

Laws passed in most states across the country require private health plans mandated by state law to cover some diabetes education (http://www.diabetes.org/living-with-diabetes/treatment-and-care/health-insurance-options/health-insurance-in-your-state).

If you believe you should have access to diabetes educators/education and it is being denied, talk to your health plan or your worksite health benefits plan administrator. Today, most people with a health plan can have access to some diabetes education.

How to find diabetes educators/programs?
To find a “recognized” DSME program approved by American Diabetes Association in your area go to: http://professional.diabetes.org/erp_zip_search.aspx?utm_source=WWW&utm_medium=GSA&utm_content=keymatch-Diabetes-Education&utm_campaign=DP). You’ll come to a screen to search for programs in your area.

To find a “recognized” AADE program in your area, go to http://www.diabeteseducator.org/ProfessionalResources/accred/Programs.html. From here go to your state.

Want to Help More PWD Access Diabetes Educators Across the U.S.?
Here’s the current problem: Medicare regulations only allow reimbursement for diabetes education to Medicare beneficiaries within a DSMT in-person program and not directly to individual credentialed diabetes educators (those with the CDEs and BC-ADM). This restricts where and how diabetes educators can practice and restricts access for PWDs.

To fix this AADE is forging ahead to change the Medicare regulations (Title XVIII of the Social Security Act or Medicare). The goal is to authorize direct reimbursement to credentialed diabetes educators for DSMT provided in-person and via telehealth (a growing method of delivering healthcare to people in small and rural communities) under Medicare out-patient services (Part B). 

The legislation is the Medicare Diabetes Self-Management Training Act of 2011, (House Resolution 2787, Senate Bill 1468). I ask that you support AADE’s effort to widen PWDs access to diabetes education/educators. Learn more about HR 2787 and SB 1468 and contact your Representative in the House and your two Senators to request their support of this legislation via AADE: http://www.diabeteseducator.org/PolicyAdvocacy/Federal_x_State_Legislation.html. Take one more action (30 seconds) to show your support for this important legislation. Sign on to the petition: http://www.thepetitionsite.com/1/support-access-to-diabetes-self-management-training/

In conclusion, if you’re reading this blog you likely value the support you get from the diabetes online community (DOC). Perhaps you follow the diabetes news and connect with PWDs on twitter, Facebook and other social networking venues. Social networking has created an exciting and dynamic venue for PWDs to give and get support. In addition, consider connecting with a diabetes educator on an ongoing basis as another vehicle for supporting your efforts to take the best possible care of your diabetes and you through the years.

Recap of Guest Post Week

Last week I was on vacation all week.  I went to a McDonald’s the first morning I was there to access the free wi-fi and that was the last time I connected to the internet.  I went on my phone every so often when I was bored and was waiting for people to get ready to go somewhere, but that is about it.  I don’t think that my automatic tweet was set up so I wanted to re-post all of the guest posts from week.

Monday – Cara, Country Girl Diabetic

Tuesday – Crystal, Randomly CapitalizeD

Wednesday – Christopher, A Consequence of Hypoglycemia

Thursday – Sarah Jane, Sarahndipity

Friday – Diabetic Parents

Also, last Thursday I had a guest post on Diabetes Mine.

Enjoy reading

Guest Post – Diabetic Parents

Today’s guest post is from Diabetic Parents.

Parenting for us is full time job. So is diabetes. But luckily diabetes doesn’t ever outshine some of the best moments we’ve had as parents. From their first smiles to the silly things they do and say now that their older.

But perhaps the best moment in parenting is watching them grow and learn. As a parent you get the opportunity to be an active participant and an unfortunate bystander to their learning and growth.

It’s hard to watch them learn by trial and error. I remember the times when as babies they would spend hours…even days trying to learn to roll over, crawl, or walk. The frustrated look on their faces just wanted to make you pick them up and hold them close. (Which we will admit to caving in and doing on occasion). You wanted to do everything for that child….but couldn’t. They had to learn this on their own. And it was hard to be the bystander that couldn’t help. They had to do it on their own. As they get older it only gets more difficult to watch them try to tackle a new hobby, get hurt by a good friend, or struggle in school.

But even those moments can’t be tainted by the great moments of parenting. As I write this my labrador Sadie and my son are curled up at the end of my bed watching cartoons. My daughter and I went to watch our first “girls only” movie together. The preschool graduations, and the successful performance of that first school play. The morning hugs and kisses, and the bedtime giggles as we talk about our day when we tuck them in at night. The Sunday morning wrestling matches between Dad and son, and the quiet talks between daughter and Mom. These moments can’t be tainted by a hard day at work or nasty blood sugars.

Parenting is the one job that you wouldn’t want to ever give up or trade. We are so grateful for those precious moments that make our day worth it. I couldn’t imagine a more harder but more life changing job. We can’t imagine our lives without our two children. It’s impossible now that we’ve had them to imagine life without them. We thank our children all the time for the lessons they are teaching us. And we in turn hopefully are teaching them.

Scott and Traci are the owners of www.DiabeticParents.org and their blog http://blog.diabeticparents.org. Scott has had Type 1 diabetes for 28 years (since the age of 4). Scott and Traci have been married for 9 years and have two children. And two dogs who think they are children. They write from their seperate and combined experiences on how diabetes affects them as a person, a spouse, and as a family. You can read more about them on their blog and find more resources available for couples and families with diabetes on their website.