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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Gosh, They Know so Much More than Me….uhm….Maybe Not

My heavens I wish I knew what they knew.  Have you ever found yourself saying that to yourself when you’ve seen the conversations occurring on-line?  You know, that intimidation when someone says something and you know that you believe the direct opposite on what is being said but heaven forbid you should say anything because of the fear of having to be reprimanded.  By who?  Someone you’ve never met but are friend s only on FB?  How silly do they make you feel?

Well forget it.

I’ve always gone about caring for our child’s diabetes with a thought process that I know absolutely nothing about diabetes.  Now at first glance that may make one think that I would be swayed all around like a garbage bag in an alley on a windy day.  But actually the complete opposite occurred.   Because if I did not know something, and I heard something; well I would go and find out whether what I heard was correct……or not.  I took people’s opinions at only face value until I went and found out……for myself.

You do not need to be right on a FB page……..you only need to be right in doing for your child and your child’s management with this disease.  What a waste of energy to read as parents ‘go at it’ on a FB thread.  To what end?  If I read someone’s thoughts that interest me, I find out on my own.  I research the answers.

Quite a few times in my life, my original thought on a diabetes matter was changed as I learned more.  And some times my thoughts changed drastically.  Being right in an online discussion…..means……what?  But finding out the truth, well if your child wins, what else matters and that’s the payoff.?

So the next time two, three, four, or more parents are in a heated discussion over how to do something…..listen and use the internet what it is really good for……research.  My friend Jeff has a great saying; ‘show me the data’.  If you find the data to be true, it’s a real good start.  Who cares about my opinion?  When it comes to my child’s diabetes management, I don’t even care about my opinion……..I care about what is truth and what works.  The answers are out there, find them,  Don’t be intimidated by those who are loud and pushy to just ‘be right’………care for your child the way you know best……your way.

And if no one knows it but your child; that’s ok too.

I’m a DiabetesDad
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Keep on Swimming….I’m Asking :)

We ‘gotta keep on swimming’.  Ahhhh those famous words from Dory in the finding Nemo movie has so much for us to learn, don’t they?  Today I’m here to ask a favor so feel free to bail now if you are so inclined.  🙂

I believe there are many GREAT diabetes organizations out there and I support as many as I can.   It’s no secret that mine is the Diabetes Research Institute (DRI) and why my career path has me here for over 15 years.  Our kids must stay healthy today.  That, there is no question.  But the cure is the goal.

It is has also been the goal of the DRI since the first day they opened the doors……all the way to today.   Hard to keep that focus, and no easy task, but the DRI remains committed, since day one.   I still have hope, strong hope, that one day we will get to the cure we search for tirelessly.  When?  Well not sure and it’s a tall ask but that does not mean we should abandon the hope.  Well I choose not to give up that up and I believe the DRI will stay at the forefront of that search.

It’s great to believe in an entity that will just NOT GIVE UP either until we get there.  My kids deserve that hope.  We are not naive, we’ve been at this for some time.  But we also know the incredible work that continues that will lead to 5 clinical trials simultaneously in the upcoming months.  With that in mind, our walk is coming in March. It is my goal to participate, cane and all, as much as I can.   If this column has inspired you in any way, helped you in any way, or ever made you smile please consider donating a little something to our team, Two Too Many.

Having two kids with T1D is too much.  I want it cured and until then, I’ll keep on swimming toward a cure.  Please consider a donation of any amount.  Click the link above or here.

Thank you for caring.

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

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

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

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

In the 210 page complaint it states:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You did that.   Yes, you!

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

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

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

I’m a DiabetesDad
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Machines Break…..Be Careful of the Image Your Child Sees

As many people know, I am fairly active with hurricane relief efforts.  I was once patched in to someone overseas via a satellite telephone.  The young man was in dire need because his insulin pump broke while he was moving out of his home to avoid the rushing waters.  He worked for a company here in the USA and they reached out while they were on the phone with him.

I asked them to translate and see if the man had insulin and syringes.  When they told me indeed he had them, I asked why doesn’t he just give himself a shot.  They translated and stated that he would do just that.  I can not emphasize how true that story is and it scared me to no end while it was happening.  It’s my hope that it was just so much happening so fast that the thought just did not enter his mind but he did not know that an injection could work. But if it was the fact that he was not ready to use something else……that’s a problem…..and it could have been the cause of serious consequences.

I also read many times on-line how lost people become because “a disaster” happens and their management tools become unusable.   Many have stated they would not even try certain diabetes management products because they are so afraid of what could happen.   Let’s look at both sides of this discussion.

In 2017, the most recent data from the National Highway Traffic Safety Administration (NHTSA), over 37,000 people were killed in car accidents.  Does that mean we would not drive in a car again?  Maybe, to some.  But for the most part we get in and out of our car countless times a year not thinking once that here would be an accident or a mechanical failure in the car, do we?

Insulin pumps and CGMs are machinery.  But as so many say regarding their diabetes devices, “when they work, nothing is better”.  Just as in how lost we would be without cars, it is certainly better when they work.  Not unlike diabetes management tools. But also know this; I would be hard-pressed to name any machinery that will not, at some time or another, fail.  That statement is not to scare you—-it  is to make sure you’re ready.

Ask yourself, what is my back up plan?  What will happen when the insulin pump malfunctions?  Has your child even used an insulin pen before?  Have they even seen one?  Do not wait until it is time to use something for the first time that your child is being introduced for the first time.  I’m of the belief that back-up devices should be introduced, and even used, prior to that pump or cgm breaking….know this….they will break.

And the most important thing to remember when a device breaks is that your child will closely mirror you.  If you are not running all around in a crazy panic, chances are your child will not either.  How many times do the local fire departments share that you should be prepared when a fire hits your home?

When something went wrong with our kids’ diabetes devices (and I so strongly credit Jill, my wife, for this) the plan was rehearsed and ready.  Back up plans even had back up plans.  The kids were not panicked or freaked out because something different had to be utilized.  Three different roads can get you home, your only lost if you have not tried them

Take the time to work through scenarios of what to do before they happen with all those who care for your child with diabetes.  That way when they things are ‘flipped apple-carted” your response and actions will be second nature.  Things break, they do, keep the catastrophe level by being ready.  Keep your children calm by staying calm.  Be calm by being prepared.

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

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

…….okay……got your attention??????

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

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

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

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

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

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

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

I’m a DiabetesDad
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