Insulin Costs…..Today May have been the Day the Tides Turned…….Time Will Surely Tell

If you have any feeling whatsoever about the ongoing problem of the cost of Insulin, you must find a few hours to sit and watch Priced Out of a Life Saving Drug: the Human Impact of Rising Insulin Costs which was a Subcommittee on Oversight and Investigation of the Energy & Commerce Committee held on Tuesday, April 2nd.

It was riveting, engaging, informative, and I was left in tears, literally tears, at the brilliance and well-spoken representatives speaking on behalf of our diabetes community.  I honestly do not have the names of all of them but the ones who spoke the most; Dr. Cefalu from the American Diabetes Association, Dr. Kowalski from the JDRF, Christel Marchano-Aprigliano from DPAC; and there were others, Doctors, Patients, and people who understand living with diabetes in a world of increasing costs of Insulin; were nothing short of a very loud unified voice of reason mixed with a huge dose of reality.

Virtually every member of Congress attending this meeting came with the statistics about their home area.  They were ready to state the problems of what they were hearing ‘back home’ but as one watched the hearings continue something happened.  Something rare and extremely wonderful happened.  Very early on in the proceedings, The Committee was not so interested in stating what little they knew about diabetes in their own state anymore, they stopped; they listened.  They had willingly become the students.  And our diabetes teachers were nothing short of brilliant in their lesson plan,  Because their teacher……..was life.

Because every one who was up there representing…..well……us, who have or have a loved one with diabetes, via statistics, facts, personal stories, and representing thousands of other voices, rang true in the ears of our congressional leaders…….there is a problem, a big problem.  Hear us.

And I do believe Congress did.

Looking for transparency to understand where in the financing-chain is the mechanism to make sure that these ‘savings’ will get to the patient is just a step in the direction needed to be taken.  It’s not a single entity’s fault nor is there a simple solution.  Individual after individual pounded away as a boxer does with their opponent on the ropes, emphasizing that congress needs to be involved to change these parameters, that people are dying because they cannot afford insulin, or that they are dying while rationing insulin use.  Our speakers came with facts, figures, studies, and real life stories of what we all know already.

Each and every testimony from the invited panel painted a vivid picture for our congressional leaders to understand.  The Members of Congress were left with their mouths open, their minds open, and they, in turn, emphatically thanked each invited guest from our diabetes community.  They were not there from just the JDRF or the ADA or the Patient Advocacy Coalition; as I have never heard them before–they were there on Capitol Hill for you, for me, for us.

Bravo all…..and thank you.

Next week, this same committee has summoned the 3 main insulin manufacturers and the 3 PBMs (Plans Benefit Mangers) making up 80% of the proceeds to come to Capitol Hill and explain their point of view.

April 2nd 2019 may very well be the date to remember when the problem of the cost of insulin made it to Capitol Hill and Congress listened, and Congress acted.  Time will surely tell but holy wow, was I so proud of those who went up the Hill with one loud, unison voice of change.  Bravo to all of you and humbly, we thank each of you.

Anxiously we will await next week’s hearings.

I’m a DiabetesDad
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Should One Jump Into Using New Diabetes Tools

I spend a great deal of time getting in and out of machinery that when, or should, they malfunction the results are usually disastrous.  But still, it’s not uncommon to see me getting in or out of an automobile or doing the same with an airplane.  I’m a guy who plays averages and I figure the deck is stacked in my favor to complete any trip.

Of late, I have read people sharing very horrifying stories with various diabetes management tools.  Leaks, malfunctions, kinked tubing, site pulls, transmitter malfunctions, and just about any other such mishap that causes management tools to not operate as they should, as is expected, as is anticipated.

As my flight times increased, I did a good deal of research to find out what turbulence means, what makes a plane stall, how safe am I?  I was pleased to find out that chances are pretty good that I will get from one place to the other, safely.  In fact chances are very good in my favor.  How much are you influenced when you read about some of the amazing diabetes management tools and their ability to malfunction?

Step number one, as in getting behind the wheel of a car, know that what you are dealing with is a machine.  A good, perhaps great, machine; but a machine none-the-less.  Machines need to be taken care of with maintenance and good care and in most cases optimum results will be the result.  But machines can also breakdown.  Be ready for these times.

In doing my homework about traffic safety, I learned that over the last decade (as per the Institute of Insurance Safety) about 35,000 people die on average on the US roads annually and of the top six major causes, 4 were completely preventable.  Speeding, drunk driving, distraction, and cell phones top the list so avoiding those should make my trip that much safer.

The point is this.  I’m always going to get in my car.  I’m always going to get in an airplane.  I know the facts and the facts are in my favor.  Know this about ‘THAT’ device you are looking at for your child.  Do your homework, know the pitfalls, know the risks.  At the end of the day, it’s still easier to fly to the west coast than walk.  My guess is that there are many great diabetes management tools available to help get through the day.
Try them.

I’m a DiabetesDad
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Absence

Recently I had knee surgery, I will have more upcoming and at the end of the day, and rehab, it will be a very good thing.  As I spoke to my Doctor on my follow-up visit he said something which has resonated in my mind since he said it. He said that they had cleaned up my knee and the area where arthritis was present, they did the best they could because arthritis is the absence of something that cannot be put back.

The absence of something that cannot be put back.

On this day ten years ago, we lost my dad.  My dad was bigger than life in so many ways and he was surely not without issues…….but hey, aren’t we all? The journey of life includes a pathway of sorrow saying goodbye to so many we have loved.  Some too soon, well I guess all sooner than we want.  Sometimes we are shocked, sometimes when they pass and someone says, “I hope you find peace”, the fact they have been taken is the peace needed.  Death has so many different shapes in our lives.  As is said, it is part of living.  But it always leaves a mark of pain, doesn’t it?

On one hand, ten years passed very quickly.  On another, much, much has happened that Grandpa Honey has missed.  The void of someone who was once here is a sad notion to dwell upon, so we try not to but it is very important to remember who they are, who they were, and the life-long lessons they passed on to us.

My dad was huge with Little League.  He was the Little League Commissioner in Hempstead, New York, where we grew up.  Every year was the awards dinner at the end of the year and one year a mom and her son came to the dinner and there was confusion as the mom thought the kids were free and just the parents paid. In the hustle and bustle of all that happens at the onset of an event, signals were crossed, and the single mom was told that they both had to pay.

Word got back to my dad at the end of the night that she turned to her son and said “It is important that you are here, I will pick you up later”.  And she went home because they did not have the money for both of them to attend.  When my dad heard about the series of events, he was livid.  “How could we say we are a community and yet turn a mom away from her son’s big night”.  And here is where it became very interesting, dad took on the entire event as ‘his fault’.  Not because it was, not because he could not find out how it happened, but because it did happen and he should have made it his business to not only know, but make the correct decision and allow this single mom to attend.

It was the few times in my life, I saw my dad cry.

He made it his business to make sure that the family never paid for a Little League Registration, a dinner, a uniform, or anything else ever again while he was Commissioner, which was for years.  It was here that I learned a lesson that I have phrased and that many have heard me say many times, “It’s not about the money and if it ever becomes only about money, I’m gone”.  It was one of thousands of lessons where I was the student and my dad, the teacher.

I miss my dad.  He was a wise man.  He taught us all many lessons in life, for life, about life   Lesson of the day; love those you love, and show them and tell them…….and often; because without them will be the absence of something that can never be put back.
I’m a DiabetesDad
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A Defining Moment……..Can Happen at any Time

Have you ever had a defining moment in your life?  Something happened and at that instant you knew that things would never be the same.  Tragedy, or the diagnosis of a loved one with something that will change ones life forever comes to mind pretty quickly I’m sure.  But when not a tragedy but, rather, a calling.  Something happens that you are so sure of what it is and  that it becomes the loudest voice you ever heard?

Over the years, many people have asked me when I decided to be an actor.  Well the first calling, for sure, was in High School when I was in Godspell.  Performing in it, seeing it on the New York stage, and in the movies, reaffirmed my new-found love for the theatre. But the defining moment that this ‘acting thing’ was not only something I loved but something I wanted with my whole being was, in actuality, due to three friends.  Three friends who merely performed together and, yet, it was right then and there that I decided that I want to be able to do ‘that thing’ that touches people sitting in an audience chair; for the rest of my life.

A Chorus Line had such a profound impact on my life.  A show put to music about being in the theatre.  A show about what I wanted to do.  A show that celebrated the trials and tribulations of being a ‘theatre person’.  I wanted, more than anything, to be a ‘theatre person’.  As I watched a Chorus Line on Broadway I was riveted at every single line, every single dance step, every note sang, and every single word uttered.  The show was so incredible, but that show alone is not what won me over.

You see, my whole body was captivated by this musical and I knew that nothing could ever be that good, that moving, that engaging……..ever again.
Or so I thought.

When I was attending Hofstra University, three friends announced that the next number to be performed would be them singing At The Ballet, from the musical, A Chorus Line.
What? Are they crazy?  That song is perfection, I thought.  Why would they even attempt to even try to sing it?  It’s a very hard song to sing, harmonize, follow, and pull off. These thoughts raced through my head in an instant. But there they were, Stacy Parker, Nancy Haas, and Karen Waldstein ready to begin the song.  No fear on their faces.  They glanced at each other, smiled, and the music began.

They sang and my life would change forever.

Those three magical and heavenly voices have stayed with me, as if it were yesterday, for over 40 years.  Lesson number 1; I learned that performance is based upon the confidence to move forward.  You have to take what is given and run with it.  Now Stacy, Nancy, and Karen may have been scared to death to perform that song but it showed nowhere.  Lesson number 2; if you are scared, don’t show it.  Do your preparation and run full steam.  Lesson number 3; because someone may have done it before you, does not mean you should not try also.  Lesson number 4; allow your heart to be touched by any performance.

Now when I hear that song, it’s not the three actresses from the Broadway Show that make me smile, it’s the faces of Stacy, Nancy, and Karen singing a song that touched my heart. Were my three colleagues better than the Broadway actresses? That didn’t matter, and it’s not my point (but should you be asking, they were pretty damn close).  What mattered was how they touched my heart. That is the picture in my mind. I will forever be in their debt and I thank them from the bottom of my heart.

My lesson in theatre is also a lesson in life.  Sometimes we are so petrified to ‘try something’ that we stand idle and do nothing at all.  Do your homework and go forward, you may be surprised and it very well may be that what you do will be what is remembered.
Food for thought.
I’m a DiabetesDad
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Transparency, No Matter What is Announced, That’s All Folks

Lilly Announced in a press release that they were reducing the cost of Humolog Insulin by half, bringing the vial cost to $137.35.  You can read the release here.  Needless to say, the social media world erupted with everything from praise to disdain at the news.  Me, well quite honestly, it left me scratching my head with more questions than answers.  To be clear, and at the onset, if more people can now afford insulin…..GREAT!

Not sure how a vial of insulin costing less elsewhere, and probably everywhere elsewhere, is considered a reduced price at $137.35.  I mean I get it if one purchases the insulin here in the United States, the new cost ‘looks’ cheaper.  This $137.35 is for those who only pay out-of-pocket and not through insurance plans.  Okay—so I ask, what is the real price?  Is it REALLY discounted or only discounted to the much over-priced American cost?   If those nasty PBMs are not involved, tell us the real cost—-is it anywhere near $137.35?

I have no problem with anyone making money.  But when something is so precious as life-cannot-continue-without, I’m stating until we know true costs, we have no idea what is real or made up.  Was a competitor soon-to-announce lower costs?  Was something happening within the industry that what we are seeing today was/is destined to happen anyway? Is there a difference between Insulin Lispro and Humalog?

Let’s just not be so quick to give out such credit.  Not just yet.

To me, it’s either the right price, or it isn’t.  I’m not saying that this is not a start, of course it is.  You see what I do not believe, is that Lilly is doing this because they care for those who are in need, although to be fair, Lilly is surely doing more than their competitors.  Lilly is a business, and they’re answerable to their share holders and if this move was to dramatically impact their stock negatively, it never would have happened, bet on it.  What do they know that we don’t.

So for now, take the news, but do not be so quick to think it is about us, those impacted most.  It’s not.  Not sure what it is, but time will surely tell, won’t it?  When I see some transparency, and not before, will I believe we will see some real changes.  When I see something needed to LIVE, and without it one will perish; nothing short of making that readily available to all will be enough.  It’s not how it used to be.  Take all of the complex formulas on this nonsense and throw them out the window.  One can make money on the cost of Insulin, that is not the problem, but like the pork insulin of yester-years, so many do not have to make pigs of themselves.

That is, IF they really cared.

I’m a DiabetesDad
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Lawsuit Against Insulin Companies Can Move Forward…..Tick Tick Tick

Below is the press release from Hagens Berman Sobol Shapiro LLP.  They are a consumer-rights class-action law firm with 10 offices across the country. They have won quite a few cases in the history of these type cases.The release is below with permission.

I spoke to a representative of the Law Firm tonight who stated that it is hoped that during ‘the discovery’ stage as this case moves forward, that practices not in the light today, including the PBMs and those practices, will come to light in full transparency.

While Steve Berman (Law Firm Partner) accused the benefit managers of being complicit, he said the lawsuit focused on the drug makers because “they are playing the game, and they are the ones who publish the list price.   (Link is NY times article including the quote) it very well may be that based on what is found in the discovery stage that the PBMS could be added as defendants.

In the 210 page complaint it states:

  1. Plaintiffs seek monetary relief against defendants in an amount to be determined at trial. Plaintiffs also seek punitive damages because defendants acted wantonly in causing plaintiffs’ and class members’ injuries or with such a conscious indifference to the consequences that malice may be inferred.
  2. Plaintiffs also seek an order enjoining defendants’ unfair, unlawful, and/or deceptive practices, attorneys’ fees, and any other just and proper relief ……….

Read the release below and after it is a link to the law firm as they are looking for participants in other states to join, as ordered by the court.  Have your story heard.

NEWARK, N.J. – Today, a federal judge’s opinion has greenlighted a national class-action lawsuit filed against Sanofi, Novo Nordisk and Eli Lilly for their systematic overpricing of insulin and concealment of a behind-the-scenes arrangement orchestrated to hike insulin prices, according to attorneys at Hagens Berman.

Hon. Brian R. Martinotti, U.S. District Judge for the District of New Jersey granted in part and denied in part the drug companies’ motion to dismiss the case. The opinion allows state law claims from plaintiffs – people living with diabetes who Eli Lilly, Sanofi and Novo Nordisk have forced to pay skyrocketing insulin prices – and gave attorneys representing them ability to address concerns regarding individual state representation. To the extent the court requires a patient from each state, attorneys say they can and will add clients to satisfy the court’s concerns.

Regarding the plaintiffs’ state claims, Judge Martinotti’s opinion read, “This Court finds Plaintiffs have adequately alleged fraudulent, unfair, or unconscionable conduct.” The court also held that the plaintiffs “adequately pled an ascertainable loss.”

The lawsuit states that in recent years, Sanofi, Novo Nordisk and Eli Lilly have raised the sticker or “benchmark” prices on their drugs by more than 150 percent. Some plaintiffs now pay almost $900 dollars per month just to obtain the drugs they need, according to the firm.

Hagens Berman filed the first-of-its-kind lawsuit in 2017, detailing several accounts from patients resorting to extreme measures to survive rising insulin prices, including starving themselves to control their blood sugars, under-dosing their insulin, and taking expired insulin. The complaint also detailed how class members having intentionally allowed themselves to slip into diabetic ketoacidosis – a potentially fatal blood syndrome caused by lack of insulin in the body – so that they can obtain insulin samples from hospital emergency rooms.

Steve Berman, managing partner and co-founder of Hagens Berman, was named co-lead counsel in the case by Judge Martinotti.

“In general we are pleased with the decision because we can now bring consumer protection claims in most states,” Berman said. “This ruling also clears the way for us to begin obtaining discovery from the manufacturers and PBMs so we can shine the light on exactly what has driven insulin prices sky high.”

“This ruling blows the insulin racket wide open,” he added.

The complaint states that this once affordable drug is now out of reach for many patients due to a behind-the-scenes quid pro quo arrangement between drug makers and pharmacy benefit managers (PBMs): “increased benchmark prices are the result of a scheme and enterprise among each defendant and several bulk drug distributors. In this scheme, the defendant drug companies set two different prices for their insulin treatments: a publicly-reported, benchmark price and a lower, real price that they offer to certain bulk drug distributors.”

Click this link for this press release and scroll to see what other individuals from what states are sought.

If you have a story—-now is your chance to tell it.

Might it be that we may see this come to an end.  Sadly, as this moves through the courts and appeals, many others will die as they ration their insulin, or outright cannot afford it and cannot obtain it.  But it is a step.

Tick….tick….tick…..the clock is ticking, let’s hope they all do what is right sooner rather than later……..and even sadder, why has it come to this?

I’m a DiabetesDad
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Thoughts on that ‘Walmart’ Insulin

I have been reading some VERY INTERESTING comments on social media regarding the “insulin sold at Walmart”.  Some even using actual scare tactics that I’m not so sure should be used by anyone, nor does anyone any good.  Still not so sure why THAT is even being done.

To be clear,  Buying these insulins IS NOT an alternative to the dilemma of the high insulin costs.  What IT IS, is an alternative to dying because one cannot afford insulin. 

There are many things I have read over the years that leaves me scratching my head.  But I have also learned that how one manage their diabetes, or their loved ones’ diabetes ……is……well……up to them. If you can find a way to make the insulins work that Walmart sells, more power to you.  When Kaitlyn was first diagnosed, those insulins were pretty much all there was to manage the disease.  In fact one was actually ‘pork insulin’.  Twenty-six years later, here we are.

It will take an adjustment and a doctor should surely be involved….as always.  And it will probably be a pain in the ass. These certainly are the older generation of insulins, and so they don’t provide quite the same coverage for blood sugars. They have a shorter half-life than name brand insulins and they do not come in pens. They can peak in two hours and may need a 30-60 minute lead time….like I said, a pain.

You will also be better served by finding a way to obtain the insulins that are available today.  But if you cannot afford it, if the cost-reduction programs that the companies offer do not work for you, if you have tried government programs, senior centers (if applicable), and community and social programs for help and if there are no options…..and the only option is NOT TAKING insulin, well THAT is not an option at all.

Now please do not come after me with pitchforks and torches.  TO BE CLEAR: NOTHING SHOULD STOP THE PRESSURE BEING MOUNTED AGAINST THESE HIGH COSTS.  But I would not want it on my conscience that someone read something that I wrote and did not at least try it because of what I said…..and died because they went without.  There is a difference between ‘stop-gap’ action and a substitute for.

I’m still unsure why the government cannot relax the restrictions for buying insulin abroad until such time that those who are so ‘piggy with greed’ can find a balance.  Because this dilemma is bad, stupid, and inhumane.  Like the air we breath when denied, will kill us; so too it is a death sentence to not have insulin affordable to those who cannot survive without it.  THAT THOUGHT HAS NOT CHANGED. Why some bright lawyer has not figured out a way to sue over that, is also beyond me.

WE WILL ALL KEEP FIGHTING.  YOU must find a way to stay alive.  My prayers will continue and my actions will stay in full force until we find this rectified.  And if there is something out there to try with your doctor’s help as oppose to doing without…..I choose trying.  That is my point today,
I’m a DiabetesDad
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Small Time Becoming BIG TIME…..Diabetes Community’s Perfect Song

There was a movie with Tom Hanks making the rounds a years ago entitled,
That Thing You Do.  Wikipedia describes the movie; A small-time rock band rides a big wave of success with the help of a savvy record-executive and a catchy single.

You? You’re the small time rock band.  The savvy record executive are the voices who started this outcry.  And the catchy single is the unfairness of insulin prices.

The movie is about this small town group, with just a small voice keeps pushing and riding and yelling from the mountain tops that they have a good song.  Finally, a company called PlayTone (starting out as fictitious record company for the movie and actually established in 1998 by Mr. Hank and friends) signs them and pushes them to the top.  Had the voices not been there early on, the success would not have occurred.

Now read this first line from a Reuters article two days ago, and read it carefully.
Powerful committees in the U.S. Congress held hearings on Tuesday on insulin affordability and high prescription drug prices, an issue both chambers have said is a top priority for the year.

You did that.   Yes, you!

Before all of the many large organized diabetes groups jumped on board; and just as in the movie, you need big time to take you to the big time and they are a welcome site, there was just you.  You who have diabetes or have a child with diabetes first said, This is unfair, the current costs are going to be hurtful.   You wrote letters, you protested (even by yourself), you posted on social media…..you…..the voices in the diabetes community….before anything that occurred, became organized, or became unified……it was just you….that one voice who cared enough to “just not do nothing”.

So there is surely much work to happen yet.  But before all the big guns jump out and send press releases telling you of their wonderful efforts…….and they surely were and are wonderful efforts……..I just want to add a word of thanks to all those who one will not read bout, see, or hear about.   But know this, with no uncertainty, without those voices to tell the stories of rationing, cutting insulin doses, and simply doing without when no one else thought it cool enough or news worthy enough; we would not be here today.

Like I said…….more to do…….but thank you diabetes community, your voices are about to turn into a roar.  A number one hit no matter how you look at it.

I’m a DiabetesDad
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Legislation on New Bill to Tax Air we Breathe

In a very discreet and without fanfare congressional move, both houses today passed legislation that states commencing on January 1, 2020 there will be a tax placed on each American citizen for the use of air which is part of the mainland United States.  Senator John Consigliere of Wyoming stated that the move was made to further be able to pay for the many means of purification now needed for breathable air……………….

…….okay……got your attention??????

Stupid isn’t it that something so needed would have any cost to use it?  Something we would die without.  So needed for us to live that it does not make any sense to think we would have to pay for something we have to use to stay alive.  There will be no tax, there is no such Senator from Wyoming.

BUT for goodness sake can someone, anyone, possibly explain to me that people who need insulin to live; in some cases cannot get it due to cost.  If you think about it, there are many, many medications you can take to make your life bearable and better.  Some could die, if the med was not  taken.  But every single person—–EVERY SINGLE ONE of those who live with type 1 diabetes would die if their insulin was not available.  Some sooner than others.  And here’s the story, some have died already.

One was too many–and why?
Because of GREED!!!!!!!!

What does the government need to see to step in here.  Until a solution is reached, let’s call on the government to relax any and all legislation that prevents people from using whatever means necessary to obtain affordable insulin.  If an executive action can get a wall built (well, ok, threaten to anyway)….cannot the same action open the boarders, ease the restrictions, open the floodgates to allow insulin to be purchased at an affordable price?????

Once we figure it all out, we can backtrack a little but until such time, an emergency act can save lives and surely……it will!

Send this everywhere you can.  Until such time that we have an answer, this is an emergency action, an executive action. to save lives.

This is not a favor to make life comfortable.  This is an act of government/congress/senate/executive to allow insulin to be purchased……..at the end of the day, to so many, it’s as important as air.

I’m a DiabetesDad
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Cheerleading for Diabetes Awareness, with a Heart Bigger than Texas

It was exciting to learn that this year the NFL’s program My Cause, My Cleats would include the Diabetes Research Institute as Raven’s Tight End, Maxx Williams, would wear custom-made cleats recognizing the work of the DRI scientists.  This program allows NFL players to wear custom cleats in December.  In fact, many, many players take part and usually auction off the cleats to raise money for the charities they represent.  Quite a few diabetes organizations were represented in the NFL this year (Branden Jackson/ADA; Jarvis Jenkins/JDRF to name just two) and social media got into sharing so many of their stories.

As is the nature of social media, one never knows where a simple post will continue.  One story, and a video in particular, really caught on.  Interestingly enough, it was not a story about a football player, it was about a professional cheerleader.   As the
My Cause, My Cleats was being unleashed, The Dallas Cowboys Cheerleaders (DCC) were releasing an effort of their own called My Cause, My Boots.

And how social media responded. And how the diabetes community cheered the loudest.

As any football fan will tell you, ‘dem boots worn by the Cowboys Cheerleaders’ are as much known as the Dallas Star that is worn on the team’s helmet.  Run a little differently, DCC’s My Cause, My Boots is more about the cause than a particular organization and I was given the incredible opportunity to interview a member of the DCC who, as it would turn out, has a very special reason to discuss diabetes, and to take it from the sidelines to center stage.

Tess, thank you for taking the time to discuss your choice to use the DCC platform to bring awareness to type 1 diabetes.  How long have you been a DCC?
Tess: I have been a Dallas Cowboys Cheerleader for the past 3 years.

As I prepared for this interview, I learned that Tess was actually a dancer through all of her life and to me, what being a Radio City Rockette is to those who dance, a Dallas Cowboy Cheerleader is to those who have ever cheered.  It’s the icon for perfection in the industry.

Did all of the history play into your mind as you worked to become a DCC, how so?
Tess: I never actually cheered BEFORE cheering for the Dallas Cowboys.  I was on dance teams, but not cheerleading.  I danced all through college at LSU and in fact my first Dancing was at a LSU football game which was in the Dallas Stadium, coincidentally.

Yes it did play into my mind. You’re in the stadium.    But it was more exciting than it was intimidating. When I ‘did get the call’ (to be a DCC) being back in the same place it all started, and in this new and different role, was certainly a moving experience.

It’s no secret there is just so much outreach in communities all across the country with NFL Programs.  One, in particular is My Cause, My Cleats where players wear cleats adorned with their favorite charity in a special design. DCC came up with My Cause, My Boots?  Of course My Cause, My Cleats is a close relative to My Cause, My Boots…..can you share how the idea came about for the boots?
Tess: My Cause, My Boots came about, and as far as I know we are the first team which started last year with the boots.  It was just an idea.  We started by trading out one pink ‘star’ for one blue star on our vest and we had a pink star on our boot; and our directors thought it would be an incredible idea for us to choose our own causes.  And they worked with Lucchese Bootmaker, the official bootmaker for the Cheerleading Team, on what we could do with our boots for a cause close to each of us.  We had a pink star that first year and in the second year the thought was how to expand that original idea, and what else could we do with the star.  So, we gave them our cause and Lucchese Bootmaker was very creative in utilizing just that one star to not include various charities but also to be individualized to represent so many charities with so many different and unique designs.  They did all sorts of different ideas. I chose diabetes and sent them the ribbon with the blue and gray colors with the blood drop seen in so many places and that is all I did.  Their hugely creative team came back with the little red heart in the corner of the star.  Simple, direct, and powerful. So yes, we were the first team I believe to do something like this, we can only hope it spreads and more cheerleaders get involved.

Tom: When I first saw it, I actually sighed because it was very clear what it represented.  The phrase ‘Deep in the heart of Texas’ took on a whole new meaning.
Tess: Oh good, I am glad it was clear.

You did this for Troy, your boyfriend.  Could you share those series of events?
Tess: Troy and I met in December 2016 and he was diagnosed in September of the same year.  I was not there; the hardest and worst time at diagnosis…but since we met I have gone through this progression of being by his side.  I’m a big animal lover and last year I chose Animal Rescue as my charity as I have a cat I rescued.  This year, many of the team members chose to honor people they knew living with different diseases and I thought it would be a nice honor, a nice gesture, for Troy if I chose diabetes.  I thought it would be a nice surprise for Troy.  Again, I had no idea what the design would look like.  I never mentioned it, I never spoke to Troy about it.  He never knew about it until the boots were made.

Could you share a little of his reaction.
Tess: We all picked the causes in September, and did not know what the final result would be.  About a week before we received the boots, I shared with him, ‘Remember last year when I picked purple for Animal Rescue for my boots as a cause, this year I wanted you to know that I chose type 1 diabetes for you’.
It was a very special moment and we both became pretty emotional.  He was shocked, he couldn’t believe it.  They surprised us when the boot came and I rushed home and opened the box and it means a lot to me that you said you knew right away what it meant.  It was a very special moment when I saw the boots for the first time.  He was very excited, took pictures and sent them to his family.  It truly was just very special.  What I liked about it was that it was more about awareness of the disease as oppose to linking to a specific organization.  It was about honoring someone you know, someone who has the disease, and supporting THEM; and that was an incredible feeling.

So now, it’s out there.  The My Cause, My Cleats is out there and so is My Cause, My Boots.  You make your awareness video and the social media explodes.   What started as a simple gesture…..‘bam’ it goes everywhere…..what was that like?
Tess—I quickly realized, as I expected it to be, that it was going to be more than just a simple gesture.  Taking advantage of the platform I know that I have, that we all had being part of the DCC, and being able to reach more people and especially just to be a light to this whole community was overwhelming.  Last year the idea of My Cause, My Boots was new.  This year we had more media and people were expecting it.  My cause was highlighted by an accompanying video.  People were already sharing stories and reaching out to me saying they saw that I chose type 1 diabetes even before the boot, as a finished product, was being shown.  So, I knew from the get-go that this was going to be so much more than just me wearing a different color, or something different, on my boot.  I knew that it was going to reach a lot of people because this community is just so strong.  And because they lean so much on each other for support.  I have seen this before, I have seen this with Troy.  It’s a big thing to know others are out there and to also know you are not going through this alone.

I saw your video as you spoke about Troy and what he goes through with his t1d.  Being a father to two children with this disease, it was very moving.  Could you expand a little bit on what you see him go through, he’s an athlete……right?
Tess: Yes.  He plays baseball and played at LSU.  And played before he was diagnosed.  He was always an athlete and he was playing and also having type 1 diabetes before anyone caught it.  Maybe they thought he was too old so no one checked, no one is sure why, for whatever reason; he went on struggling with it without him knowing and without others knowing what it was.  He went to many doctors.  It took one really bad episode where his blood sugar topped out over 800 for everyone to realize what was going on.  He was 22 when he was diagnosed.  He quickly handled it.  He got this (his management) to where he could play.  Late diagnosis, but early enough.  And he played then, and he is playing still.

 

Tom–After him sharing all of that with you, what would you say to someone who was newly diagnosed?
Tess: I’m surely no expert at this but as I prepared to make the video, and learned what I needed and saw the video that I made had over 70,000 views, it just highlighted to me how much more I need to know and educate myself so I can figure out how to educate others.  As I learned from Troy, and I know you know Tom, I know it’s not my disease.  I can only do so much.  It’s Troy’s disease.  I can do just so much but what I can do is be there, offer words of encouragement.  I’ve seen him struggle with it but I also have seen him come out the other side and truly follow his dreams.  He keeps going.  We all see others succeed, even doing so with what burdens they have to bear having this disease.  Those stories uplift him.  He’s now one who can inspire others. He is the perfect example that you can keep going, it does not matter….you can do whatever you want.   He says, “The less you control it, the harder it is to control”.

My saying is that you must control it, or it will surely control you.
Tess—That’s a good one too, I have to share that with him.
(I laugh) Yeah but I have 26+ years at this…..he surely learned much faster than I did as a parent.  I’ve had a few more years at it for sure.

Now that you have started this, do you see yourself continuing advocating, helping, etc.?
Tess: Short answer, yes.  But I have so much more to know.  When I started this, I knew I had to become educated and I know I have to do more to understand what this disease is about.  I knew of this disease.  I knew there was a difference between type 1 and type 2.  But living beside someone who lives with it 24 hours a day is different.  I gained a new appreciation.  To know…..just……just how near death Troy must have been, was terrifying.  That’s something that was new to me.  Something that I did not know was going on.  I think that in itself is enough to bring awareness and I hope to raise resources to share that story because it’s incredibly powerful.  Maybe it can prevent someone from going through what he went through.  Maybe if they hear the story, they will see and know the symptoms whether it was a child, or an adult.  Even if someone says, “I heard something like this and do you think it might be diabetes”?  Even that would be an incredible start.   To educate.  I mean I have seen already, hearing ‘My child, my dad, my whomever…….’ is just so amazing to create a connection.  So yes, I will continue on this path and I know it’s a dream of Troy’s because he knows how important it was that people helped him.

Your video was spot on and resonated with many people.
Tess: I tried to stay focused on the person I knew and not try so hard to explain every aspect of the disease…it’s complicated and it means a lot to hear that we were close to the mark.

As I said—spot on the mark, if you ask me.
Tess:  Thank you that is good to hear.

As my readers know, I like to end my interviews by giving a word or short statement, and ask you to share the first thing that pops into your head, either one word or short phrase. Is that okay?
Tess: Sure

Diabetes?
Tess: Troy

Dance?
Tess: Love

Dallas, the City.
Tess: That wonderful skyline

Dallas, the Team?
Tess: Represented by Cowboy Hats.

Troy?
Tess: Strength

A newly diagnosed child?
Tess: Fear.

Thank you

Tess: Thank you for setting this up.  This is the reason for My Boots, My Cause and I hope this can continue and I appreciate the opportunity.

It’s very clear that this incredible couple will be heard from again, and again, and again in the future on this new journey.  A journey for diabetes awareness.  They will save lives as they continue to use their respective platforms to educate those who might not even know what diabetes is, what diabetes looks like, or even what the warning signs might be.

Saving a life, methinks, would be better than even winning a Superbowl.

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