NEWSBREAK: CBS This Morning Reports on Insulin Costs, The Players, and the Lawsuit

CBS This MorningAs I wrote/reported recently on the story in Diabetes Daily, there is a lawsuit pending against the insulin companies regarding collusion on insulin pricing of late; and I also have stressed on how all parties need to react and must come together (read it here).  Today, on CBS This Morning, they report the story in more detail.

What I would like to stress about this story, is as I have also stated countless times, it is touched upon here in this report but do not just gloss over it.  At the end of the report, the reporters discuss how much finger-pointing there is going around—-THIS IS SO CRUCIAL because the finger-pointing will continue as long as ALL OF THE PLAYERS ARE NOT SITTING AT THE SAME TABLE AT THE SAME TIME to fix this problem.

It also will not matter what national health plan is in place, and do not be led off the path of what is important:  ALL PLAYERS MUST COME TOGETHER OR WE WILL BE IN A PERPETUAL, AND UNENDING, CIRCLE FOR YEARS TO COME.

THIS IS WHAT WE MUST ASK OF ALL THE PLAYERS……TO COME TOGETHER.

Here is the story on CBS This Morning.

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NEWSBREAK: Law Suit Against Top 3 Insulin Manufacturers

scales-justice-statueI won’t even try to re-report this story—-go to my colleagues’ story at Diabetes Daily and read all about it:
https://www.diabetesdaily.com/blog/people-with-diabetes-are-suing-the-top-3-insulin-makers-349851/

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OPINION: If All Do Not Sit at the Table, at the Same Time, NOTHING will Get Done.

TableI received my mortgage bill recently from my bank.  There was an error in my amount of taxes.   So I called my municipal tax assessor’s office to confirm the error and they agreed.  I called my bank and informed them, they started a report (they always ‘start’ a report) and said they would look into it.  I called back in a few days and they stated they contacted the tax assessor’s office and that they were correct from the beginning and that I would be getting a letter…..from the report.

Uhhhhhhhmmmmm……I don’t think so.

After going around in a circle a few times, I got both the bank and the municipality on the call at the same time to stop the perpetual merry-go-round and we worked it through.  I will be getting the revised bill shortly.  Now those few sentences are about 6 hours worth of wasted time and energy, but when I got everyone together, at the table at the same time, as-it-were…..results.  Unless all the stakeholders are together at the same time it’s the gerbil in the never-ending spinning wheel.

Now hear me and hear me closely.  All of the government regulations, petitions, and meetings will not do anything substantial when it comes to the cost of insulin. Little will be done in tangible results.  At some point, the natural progression of the market and competition will do something to lower the costs and people will be jumping through hoops to take the credit….if that, indeed, ever happens.

Oh sure MANY, MANY really good things will happen that will REALLY, REALLY look good…..but it’s all for show to say to the world……”look what we did.”

But watch carefully….it’s all for naught.

But until such time as the stakeholders, the retailers, the producers, the manufacturers, all sit around the table at the same time to try to resolve this mess….and throw in a few elected officials to give a government perspective on the whole picture as well………..it won’t be resolved…….ever.  Please prove me wrong.  But if we want to see something significant happen with this insulin dilemma, get everyone involved at the same time at the same table and lock the door until a resolution comes into play….is really our only chance.

So either get everyone, EVERYONE, all together or, as I said, prove me wrong……..PLEASE…….prove me wrong.
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NEWSBREAK: Lilly Fires First Shot in Lowering Insulin Cost……Now We Need a War!

first-stepToday, Lilly Diabetes released an announcement that they are reducing insulin up to 40% for some users in the retail market.  You can read the announcement here:
https://investor.lilly.com/releasedetail.cfm?ReleaseID=1003887

Now this very well may not be for everyone and clearly will not work in all cases, maybe not even in a whole bunch of cases.  But it will help in enough cases to impact a good deal of lives, and that’s good.   Lilly deserves all the credit in the world for actually trying to do something, and being the first to fire a tangible shot.  Now naysayers might criticize it; but there is something in this release that is revealing when Lilly Diabetes President, Enrique Conterno, states that this is a ‘first step’, and I believe him.  I participated in the discussions mentioned and I can tell you this, Lilly is serious in their attempt.

Why?  Because as I have stated before, I’m not a huge fan of petitions.  From my days in government I know they accomplish little but good PR for the ones issuing them.  In government it’s pretty well accepted that the amount of signatures is directly related to the PR machine behind it and not really about the substance, personal letters are a different story.  What Lilly Diabetes is doing is an actual action step.  IT WILL NOT be for everyone and may also be for a smaller percentage, but it’s a step and when it comes to major companies, I will take any step than no step at all.

The diabetes companies are not alone in the price issues and the costs being so high to patients; and it’s my sincere hope that ALL the players involved can solve the issues themselves because I feel, as is more of the case than not; to have the government involved in trying to fix this will be a disaster—–it usually is.

So I applaud Lilly Diabetes and I know they are not done speaking with people trying to figure all of this out.  It’s also my sincere hope that ALL OF THE PLAYERS (including retailers and payors/insurance companies) sit at the same table at some point to actually do something constructive to help those who cannot afford these crucial diabetes needs.  Not merely to issue a press release in the first week after a meeting (who cares) but to construct a bridge of new ideas and out-of-the-box thinking with REAL solutions, because diabetes patients deserve at least that.

Agreed, what Lilly Diabetes has begun will not solve all the problems, and maybe only help a small percentage;  but actually helping a small percentage quietly and methodically for some sort of actual solutions are so much better than huge “look at what we are doing” campaigns that will accomplish little.

Patients need action steps and Lilly Diabetes, I hope, has just started the snowball to begin rolling down the hill.  Time will surely tell.  Bravo Lilly Diabetes.
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When Did Insulin Enter the Oil Market? Rising Costs Seems that Way.

insulin oil wellHave you ever seen a story in the news about the rising cost of oil prices?  Usually a photo of men hovering together as if to show that they control the price per barrel and the rest of the world can only watch and wait…..and bear the brunt of whatever decision is made.  You’ve seen it, right?

The cry came forward from administration to administration how we had to be less reliant of foreign control of oil prices.  It impacts us all.  It’s a scary thought when we are confronted with the fact that a few are making a decision impacting many.   Because of this impact, it garners the attention of the news media.

When it comes to diabetes, there has been stories lately that seem to be missed by many and is becoming an increasingly worry-some fact.  The cost of insulin has been on the rise.  It’s been on the rise for some time.  In a Los Angeles Times article by David Lazarus almost a year ago he quotes Dr. Mayer Davidson, “…..Davidson cited a recent paper in the Journal of the American Medical Assn. showing that prices of both generic and patented insulins have jumped more than 500% since 2001. The cost of a vial of one of the most commonly used fast-acting insulins, Humalog, soared to $234 this year from $35 in 2001, the journal said….” (9/4 2015 LA Times)

What? And who do you think pays this?  Answer, us.

It’s not as if there is a shortage.  The American Diabetes Association states on their webpage; “ All insulin available in the United States is manufactured in a laboratory, but animal insulin can still be imported for personal use.” (Cite: Click Insulin Basics).

Now to me, I take it that there should be a fairly limitless supply as long as the manufacturing equipment has the materials needed.  I’m pretty sure they do. So if there is enough to make what is needed, why the rise in cost?

This rise in insulin cost, to me, is just because a few companies control the substance that keeps people alive.  They can dictate the prices because it’s not as if there are a million brands that would keep the consumer cost to a minimum, so much for consumer choice.  It’s because you have a choice of only a few.  Demand dictates cost.  With over 29 million people with diabetes and millions of those on insulin with only a few choices…….well that equals what we are now facing.  Glut. Greed. Money. Costs escalating.

But when people are prolonging their insulin doses by cutting back on what they feel ‘they absolutely need to have’ due to high costs, as oppose to what the doctor, recommends, and what the patient knows they need; ladies and gentlemen—-this is a real problem.  This could cost lives.

Keep your eyes open on this topic.  When you see advocates asking for actions, act. Join dPac today. If you have diabetes or a loved one with diabetes, this is site you might want to follow as they do an incredible job on ‘acting’ in all fields of diabetes. DPAC was co-founded and is run by patients with diabetes: Bennet Dunlap and Christel Marchand Aprigliano. Joined by other diabetes patient advocates the Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 29 million Americans with diabetes.

Insulin is not oil.  It would be a shame if these costs are controlled in a board room.  I fully understand free enterprise….but when a ‘controlled market’ of people are paying too high a cost to JUST stay alive…..someone needs to step in.  People will die.
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Tried CGM? Pump?…and Went Off…..YOU FAILED!!!!!……..Hmmmmm Really?

failureI have a friend; let’s call her K.  K has a son, let’s call him Z.  I have known K for a very long time and she was an incredible actress.  I thought nothing could ever surpass her talent, but it did, it was K’s incredible and wonderful heart.  She is an incredible mom and her family has become her life.  It’s not surprising in the least.

Recently K share a story about her son who was on a football team.  Z decided that playing football was not for him.  Despite the uniform, the money laid out, and the time invested, once Z stated and meant that he wanted out; K allowed him to get out.  She applauded her son for letting her know how he felt and she backed his decision.  Z no longer plays football.

Now to some this may seem a very easy choice.  But I also know parents who kept their child involved in things that the child absolutely hated.  “I need to teach them that they cannot quit something once they commit.”  Is their thought process.  This is a very fine line to walk and the discussion relates directly to our diabetes world.

Laying out money for an insulin pump and/or a CGM is a big investment in both time and money.  At what point are we doing what is best for our child and what point are we absolutely torturing our child?  Now it’s understood that our children may absolutely HATE checking blood sugar and taking insulin and of course we cannot ever stop that process no matter what, but………when it comes to the devices that our children wear, when is the decision a must; and when is it a cooperative decision with our children?

A tough line to draw in the sand….yes?

Okay.  So the decision has been made.  You are approved and you receive the device, your child wears it.  Tries it.  And after a given time………THEY ABSOLUTELY HATE IT.  Hate IT!!!!!!

What do you do?

IN actuality, I’m not asking THAT question.  That’s for you to conclude in your house.  My point is for those who come to the decision to remove the device and try managing without it.  It’s crucial that should/when that decision be made that neither you and especially your child, are ever made to feel as though you failed, and even more so, that your child failed.  I’m a HUGE FAN of both the insulin pump and the CGM.  But it’s easy to be a fan when I do not have to wear either/both 24/7.

My dear, late, friend Dr. Richard Rubin’s voice is very loud and clear in my head in these instances.  “It’s about choices.”  Discuss the choices ahead for you and your child.  If they are absolutely against it, forcing them could have an adverse impact for a long time.  Be careful.  I’m not going to even attempt giving you a formula for what works and what does not in these instances because it’s just so different with each person/family.  I am going to say that people lived very long lives without, and before, the addition of these incredible tools.

Not using one, or going on one and going off one, is not the sign of failing and do not let anyone tell you otherwise.  How you handle this situation will set the framework for the possibility of using a device in the future.  People, our kids too, can change their mind.  Allowing them do so, for or against, is a very important part of their management.  The only non-negotiable (outside of checking and taking insulin of course–and even at that, my friend Joe S. and 50 years with diabetes states that a ‘vacation’ to some days is worthy to do very carefully—-ask Joe about how to do that!!!!) was the wearing of their ‘alert’ bracelet or necklace.

Everything else became a choice.

For the most part we came to a mutual decision and even when Kaitlyn was pretty young, it went that way as well.  Easy?  Nope.  So the take-away here is defining what a failure IS NOT.  It’s not about deciding against something.  Just as K’s son, Z, made the choice that football was not for him.  Not a life and death decision surely, but how K let this play out was very important and a lesson to be learned.  It was handled perfectly.

Failure is staying in something that is just wrong.  How you define that is up to you and/or your child.  Think about it.

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Insulin Pump? CGM? One Choice……What Do You Choose? A Needed Dialogue.

pumpsSo, say you are speaking to a newly diagnosed parent.  They are slowly coming around to understanding this new thing called diabetes and the doctor starts to inform them that it’s time to start thinking of having their child consider an insulin pump.  The conversation and the plans begin.

But is that an error?

Well not really an error, but let’s just say we have a choice of one because you do not want to experience your child being on two different devices from the get-go; you have a choice of one.  Is the insulin pump the choice?  Or do you go with a continuous glucose monitor (CGM)? Conventional wisdom seems to be that ‘the pump’ is the way most practices tend to lean and I’m just not so sure anymore that the insulin pump is my first choice anymore; and I want to tell you why?

Very quickly; the insulin pump has insulin entering your body 24/7 and before each meal you dose more to cover the food about to be eaten.  The CGM is a device worn that checks blood sugar continuously and blood sugar readings are constant, and also if one is trending high and/or low the device informs of that as well.

To be clear—-they are both incredible marvels of research and development and given the choice, I think anyone would/should be wearing both.  Because I believe knowledge is good and the more knowledge in front of you, the better care in making decisions.  I also do not have diabetes and I have never worn either device for any length of time over 5 days; so the decision to wear both, one, or none; is up to each individual/family.  I want to be clear about this from the get-go.

But I also believe in dialogue for that is how we all learn.  So for the sake of this discussion, the choice is that your child will not hear of wearing two devices; the choice is one—–which one is the choice?  I get that if your child is old enough you will speak to them and discuss it, and a decision will be made.  But is there a choice of one device over another?  Yes, it is everyone’s individual choice; but what do you choose and why?  I would REALLY love input from adults living with T1D, as well as parents.

But before I tell you why to my reasons, I want you to know that I want you chime-in on this because it is a very important issue and decision.  I’m not saying I’m right, and I want to present all thoughts because newly diagnosed families will see this and I want them to see both sides of the discussion.   But you cannot just ‘chime in’ with just a choice, kindly give the why as well.

If I was back at the beginning (when Kaitlyn was diagnosed; CGM was barely a dream and pumps were really in their infancy on general use—-the take-away here is also that the development and research in the diabetes world is moving faster than you think, although never fast enough) and the choice was only one, I would choose a CGM.  I say that based on a few observations.  With one child choosing MDI (multiple daily injections) and one child on an insulin pump; I have the luxury (THAT is not the right word here) of observing both means of insulin delivery.

When done correctly, both seem to work with people very well.  They adjust and they make both means of delivering insulin work, and work well.  The ‘pain’ of shots with the ‘pens’ is so much less than it used to be.  The decision of both is based on the level of glucose.  No adjustments can/should be made without knowing one’s blood glucose level.  If you were able to know what your blood sugar was, not only at a given-moment-in-time, but also knowing which direction one was ‘trending’ in a certain direction; you can make choices to avoid swings.  If you can avoid swings, you can also avoid(lessen) those horrible feelings of being both very high or being very low.

Getting the ‘insulin in’ is crucial, but having a window of seeing blood glucose is worth its weight in gold.  It is ‘those numbers’ of which everything you do is based, so it just makes sense to me that the clearer that picture is, the better the choice of ‘what to do next’ can be answered?

So given that I must make a choice, I’m wearing a CGM.   But that’s me.  What do you say?  Kindly post your answers as a reply to this article so everyone can share in reading the discussion.
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This Man Saved Your (Your Child’s) Life…..What Do You Know About Him?

BantingNovember 14th, as World Diabetes Day, was not a random day.  It’s the birthday of Dr. Frederick Banting.  Dr. Banting was the lead scientist in the discovery of Insulin in 1921.  The amount of lives that have been saved since that tome could probably never be counted.  There is a movie floating around out there, ‘Glory Enough for All”.  It was a TV movie in 1988 and if you go to you tube you can see many segments of the film which is a scenario surrounding Banting and Best’s work.  With Doctor, or Sir, Frederick Banting’s birthday just two days away……I thought I would give you some facts about the man who saved so many…..facts that you may or may not know.
>He is Canadian and was born in Ontario.
>He was married twice and had one son, William (First one lasted 8 years—ended in divorce)
>He was actually killed in an air disaster on February 21—-he was only 49.
>He was a painter
>In 1923 the Canadian Parliament granted him a Life Annuity of $7,500 (according to dollar times.com that would be worth 103,424.11in today’s terms).
>He served in both WWI and WWII
>In 1923 he was elected to the Banting and Best Medical Chair (and here is what I love about this); which was endowed by the Legislature of the Province of Ontario.
>He was an M.D. and also a Lecturer in Pharmacology
>Best, with whom Banting did his work was a medical student at the time and, of course, would become Dr. Charles Best.
>interesting enough, the Nobel Prize in Physiology or Medicine he won was shared with J.J.R. Macleod who gave Banting the facilities for his work.  Best received little recognition compared to these two but IT IS stated Dr. Banting shared his money from the award.
>He was Knighted in 1934

So now, perhaps—you know a little more of the man who saved my children, your children, and millions of others and is responsible for keeping them alive each day.

In his honor why not commit to doing just one thing on his birthday to help educate someone else about diabetes. Hang a poster, speak to someone,  and/or do something that spreads the word about diabetes education.  Education was a big part of
Dr. Banting’s life. Sharing education is the least we can do to pay homage to a man who has done so much for us, like saving the life of our loved ones……….don’t you think?

Happy Birthday Dr. Banting…………………………………….and THANK YOU!!!!

I am a diabetes dad.

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There Was a ‘Back Then’, Before……..Who Would Live Like That????????

Back in timeBefore.

Heavens; what did we do ‘before’?

When I was at dLife, Richard found his way into our forums and chats and once I became a regular in the online community Richard would always ‘pop in’ here and there adding his golden nuggets of incredible information.  You see Richard has been living with diabetes for 67 years.  That’s right, 67!

This week, while at the Children with DIabetes Friends for Life Conference he had a ‘first timers’ ribbon on.  Now being in his seventies, the man still looks to educate himself and be part of the diabetes community; doing something for the first time after having diabetes for 67 years.  If that doesn’t humble you, nothing will.

After meeting Richard, I was thinking on the plane ride home from Orlando; what it must have been like living with diabetes when Richard was a young boy.

I know all of the changes that have occurred since Kaitlyn was diagnosed 21 years ago and there have been so many more since Richard was diagnosed during the 1940s.  It makes me wonder what in heaven’s name we all did before……..before……..SO MUCH!

Imagine our world without devices like pumps, fast-reading glucometers, small needles, CGMs; Imagine our world without CWD, JDRF, DRI, The Diabetes Advocates, The Diabetes Hands Foundation, and so many other areas; Imagine our world without Twitter, Facebook, Instagram, and Pinterest; Imagine our world not connected and not being able to be with each other in the many ways available to us.

Imagine.

We now live in an instantaneous world which readily is available to supply and share information.  Our meters are the fastest they have ever been, and there is even discussions of things like the Bionic Pancreas and the BioHub; words that did not even exist 5 years ago, much less sixty-seven.

The world is forever changing and changing at a pace that on one hand does not seem fast enough but in another; faster than anyone could ever imagine.

When people like Richard were testing urine in a test tube 40 years ago, what would they have said when told that someday you will have something that will dispense insulin automatically?

We are now living in the fastest world of ‘now’ becoming ‘before’ than any other time in our history.  Just a shame that it is all not fast enough……isn’t it?

I am a diabetes dad.

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Why is November 14th Such……or Some Things You Might Not Know About Sir Frederick.

Happy Birthday Fred.  Yes it is November 14th, the birthday of Sir Frederick Banting, one of the major forces in the discovery of insulin.

Thank you Fred for saving our children’s lives.  Were it not for you, we would REALLY have a problem. 
Here are some items you may not know about Sir Frederick Banting that you may find interesting. 

He received the Nobel Prize in 1923 and was the youngest to ever receive the award in physiology/medicine.

He received the award in his 33rd year of life where he dedicated his life’s work to perfecting insulin to be distributed to the masses.  (Thank you for that too Fred!)

He was married twice and had one child.

He loved to paint.

He was knighted in 1934.

He died in his 50th year on February 21, 1941, as a result of injuries received in a plane crash while in route to test aviation equipment.  He worked with the Royal Canadian Air Force in testing equipment that would help pilots at high altitudes.

He was nominated as one of the top 10 Canadians who ever lived by a poll run by the Canadian Broadcast Corporation.

So I thought on this day, Diabetes Awareness Day that I would give you a little inside information on the man who saved the lives of our kids and all those who have diabetes. Thank you very much Dr. Banting for all you have done.  You have saved millions of lives…….including my two children.

The picture above is well-known to Canadians and sits in Sir Frederick Banting Square in Ontario, Canada.  It is the Flame of Hope, which was lit as a tribute to not only Frederick Banting but to all those who lost their lives to diabetes.    It would seem that those who worked to preserve his name also knew that in as much as insulin is probably one of the greatest life saving medical advances ever discovered, it is still not a cure. 

The wording on the plaque includes these words: “…..This flame will burn continuously and only be extinguished when it can be declared that a cure for diabetes has been found…..”

Amen!   Thanks Dr. Banting.

I am a diabetesdad. 

P.S.  Hear a message from Dr. Camillo Ricordi of the DRI for this special day.  Click here.

 

Information from Flame of Hope Committee, Wikipedia, Nobel Prize Foundation, Biography.com