Tag: insulin

The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

Posted on | by tomkarlya | 2 Comments on The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

There has been much discussion of late regarding insulin which is available at places like Walmart for a very reasonable expense.  Some are saying/reporting that people died by going on that particular insulin which they were forced to do because of the cost of the insulin usually used has skyrocketed out of control.

I’m not here to argue this point; sides are drawn and the battle to be right is occurring in many places all around us in the diabetes community.  What I would like to do is make a few points for all of us to think about, while we wait.

What we are waiting for is my first point——there is absolutely no reason on earth why anyone should stand idle and not keep up the pressure of advocacy at the boneheads responsible for these out of control insulin prices.  That fight needs to continue and needs to continue constantly.  There is absolutely NO REASON for any individual with this disease to not be given the insulin, THE BEST INSULIN, they need to survive.  That point needs to be clear.

Whether some like it or not, believe it or not, many people have survived using what is available at a lower cost. Before many of the diabetes tools in our diabetes tool box now available, there were limited resources.  When the insulin ‘hit’, sometimes it was like a crashing airplane.  Crashing was as much in our discussions as high and low blood sugar.  It was part of what we had to deal with, and what we had to do and with proper medical professional help, we charted the best course available.  Guess what? Some people died back then using this method.

Guess what?  Some people also have died because of something to do with their insulin pump.  Whether it malfunctioned or was not used correctly, is not always known.  People also die when a car malfunctions or is used incorrectly. We cannot stop driving anymore than we (or our kids) can stop taking insulin.  In the latter case, stop taking insulin is a death sentence.

Any fool can go out there and say that this is much ado about nothing because an alternative is available at Walmart.  It’s a stupid statement at best. TOTALLY AGREED. But……..BUT, until such time that this can get fixed, people with diabetes need to take insulin. And to change ANY course of treatment must have, and needs to be done, under medical supervision only.  There is no WAG (wild-ass-guess) here because that can cost you your life.  ANY CHANGE TO YOUR TREATMENT SHOULD BE DONE UNDER MEDICAL SUPERVISION ONLY.  PERIOD.

Remember the discussion how treating this disease is very personal and is different with each person? That there is no ‘one size fits all’.  Even with medical inclusion, we still have to pay particular attention to everything diabetes.  When you change one thing, it changes many things in one’s life.  It’s the truest form of real-life-domino-impact that one will ever see. So if some people are making the lower insulin work for them, are they wrong? If some people want the fire to get turned up in Washington so people can use the insulin they want; are they wrong?  What happened to one person’s treatment does not necessarily have to be the same as another’s?

I’m seeing a ton of energy from people trying to convince the world that it’s better to have nothing, than use the less expensive insulin available.  That’s just not true or my daughter, and many others, would be dead already because we were using that-type- ‘cocktail’ for years.

Is it a solution? No. It’s a stop-gap measure until the folks from Washington can get their heads out of their……let’s just say, the ground. Want to argue that point, argue it with Washington folks because arguing with those who do not have the power to change anything, is wasted energy.  No one should want or have the need to be right about this, what we all need is to see this resolved.  The pressure needs to stay with those who can, and who must; rectify it once and for all.
I am a diabetes dad.
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The Time I was Part of NY’s Famous Easter Bonnet Competition

Posted on | by tomkarlya | Leave a Comment on 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

Posted on | by tomkarlya | 3 Comments on 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

Posted on | by tomkarlya | 3 Comments on 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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Transparency, No Matter What is Announced, That’s All Folks

Posted on | by tomkarlya | 1 Comment on 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

Posted on | by tomkarlya | 2 Comments on 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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