Is SUCK IT UP too Rough to Ask……..What’s the Alternative?

I’m not so sure if it is the social media being so readily available or if people just like to gripe more……..not exactly sure which it is.

I read people who are so exhausted because they stayed up all night………….again with a child’s low blood sugar; I read people who are distraught because they hide in the parking lot so their child can partake in after-school activities; I read people who have had their life turned completely upside down because of their child’s diagnosis of t1d……..yeah……..and?

Children being diagnosed with diabetes is not a brand new ‘thing’.  It’s been happening for a long, long time.  Do you know what the next step was, we dealt with it.  Plain and simple; whatever it took, we dealt with.  The new normal is not just what happens in your child’s life, it is what happens in your life too,  The key word here is…….normal……..albeit…..a new normal.

Now every now and again, needing to let off steam or to find a shoulder that understand you to accept your tears of anguish; is not what I’m referring to here.  It’s the ‘every-single-sacrifice’ being shared once or twice a day as to how horrendous a life has become that just seems like a bunch of wasted energy.  Any parent that had a child with this disease has had to deal with the anguish with what comes with it.  I don’t mean to sound so cold as to say, “suck it up”, but I also do not understand the idea that one’s world can never function again because of this disease.  If you do that, diabetes wins.  Don’t let it win.
(To clarify–I’m not minimizing this disease and I’m surely NOT SAYING ‘suck it up’—-I am saying that the disease should not define our lives.  As my daughter stated at a very young age, “….I have diabetes, diabetes is not who I am…..”.  My point is don’t let it define you)

We all did WHAT IT TOOK for our kids to have as close to a normal life as possible and for the majority, our kids never knew what we did to get them there.  And if our kids never knew it, we certainly did not live our lives online.  I get it. Diabetes sucks…..it sure does.  But what sucks worse is when you show that it controls your life………because if it looks like it controls your life, it does control your life.

Kick it in the butt out the back door.

Now as I said, every now and again, we all need  release and a melt down and surely we earned it when that happens.  But not a constant defeat.  Not a constant life of woe.  Your kids will pick up on that faster than you think they will.  Many of us have always lived by what they do after diagnosis is what they would have done before diagnosis.  Adjustments? Sometimes but get your child in the game, in the play, in the after school club…….challenge yourself to get them there without anyone knowing what you did to get them there.  It’s about them.

Hey things could always be worse……….you could have two kids with t1d. Did that, done that…….and you know what……..we lived by the same philosophy…..try it.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Editor’s note: Updated for clarification at 8:00 pm on 8/10/19

Worse than Falling Off the Horse………I Missed CWD FFL

I have successfully landed in the land of physical therapy and am officially ‘post-op’.  At an eventual time in the not too distant future, I will land on my feet again….hopefully better than new; or at least better than my pre-op status.

I have learned that I’m not a good patient.

I find it hard that people have to do anything for me.  I was never good at it, and will never be.  I have always called myself a ‘give a gift’ type person, not a ‘receive a gift’.  The very idea of not being able to do for myself is worse than the operation itself.  Someone else cutting my toe nails makes me cringe beyond measure.

I was operated on Tuesday, June 25th.  It was my second operation in several months (I really did not fall off a horse, time just has worn away my knees leaving nothing but excruciating pain).  The first was pretty standard on the right knee, just minor. The pre-op MRI of the left knee showed that it was going to be a tad more difficult than one’s normal knee-replacement.  The standard 90 minute operation rounded out at just past 4 hours.  All is well but recovery would be long and I’m barred from airplane travel for months.   Easy for most, but I live in airports.  And LOVE doing what I do because all of it takes me to people who are doing wonderful things in our world of diabetes.  For my kids, for your kids, for you.  So being told I was grounded has been tough.  So saying, “stay off planes” is so much more than it sounds.

Originally I had the planning of the two operations perfectly planned leaving enough time to ‘get back in the saddle’ with plenty of time to spare.
Uhmmm…….no.
The worst part was when it became clear to me that CWD’s Friends for Life (CWD FFL) would have to be missed.  No one will ever know how crushed I felt as that realization set in.  As honestly and plainly put as I can say it, my kids are alive today because of what we learned at CWD FFL over the many, many, many years we/I have attended.  It has been my lifeline for years and anyone who knows me, also knows that fact.

The only thing worse was making that connection to Jeff and Laura informing them that I would not be attending. That would be the facing the reality that I was not going to be there, real.  After I let them know, I stared out the window for a long, long time wiping the tears off my face.  It was made a tad easier once the conference began and it was great to hear from so many during that FFL Conference week.  From the conference perspective, my absence was surely nothing more than a blip, if even that.  But TO ME, a piece was knocked out of my heart to not be in attendance.

As I recover, I think of so many who are going through such worse things than my present position and it shuts my mouth and keeps me working harder on what I need to do to get past all of this.  My body was saying…….this is the time to get this done, so I listened.

I’m almost self-sufficient again being less of a pain-in-the-butt to Jill, who has been nothing short of an angel caring for what I could not do for the time I couldn’t. I get stronger each day and continue to work at what I need to work at pushing the envelope; just enough to move ahead quicker but not do more damage in the process. I thank the so many who sent such warm wishes over the last month or so.  Your encouragement and caring words truly carried me through this, and I honestly share with you how important it was to hear from so many. I tried to stay low-key about this whole thing, and if you are reading this and not knowing what I am talking about, good, it’s really how I wanted it.

There is so much to do and it’s good to be ‘at it’ again. Too many people need advocacy, education, and a cure.  So onward.  And again, thank you for caring so much.  Let’s get back to work.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

When Life Takes a Drastic Downturn

 It’s a very humbling experience to be placed in a position that everything that you need to do….for you…..must be done by someone else.   Such was the case recently, the particulars will remain private but the bottom line, I was left in a state that I was completely at the mercy of those around me.  A 90 minute surgery went 4 hours and after that point, we were off to the races.

I will (eventually) be better than I was but I must share there is surely something bigger than us out here and when they decide to step in and play havoc…..havoc will indeed come in and play.

I have been on my own sinceI  was 20.  I’m self-sufficient to the point of stubborn and when you get to a point and your body says, ‘Nope, not gonna happen”, the results are pretty scary.  When I saw the surgeon and asked, “how’d we do?”.  I learned, first of all, don’t expect a rhetoric answer unless you are sure the question is one.  “My part went fine.”   The implication’s, of course, were that someone else’s job had not gone so well……and that was the truth.  I do not do well-being done for; or people doing FOR me.  But for now, I have no choice but to allow others to do that which I cannot do for myself. I actually really even enjoy giving Christmas presents way more than receiving them.  But for now I have no choice, the road will be long, it ended up the way it did, and here we are, recovering.

So this has lent me time to think, how well do our kids, diabetes or no diabetes, realize just how much was done for them and is done for them? How much we do as parents that, dare I say, is taken for granted.  Diabetes supplies, insulin, school trips, needed supplies, “I have nothing to worry about, Mom’s got this”.  “Mom’s my lifeline”.  Really?What if life suddenly changes for/on mom?  It would impact many I’m sure.

If there is one thing I learned over the last few days, is that ‘the best there ever was’ can have an off day and THAT can impact your life forever.  The people around you are all you have and there will be a time that you will need them……bet on it.  Make sure they know you care for them because when you look at them as they cradle you and tell you everything will be all right, it is at THAT moment of helplessness you find out how lucky you are that there are those who love you and care enough……….no matter what.
I’m one of those fortunate enough to have those people in my life and I thank them from the bottom of my heart.

 

 

ADA Scientific Sessions; a Lesson in Trust

Landing at San Francisco airport, it was a fearful realization for me to watch two planes come in for a landing at the same time (as in the picture which was taken at the same airport).  It seems that they are too close together to even land safely.  There is much trust between these two pilots; so close.  Being in one of them is a tad uneasy watching them slowly descend on the approaching runway, well I find that as cool as I do fear.  I felt the same thing this week as I went down the escalator into the exhibition hall of the 79th Scientific Sessions of the American Diabetes Association (ADA) in San Francisco.

Two escalators full of people side-by-side, going down two stories right to the entrance of the runway entrance to the hall.  Trusting in the landing.  Finding out what is new, what is exciting, and what is happening around the world of diabetes is also so rewarding.  The ADA, true to form, gave opportunity for sharing, learning, and even allowing some healthy debating for the benefit of all those in our diabetes world.  An exciting flight all around I would say.

One of the most interesting bits of information, I found, was subtle but it was there none-the-less.  It seems that whoever the ‘powers-that-be’ represent, they have declared the artificial pancreas is now officially dead and closed loop, and/or automated insulin delivery, is now the preferred term.  Far be it for me to say anything but I hated the phrase artificial pancreas from the get-go and wrote about it two years ago. (Click link)
Well it seems the world now agrees.

I found it also interesting to find out at the conference that Medtronic has entered into a relationship with nonprofit TidePool, because Medtronic was supposedly the ones with an artificial pancreas. Will it be that the Medtronic 670g will slowly descend from their highly anticipated expectations. Which leads to another interesting phenomena and that is this idea of mixing and matching pumps, cgms, insulins, pens and any other devices.  More and more DYIers (Do it Yourself-ers) are utilizing devices, blue tooth, the cloud, and one young man has a start-up company utilizing devices such as Alexis, your lap top, your watch, and even the lights in your home to help you monitor glucose control.  Better Living Technologies (betterlivingtech.net) was founded by a father of a child with type one.

Gizmos, bells, whistles, and so much more to try to ease the burden of living with this disease.  At the end of the day, it will be up to each individual to figure out what will work for them.  But remember always, and be warned……..I remember distinctly that when the ‘artificial pancreas’ came out it was touted as the closest thing to a cure that there ever was…..it’s not, and it wasn’t.

Be smart…………………….and ask a million questions.

Me? I still want a biological cure……….Me? I still think we will get there.  It does not surprise me that a father of a child with t1d would invent a way to connect your watch with Alexis to control your lights to warn you of low/high blood sugars.  It does not surprise me that many advancements of late, or in process, have someone with diabetes or a loved one with diabetes involved. Maybe, more and more, these same people should be more involved with the research labs for a cure.

As I packed my bags to leave ADA, my head was in a tailspin on the amount I learned and the amount that is occurring in our diabetes world.  Thank you ADA.  Always exciting to be flying so high and coming in for a landing with trusted folks……right on the runway next to us.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why is Your Child’s Diabetes Keeping You Up at Night?

   I’m not saying that there were not times that we went through the night, I am not saying that we had our share of long nights, what I am saying, or asking actually, why are you not finding some nights to sleep?

As a reminder, my daughter was two when she was diagnosed in 1992.  No cgms, no pumps, no ‘in the cloud’ anything, and most certainly no alarms, warnings, bells, whistles, or even a muted buzz……nothing.   And still we found time, every now again, to get a night’s sleep; more than you would think.

I read more and more and more of people sharing on social media that their child was diagnosed 3 years ago (or whenever) and they have not had a night’s sleep since.  Really?   Why?  Look, surely with two kids living with this disease from ages 2 and 13 respectively I get it, but not figuring out a time to find sleep with all of the incredible management tools in existence today; I’m truly asking for your input on why sleep is so hard to find?  Help others, share.

I remember the doctor also telling us that Kaitlyn would be living with ‘brittle diabetes’, a phrase I hated back when and one I still hate today.  The meaning; almost inexplicably, her blood sugars would drop sudden and drastically with what seemed no explanation.  But we never believed that. We were constantly trying things to see if more practicability could be entered into the equation.  Sometimes it worked, and sometimes it did not.

My heart truly goes out to those who can find no sleep.  I’m not here to judge and I’m certainly not here to say you are doing something wrong.  But I see that written so often so what I am saying, or asking rather, is if you were living in absolute fear that you were not sleeping during the night after your child’s diagnosis…….and if you were able to change that somehow……..share your experience.   It breaks my heart to think people are so sleep deprived when I’m not so sure they need to be.

So please share your experience and perhaps it might wake us up a little on what needs to be done to grab a night’s sleep.   Thanks for sharing.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Make No Mistake Moms and Dads, It’s Your Graduation and/or Awards Day Too!

Congratulations, milestone reached.
I always love this time of year as people post all of the great accomplishments that their child achieved.  Graduating High School, Graduating College, and whatever they call, these days, cap and gowns for kindergarten and/or middle school.  Step up–graduation?…..whatever…..your child is moving on in life.

Wonderful news.

Silently, I have always found myself to be prouder in my mind when I know someone with diabetes has reached one of these milestones.  Any child that has an obstacle in life, and overcomes it to move forward, is worth mentioning.  We see so many stories of kids who have major disabilities receiving degrees and it just warms our heart, doesn’t it?

But our kids who battle T1D, they don’t look any different from their peers, do they? When you meet them or first see them, there is no appearance of the challenges they face.  But make no mistake, they are there.  I remember the story of a parent who during their child’s graduation ceremony, noticed their young son wavering back and forth as he stood at the end of the ceremony.
“Oh, oh!”
And just in the nick of time the parents were waiting for him when he left the ceremony to give what was needed to tend to the glycemic reaction.

The photos don’t show that.

The photos show arms around family members and friends celebrating graduation from high school.  The photos show smiles and good times.  No one would look and say look what the young man achieved, even with the illness dealt with 24/7/365.  No one would say, what a heart warming story that despite; sleepless nights due to diabetes, adjustments made to play sports due to diabetes,  rearranged schedules all through middle school and high school so lunch was at reasonably time adjusting to diabetes, countless trips to the school and school nurse due to diabetes, fighting to make sure they are not left behind in school trips and countess activities due to their diabetes no one would, really, even know.

But you know, don’t you mom and dad?

So when YOUR child who battles T1D;  graduates, ‘steps up’, receives an award, attends sports night, gains entry to an honor society, is named to the homecoming court, named to the prom court, wins a race, aces a test, achieves success in the robotics club or whatever club they participate, are pinned, white coated, named valedictorian an/or just live life to the fullest—-well you just enjoy that huge smile on your face a little bit more than so many others who DO NOT understand the lives we lead.

And should it be forgotten for the moment, or not even known by outsiders, that your child has T1D at these ceremonies………we, as parents WILL ALWAYS KNOW, won’t we?  Because the fact that we will NEVER forget drives us with everything we have to make sure our kids never forget what they really are……..kids like everyone else.

So let me say to all of you parents, congratulations on another wonderful year of your child’s achievements.  Because unlike many others, your child achieved everything they did this year despite, and in spite, of their type 1 diabetes.

I know that smile, and those tears of joy, you will have on your face….and you enjoy EVERY second of it!  Congratulations.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Moms

Mom.
Is there really a more soothing one-syllable word in our language?  Not really sure what the ‘role’ of a mom is, by design, anyway.  Who could ever write ‘the manual’ describing what a mom should be, or what is required?  And yet, so many are so good at it.  I’ve known many ‘moms’ in my life and two will stand out above the rest in my eyes, for as long as I live.

The first, is my own children’s mom. If you are not new to reading this column, you have heard me say before how lucky my kids are to have such a mom as Jill has been, and continues to be.  Life comes to everyone and we have seen much and also been vocal on some things like our kids living with diabetes, and many other things we have kept to ourselves.  Continuing through what life throws at you is not easy and Jill has made it as much an art form as a survival technique.  And all the while, our kids knew nothing more than a wonderful and nurturing environment.

Not easy.  From school involvement, to caring for them, to being their best diabetes educator, to being their confidante, to being strong, to being soft, to hugging, to wiping tears, our kids had it as good as it gets when it comes to mom.

This is my first Mother’s Day without my mom.  And, truthfully, it hurts. Mom demanded the best out of each of us and also taught us to fight for ourselves when needed.  Her three daughters as well as her three sons.  Equality was not a word in our house, it was a way of life of which we knew no other.

My mom was strong, funny, smart, up-do-date, and wise.  She was so wise.  Her advice was not always what we wanted to hear, but it was usually pretty spot-on.  She, too, had seen her days of pain and hurt, and she too stayed strong knowing that life always moves on.

The scales of mom’s life had everything on one side of the scale in living to be over 90, having six kids, 23 grand children, 18 great-grandchildren, traveling the world, had a successful career,  she died very quickly and not a long illness, and yet, the scales are outweighed and tipped by the one fact; she is gone.

When mom left, I was comforted by the fact that nothing was left unsaid between us.  We always ended our calls, which were many, the same way; “I love you son.”  “I love you too Moo-Moo”.  I was lucky to have such a mom as the one I had.

I miss her.

Make sure you do something special for your mom this Mother’s Day (and every day for that matter).  I can tell you from experience, the hole left behind is great heading into mother’s day without someone you loved for 60 years, and who loved you back unconditionally, just because she’s your mom.

Happy Mother’s Day Moo-moo.

I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Fighting Among Ourselves……How’s that Working Out?

Diabetes Community.
This all-encompassing phrase seems to be under siege of late.  Seems there is a movement that it is more important to be right, be the first, than it is to be a community in some people’s minds.

Let’s be clear.  As I have stated in writings, in lectures, and in interviews; no one has made more mistakes at this thing called diabetes than I.  But I try very hard to listen. to learn, not to make the same mistakes twice, and to apologize when needed.

Let’s be clearer: Whatever you feel is the correct way for you to treat your (and/or your child’s) diabetes, is up to you.  You can think it is 1000% sound for how you act day-to-day but here is the thing, it is not how I NEED to act.  You can come at me with 1000% all the stats and medically sound data you want…….but my question is, why do you feel the need to do that?

If you want to enlighten me, thank you, I will listen,  I will do my homework.  But we will make the decisions on what we want to do, and will do.  At the end of the day, it is our decision.  Right or wrong, it’s our decision.

What is with this ridicule and arguments how wrong people are because they disagree with a point of view?   Why?

I’m not a fan of many things that I see in our diabetes community.  But I also cannot learn if I think I know everything, I do not……..CLEARLY I do not.  I also see a huge amount of power out there.  And much has been going on for a long, long time.  People who have come and gone and were the first voices in many legislative actions and movements spoke out because it needed to be done…..and for no other reason.
This community is unstoppable but do not let a few tear down what has been going on for much longer than many have been around; the late GREAT Kitty Castellini comes to mind, as one of many.

Congratulations, the things you are fighting about as far as how this disease needs to be treated, the way you feel, is correct.  Congratulations, you were/are the first ones and best and shining a light on what needs to be a battle in congress and the public consciousness.
Congratulations.

Can we now get back to work?

The things we need to do, fight for, become, be, teach, learn, discuss, and move to the forefront of those who do not know is large and there is much work to be done.  Spending one second breaking this community down is useless and a waste of time and the second you find yourself ‘going after someone’ stop and ask yourself if your energy would be spent educating others who have no idea what our lives were like, as a better use of your time.  If what you believe and state is credible, it will be taken to the next level.  If it is not, it will ‘die on the vine’.

You know the saying, a house divided among itself cannot stand; it’s true.  Let’s get back to work, together.  Going after each other, wow, why?
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Time I was Part of NY’s Famous Easter Bonnet Competition

So every year about this time, my heart goes deeply back to my roots of the NY Theatre scene.  For it was the NY Theatre scene that, in essence, readied me for a career I am now in, fund-raising.  True, I wear a few hats, but at the end of the day fund-raising for the Diabetes Research Institute, to help find a cure for my two kids and the millions like them fighting diabetes is my end game.  My Goal.  My Passion.

But back when, living in a care-free world, my life was the Theatre.  My family was very young and there was no diabetes.  Nancy Cassaro, one of the creators and stars of the New York smash hit, Tony ‘n Tina’s Wedding, came to me and said we have been invited to partake in the Broadway Cares Equity Fights Aids Easter Bonnet Production.  Back then, the event was in its infancy.  But it was a good, no….a great, idea.

Broadway shows competing with skits, an Easter Bonnet, and fund-raising to help those battling aids.  I knew quite a few people who lost this battle and those who live with it, still.  So being involved way back when was a passion but with a huge amount of work and great fun.  And there have always been pretty big names involved in this event over the years.  Pictured are Babe Neuwirth, Nathan Lane, and Catherine Zeta-Jones from the 2010 event.

For six weeks, shows in New York and on tour raise money with everything from signed posters, meet-and-greets with the cast (including some big names), signed memorabilia, live on-stage auctions, and of course the ever-famous bucket collections at the end of each show.  In the short time since its inception, The Easter Bonnet Competition has raised over 87 million dollars with their efforts.

So way back when, again, Nancy asked me to come up with fund-raising ideas.  And working with the cast, we came up with some really fun ideas.  In the genre of our show (a wedding, but not really) we created a telethon, but not a real one.  Right after our show was over on Sunday, we changed our space into the telethon TV studio.  So much detail right down to a phone bank with phones ringing on a recorded loop so all through the night phones were heard ringing.

We created hours and hours of entertainment, including a TV camera for ‘broadcast’; and all-night long people paid to come in and watch whatever it was we were doing—-even in the wee hours.  It was crazy, it was original, it was exhausting and it was one of the most rewarding nights of my life.  This was our big fund-raiser and we also did bucket collections after each night of our actual show.  When it was time for the big Easter Bonnet competition—ours of course was a huge wedding cake-bonnet, being onstage with all famous Broadway folk, well it was cloud nine.

So it has been 30 years since we did that, and I was a mere 31 years of age.  The Broadway community continues their efforts and now of course, they raise millions each year and this year (today in fact) alone was over 6.5 million dollars compared to the couple hundred thousand raised, when we did it.  This year, my dear friend Billy was director, a writer, and a designer of one of the bonnets.

So many times we hear people trying to come up with new ideas to raise money for causes.  It’s just so impossible, right.  But yet, years ago, our little show was up against all the Broadway mega shows like Les Miz, Cats, Phantom and many more.  But we had a good idea and good people coming together for a cause we believed in and when the money was counted that year, Tony ‘n Tina’s Wedding was one of top fundraising shows of the Easter Bonnet Competition.

A few days after the event, we were back at the theatre, or ‘ the space’ as we called it,  and Nancy came in and she gave me a package.  She said, “you deserve this”.

Puzzled, I opened the package and it was the award they gave her for our fundraising efforts.  I was humbled but so proud and the feeling was just incredible.  I will never forget that feeling.

Years later, I would enter the fundraising world.  Kaitlyn would be diagnosed with t1d and my energy would go toward finding a cure.  I dream about that day.  I do believe with all my heart that we will get there.  And that award would be a million times more than what I felt when I first received that Easter Bonnet Competition Award…….but my next award will be a cure.  No award, no frame, no trophy……..just a cure.
And the curtain will close on diabetes.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Congress A+…….But PBMs and Insulin Companies, it’s the SAME Routine

Soooooooooo I listened to the The Oversight and Investigations Subcommittee recording of the meeting held today, Wednesday, April 10, at 10:30 am on The Hill. The hearing was entitled, “Priced Out of a Lifesaving Drug: Getting Answers on the Rising Cost of Insulin.” Once again, you can click the link to see the hearings yourself (remember that there was a vote which delayed the start and you must slide the video cursor to about 1:53:21 for the actual start of the hearings.–Know that it’s a long hearing)

This was the second part of the hearing from last week, you can read my article from last week by clicking this link.

I finished watching the hearings and to be honest, I placed my hands on my face and screamed until tears flowed down my cheeks.  Literally.  My stomach hurt.  My head hurt. The witnesses, who were sworn in under oath and all waived the rights to legal counsel, were from Insulin companies: Lilly, Sanofi, and Novo and PBM (Plans Benefit Manager)s represented were CVS Health, Express Scripts, and OptumRx.  These are the giants among the giants in all insulin supply and pricing.  The names of the individuals matter little in the scheme of things but know they were all from the hierarchy of these companies and spoke on their behalf.  I will be referring to the company name just to try to make this a tad easier to follow.

Chairwoman Congresswoman Diane DeGette (a mom to a daughter with T1D) relayed a heartfelt opening reminding the witnesses that the Committee heard heart-wrenching stories the week before from witnesses whose theme was universal; The present system in pricing of insulin is opaque, non-transparent, and no longer represent the patients best interests. She further challenged that the goal was not to unjustly blame but rather, what can be done to fix the current situation.

I think we might get further if we were to just blame.

It was clear that the line in the sand had the insulin companies on one side and the PBMs on the other.  I listened as each one stated their case so matter-of-factly, as if this is the way it must be.  There is a ‘formulary’ (the list of medicines) that is presently in place by the PBMs. Rebates, discounts are all based on these ‘formularies’. (I wish these people could have heard themselves talk).   Depending on what discounts and rebates are given in these ‘formularies’ dictate the price you pay for your insulin.  A generic insulin cannot be introduced because it would throw off the ‘formulary’ that is now in place.  In a nutshell (according to the manufacturers), manufacturers cannot add lower priced insulin to the market because the PBMs will not allow those insulin prices to be included in the existing ‘formularies’.  The PBMs stated that it’s the system in place that prevents them from doing anything.

Congressman Walden from Oregon asked the Insulin Companies if generic insulin was being prevented being part of the ‘formularies’ as a decision made by the PBMs?  The answer was, ‘Yes’, from the insulin companies.

Dizzy yet……yeah, me too.  It was like watching the Who’s on First routine.  (click the link to see it, for what it was supposed to be back then, it was very, very funny) The routine made famous by Abbot and Costello that no matter how much is said, you end up right back in the same place……………………..not fully understanding anything.

That describes what I saw.

And yet, all six representatives touted what incredible discounts the patients were given and how much they had done for those who were in need.  This created a stir and responses like the one from Congresswoman Schakovsky from Illinois who chastised all of them because giving the ‘breaks’ they all stated allowed each companies tax incentives for doing it.  Loudly she stated, “Tell me I’m wrong!!!”  No one spoke up.

When Congressman Ruiz from California asked, “What will each of you be willing to give up to make insulin more affordable?”, and when the answers started to sound like prepared statements on what is done for those in need, the Congressman shut it down, “Your solutions have not worked.  Theoretic reasoning is not helping the patients.”

The representative from Sanofi was being challenged again, and again, and again, on savings by Congressman Kennedy when the rep started, “We announced today…….”  “TODAY?????” Mr. Kennedy cut her off—-“Today????……being before congress…….”
Congressman Kennedy (his passion reminded me of his Great Uncle, Ted Kennedy, who was known as lion on healthcare issues) crossed his arms and stated that both sides have to stop blaming each other.  “The status quo is not going to continue……it can’t.”

During the hearings, probably the most troubling statement came from the representative from Novo Nordisc who stated that the ‘formularies’ in place were the way for each insulin company to reach the masses, we cannot put that in jeopardy.

I guess from a business standpoint, sure, but what about the patient?…….they live in jeopardy constantly.

Congressman Tonka from New York asked a series of questions to be answered yes or no.
“Are you all aware of the stories of those rationing their insulin?”
All six—-“Yes”.
“Have any of you had to ration insulin?”
All six—-“No.”
“Have you ever had to choose between buying food for your family or buying life saving medication?”
All six—-“No, and no one should.”

The reasoning given by all six on what could and could not be done to alleviate this problem, or the lack of an answer therein, was nauseating time and time again.  Leaning on the way ‘things have been done’ as the reason for not doing anything to change the problem today was frightening at best.

And after almost three hours, the hearing came to an end.  I’ll wait until next week and I will reach out to Congresswoman Degette’s office and ask her the exact question that anyone who watched today’s hearings would find themselves asking…………………What in heaven’s name is the next step?

Our Congressional Leaders have been incredible thus far.  Let’s hope it’s the start of the change. As one person noted, this mess has indeed created the one thing Washington has been seeking for over two years……. a nonpartisan discussion.  That’s just fine, but did it have to be at the cost of members from our diabetes community and their very lives?

More will follow…………………bet on it!
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