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

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
Please visit my Diabetes Dad FB Page and hit ‘like’.

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?

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