Lisa Awards 2019, Powerhouses in Our Diabetes World and One Special Son

Ten years are a long time.  I just cannot believe that ten years have gone by that our sweet Lisa left this world.  But she went out with a voice shouting from the mountaintops and it is in the memory of that voice that I keep the promise I gave to my Little Brother (honorary), Mark, that in honor of his wife I would bestow The Lisa Award each year to those who understand The Power of One.

It is given to people who, in their own way, change the world just like Lisa did.  This is a VERY BIG deal to me because these award are not given lightly.  They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day.  My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer.  Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

This year’s recipients are:
 
Aaron Kowalski, Ph.D. — CEO, JDRF — A 15-year veteran of JDRF and the first person living with T1D to lead the research organization, Dr. Kowalski has a strong record of spearheading impactful strategic initiatives and forging new partnerships from his previous role as JDRF’s first Chief Mission Officer.  But Dr. Kowalski is not a recipient of The Lisa Award just for his new role as JDRF CEO, it is because of his unyielding desire believing that good, is not good enough.  No matter where you look; running, riding, testifying, lecturing, one-on-one conversations and/or leading, he is a true living example of how important this Power of One truly is, he lives it.  Make no mistake, he will credit those he works with before taking credit himself, which only makes him even more deserving of this award.  When it comes to true diabetes advocacy and understanding what this world needs to become for a better world for himself, his younger brother, and the rest of the world living with this disease,
Dr. Kowalski is the absolute “Real Deal”.   I have had the pleasure and privilege to be side-by-side presenting with Dr. Kowalski and working with him in other dealings, and his brilliance is only outdone by his compassion to making a huge and true difference in this world of diabetes.  Great things lay ahead.  Power of one; indeed.


Kim May — President/Founder Nobox Creative — or perhaps she should better be known as supermom.  In addition to being the owner of a hugely successful Ad Agency in Amarillo Texas, Kim has never forgotten the day that she laid her almost lifeless son, at the age of four and with a blood sugar of over 1000, on a hospital gurney stating for the staff to get to work on saving her son from a newly diagnosis of type 1 diabetes.  Already a powerhouse in the community, she co-created GetDiabetesRight.org, a site dedicated to allowing people to download creative posters to be used for diabetes awareness within their communities on the warning signs of diabetes and what to do when these signs become evident.  Hundreds of thousands of posters have already been downloaded and distributed  Not nearly done with her efforts, Her Power of One continues as one of the founding and continuing Board Members of the Diabetes Foundation of Higher Plains in Texas which runs a camp each summer and also funds diabetes research.  She and her husband, Jentry, are hugely dedicated to their family and her two sons’ MANY activities, as well as the community they live.  Kim has left her mark on everything from museums, to churches, to Amarillo and Connect Magazine, to so many things diabetes.  Her Power of One is unyielding although she too, would be the first to say, she has a lot of help.

Matthew Carlinsky — Lisa and Mark’s Son.  As soon as I knew that Matthew would be one of the Lisa Award recipients this year, I wondered how far I would get before i completely lost it and the tears would flow.  For the record, the tears started before I finished typing his name.  And I’m sure they will continue, so I will just keep going.
The main reason for the tears is that Mark’s upbringing of Matthew and the fine young man Matthew is turning out to be is EXACTLY as Lisa would have wanted it.  Mark is not easy, he has always demanded striving for the best, mostly in himself.  To be able to do that in also a loving way to a son, and as a single parent is no easy task,  But right back at him, Matthew is no lightweight either. They surely bring out the best in each other. At the age of four, Matthew was dealt a blow that no child should ever have been given.  He lost his mom.  There is no doubt that Mark has kept Lisa’s memory deeply arrive in Matthew and it is what Matthew has done with it that, he too, is being awarded a Lisa Award.  It’s important that one remembers how important this award means to me, and remember what I have stated in the past, I do not give it lightly.  Matthew has not only accepted his Mom’s Power of One, he has come to own it.  As it was important for him to be helped by The Family Lives on Foundation, Matthew knew that in his Mother’s memory and teachings, it was time to give back, even at his young age, and give back he does.  Through the organizations “Traditions Program” kids get to relive an activity or tradition that was special to their parent.  For Matthew and Lisa it was Holiday and Birthday baking.  Cookies and cupcakes.  Matthew states that, “The Traditions program definitely helped me cope with the loss.”  But more than that and realizing that his Power of One could make a difference, Matthew turned all of this into a month long awareness and fund raising effort.  Being a member of his Oyster Bay High School’s National Junior Honor Society (which I’m sure mom smiles down upon as well), Matthew enlisted the help of his fellow students to raise the highest amount of money the high school chapter has raised in 17 years.  (Side note under the full circle ‘small world’ title, My wife, Jill, was a graduate of the same high school).  In the picture above, gone is the little boy sitting in his mom’s lap replaced by a strong young man and the photo shows Matthew addressing the crowd at the Foundation’s Annual Ball in Pennsylvania thanking them for recognizing his efforts.  He pledged to continue assisting Long Island Families involved with the Traditions Program.  Even as a ninth grader, Matthew is an absolute living legacy to his mom who believed that One Person can make a difference no matter where they are, or where they go, or what they do.

Congratulations to this year’s recipients.

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

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’.