NEWSBREAK: A PSA on Missed Diagnosis T1D—–PLEASE HELP GET THE WORD OUT!!!!

spread teh wordWhen doing a PSA or public service announcement, it’s always a fine line to capture all you can in just about 30 seconds.  I have been working on this PSA for months, understanding that the viewer will probably know little or nothing about diabetes.  Redoing, cutting, tweaking, and the entire time realizing that the REAL message holder is you; the video just reinforces your short message.

PLEASE HELP GET THE WORD OUT.  This is something WE ALL can do.

Please send this article to anyone in the diabetes community.
BUT……send the link to all of the social media locations that are not diabetes related.  PTA pages, your inner circle, sports pages, ANYWHERE there are parents…..it is a short video of around 35 seconds; BUT IT COULD save a life.  Most important is your quick personal message that accompanies the video.

This is the link to the PSA:
https://youtu.be/hm12lcM4zkI

Take this link and post it with your message.  Keep it really short;
“Hi, this happened in our house before we knew…please watch.”
“This is something I knew nothing about before it happened, please watch and be sure.”
“This 35 second video could save a life……please watch.”
“My child had this disease and we did not even know at the beginning.”

(If this pertains to you, and you feel so inclined)
“Our child became seriously ill, I thought it was just a flu.  Please watch.”
“We lost our child, how I wish we knew about this.  Please do not let it happen to you.”

I hope you like PSA…..let’s make a difference together….let’s get the word out there.

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

 

 

Diabetes is a Disease. Diabetes is a Business. We MUST FIND Middle Ground.

Middle GroundDiabetes is a disease.  No question to that point.
Diabetes is a business.  Don’t fool yourself for one second to think it’s not.

With the ‘buzz’ circling about the recent decision about insurance giant United Health Care allowing Medtronic as their preferred pump of choice and leaving others to scramble—-we need to take a hard look at this situation.

As I stated yesterday, this has been going on for some time and these decisions are nowhere near new.  I do not blame Medtronic, from a business perspective, who would not make this deal?  And it is there I lay my point for today’s article; ‘from a business perspective’.

As you are well aware, these decisions impact people.  Adults and children alike who live with diabetes (although United Health Care HAS STATED that at this time this decision will not impact children).  But as I stated and will continue to say; this recent decision is not a new development in how business works.  To all those who are out there now raising a ruckus about it for the first time, I state—-welcome to the party.

We can run around blaming Medtronic and United Health Care or we can bring our collective minds together to figure out how we can change the parameters of patient choice in this country that is much worthy a discussion than this recent decision. THIS IS THE DISCUSSION.  A huge undertaking.  But certainly worthy of a dialogue.  Not sure how to do this, but collectively we should be able to figure something out.  While we are at it; let’s bring a representatives/advocates from other disease states to the table…..they have to be fighting this battle as well, don’t you think?

As we look to collect the many stories out there, which we will need and I encourage you to share your insurance story here; I caution with everything I know that this is a roll-up-your-sleeves-and-dig-in kind of battle.  We MUST RAISE OUR VOICES but spending our energy blaming companies for their business choices is NOT the way to do it.  We have got to come together and figure this out.  We have to bring the right people in the room to advise us.  We have to collectively seek answers.

Certainly having a diabetes company involved with us in seeing the bigger picture cannot hurt.  Any takers?

Over the years there have been many large companies that have tried to change the parameters and have failed because, mostly, it was nothing more than a marketing campaign to ‘show’ how much they care.  If we all keep our focus on those living with diabetes and allow them the choices they deserve…..we can all win.  Having diabetes is no one’s choice; but the best way to manage diabetes……………absolutely should be.

Let’s come together and figure this out.  It has to make sense to the business platform as much as it does to the patient’s desire…….I’m confident there is middle ground.  Let’s come together and seek what could work for all.  Anyone want to meet?

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

NEWSBREAK: Diabetes Voices…..We REALLY Need You NOW!!!!

The problemThere are companies that serve the public with more feeling toward their stock holders than toward their patients.  I have said time and time again, health insurance companies fit this bill more than any other company I know.  I also believed that little can be done to fight these corporates giants…………..until recently.

There was a two-year-old young lady who was denied by Heath Insurance giant, Humana, an insulin pump and a CGM even though her doctors stressed the importance, their policy allows it, and her mother followed every step necessary in application and appeal.  But once the Diabetes Community became involved in an avalanche of feedback; the young lady not only received her devices; her mom shared that she received a letter of apology from Humana.

Our voices were heard.

Little did I think, at that time, that it was a testing ground for a larger and swelling problem facing so many of the people who battle diabetes.  It’s actually a problem so many are well aware especially with the recent letter by a pump company that they were squeezed out of a health insurance company’s coverage-plan.  Insurance companies making decisions on what gets covered and what does not get covered.  Many times leaving the patient out in the dark on what to do.

Recently United Health Care made the decision that only one insulin pump would be their ‘preferred’ insulin pump leaving many to scramble or prepare to fight to keep the pump they use and have covered.  Another insulin pump company released a letter stating the unfairness this will be toward the many patients who use their pump, as well as others.   My cynicism tells me that the pump company was not as concerned about our welfare as much as their own pockets except that the company is Tandem, and Tandem is a different company for many reasons as many of us have come to know in the diabetes community.  That said, Tandem outlines a growing problem.  And the diabetes community is gearing-up to react.

Decisions being made that patients have little, or no, say but must bear the full force of inconvenience and or healthy concerns needs to be changed.   This is about insurance companies making decisions based on ‘bean counting’.  If 70% of their covered patients use the device, and they can negotiate a really good price and under-cut the competition; great for the 70%.

Problem is, that leaves 30% of a health insurance company patients to figure out if they are ‘grand-fathered’ in or fit the bill or have to switch devices.  Multiply that by quite a few insurance companies….and we have a problem……a BIG problem.

This problem is growing.

What I learned from our situation with Humana, is that our voices matter.  But they must be loud; and they must be clear.

This is not about one insurance company’s decision; this is not one diabetes company accessing a better deal for their stockholders; this is about US.  US not having a choice in what decisions are being made, but yet, have to burden the brunt of something that impacts diabetes care hugely.  We need to have some say.  Right now we have little; if any.

We need to collectively do something.

The first thing we need to do—is collect stories—–lot’s of stories.  Let your voice be heard.  If you have been denied anything related to diabetes; if you have had your coverage changed; if your insurance company has changed anything and not asked your input in any or all of the examples listed, or you have your own story—-please share your story here.

There will be more on this topic in the future—-but for now—do one thing—–go to the link above and share your story.  Do not be afraid to use names and be brutally honest what it meant, and how it, impacted you.

The first step is to show a problem.  Please do so.  Click the link and tell your story.

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

 

A Little Girl Who Lost a Battle……..But in Her Name, the War Will Be Won……On Her Birthday.

Hailey faceToday is my birthday.  I am one blessed man.  For 58 years (I know, you thought I was much younger—-okay so lie, it’s my birthday) I have walked this earth and have met the most incredible people.  I AM ONE LUCKY guy.  My wish, as I blow out my birthday candles today will remain the same as it has been for over 24 years…..a cure for my daughter, my son, and all those like them.

But my birthday will mean something more moving forward.  Even after 58 years, we can be directed and redirected on this journey.  It changed last week.

Because last week,  I spoke with Vanessa.

Vanessa is a soft-spoken woman who lost her daughter, Hailey, just shy of her 11th birthday, when her type one diabetes symptoms were missed.  That was/is a horrible event that took place just over a year ago.  But Vanessa and her family are a family that believe that Hailey’s life, as short as it was, can have a huge impact on this world.

And she most assuredly will.

She has talked to Darice, Little Reegan’s mommy; and she is deciding whether it be; a law, an initiative, and/or a movement to instruct parents about diabetes awareness will be undertaken in Hailey’s memory.

I was on the phone with Vanessa for a long time last week.  I ask you, if Vanessa and her family are looking to do something meaningful to make sure what happened to them does not happen to others in her daughter’s name; who are we to sit idle?  Not that all of us are sitting idle but surely many more could do more to help.

So I’m inspired by those who have lost so much, so much more than I ever hope to, and continue to look for ways to endure the future and at the same time help others; others they will never know nor ever meet.  I get so much strength from these people.  How they continue is beyond me; and so inspiring to me at the same time.

As I closed my conversation with Vanessa she shared that Hailey would have been twelve this year.
“What date.”
“May 5th; Cinco de Mayo.”

Silence.

Yeah I know that date.  And now my birthday will always be shared with a young lady who will send me a butterfly each year (a favorite thing we birthday-buddies share), and I saw one this morning, to remind me that more work needs to get done.  Hailey sent it to me to remind me, message received.  And I pledge to you Hailey, we will get this done in your name, and the name of others, because we owe that to you.

Happy Birthday in heaven sweetie.

Love, your birthday buddy.

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

Don’t You Miss…….??????

ShipI’m always surprised at one of the questions I receive, very frequently, in this journey.  I do hear, “Do you really think there will be a cure?” often (and yes I do, with all my heart) but I hear one particular question from those who do know me that always strikes me with surprise.  That question is; “Do I miss acting?”

For those who do not know, acting, the theatre and beyond, has always been my dream since junior year in high school when I appeared in my high school production of Godspell.  It would be my first professional show (got paid) and would also be included in my first stint at Summer Stock in Salem, New Hampshire.  I was, and still am, a member of the acting Unions (SAG-AFTRA; Actor’s Equity).  For years, acting was pretty much my life.

Being part of the long-running NYC smash hit, Tony ‘N Tina’s Wedding ,was an incredible experience for me (13 years) and many with whom I was privileged to work with, I’m still in touch.  Yes, theatre, television, movies, I was working in all of it and I LOVED every second.  But being involved in that world is only important because I loved it.  I know many people who were in many different professions when diabetes became the new normal.  I know many people who gave up what they loved as well.

And here is the thing; miss it?  Absolutely.  Regret it?  Not for one single second.

Perhaps I’m being naïve, and that’s okay because it’s my life and I can feel what I want; I also believe we will get to that goal I promised my daughter of a cure (and now my son as well) and the acting world will once again be in my life.  The goal became bigger than a spotlight; it became the welfare of my child.

If not for our children, then for whom?

What did you give up when diabetes became the new normal?  A Job?  A Career?  Sleep?  Not to mention the people who actually have diabetes, what we may have given up, pales in that comparison.  Share what changes you had to make.  This world of diabetes was NEVER supposed to be a profession for me.  One door opened, and another, and another, and another, and they keep opening all the time.  And as much as I keep at it, I also spend a good deal of my own time advocating for various other important diabetes issues.  This is our lives.  And quite frankly, I love it.

I have met some incredible people on this journey, many I love and some are even like family to me.  I think we have made a dent or two along the way as well in the battle.  A battle I will continue as long as there is a breathe in me or until my kids can have some means of a biological replacement producing insulin and monitoring their glucose again.  I have seen many management tools come, go, and even become much better; and I’m sure those efforts will continue with great successes; which is all good.

But I await until such time that this journey is complete….and I can return to my world which is…….to be, or not to be; that is the question?  Until that time I’m in it to end it.

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

Great People Help Our Cause; Diabetes—But it’s Still our Road to Pave!

Doris Roberts With the death recently of Doris Roberts, I reflected on not only just my meeting and working with her in diabetes causes; but with Peter Boyle and with many more in my life who chose to be involved.   Much thanks to the show’s Creator Phil Rosenthal, a friend from my Hofstra days, for caring so much.  I enjoyed working with them and they were not only incredible, they were professional and a delight to work with.  And they are now, both, gone.  A loss to the entertainment world and beyond.

But our mission remains, doesn’t it?  I feel almost as if I owe it to them to work harder; as if in their honor, but not only just their honor.  But many others as well.  It cannot and will not be ‘up to celebrities’ to achieve our goals; that task is ours to reach.

I have heard it said many, many, times.  At committee meetings, at event meetings, in the diabetes community and really across the board.  It goes something like this; “To be successful, we must ‘get a celebrity’ for the awareness of XYZ.”

Really?

First of all, God Bless all the celebrities who take the time from their busy schedules to take part in giving back, no matter what the charity.  It’s always GREAT to have a name representing any organization.  In the diabetes world we have certainly had our share.  Some REALLY BIG names.

But if I said; Dollars Against Diabetes (D.A.D.s Day/DRI), Walk to Cure Diabetes (JDRF), Tour de Cure (ADA) you would most likely know those names instantly.  These events have raised, in excess, of a billion dollars across the globe.  But here’s the thing, they did not gain recognition by celebrity involvement; they gained recognition by YOUR involvement.  You see in as much as celebrity status is nice to point to and say look who is involved; it’s the grass-roots efforts of the people impacted that make the difference……..people like you!

So when we read about another child dying from undiagnosed T1D, and we get angry; AGAIN—-do we actually do anything?  Maybe the folks at http://autoimmunediabetesalliance.org/ are onto something we all should jump on for this November 14th 2016; World Diabetes Day.   Imagine if 1000 people signed up to post 100 flyers in their community.  Imagine if these posters were in a location that were seen by just 1000 people in the course of the time they are hung in a library, a school, a supermarket etc.?

Do the math yet?

That would result in 100 million people seeing the message—-1/3 the US population.
Scouting troops, service organizations, school activity groups—–just print out 100 posters and get them up on or around; but by November 14th.  You can go to the website above; they have great posters and so do:
http://www.testonedrop.org/
http://www.easet1d.org/
http://www.getdiabetesright.org
If you have a site with posters and you are not listed—-PLEASE FEEL FREE TO ADD YOURS.   There’s no monopoly on advocacy.

I enjoyed working with the celebrities over my tenure in this journey.  Many of them.  But still to this day the biggest and best way to get the word out is by us, getting the word out.

If I get enough feed back on this idea, I will reach out to the autoimmune diabetes alliance group to see if we can create a way for everyone to post where they will be running with this idea, wherever in the world.  It was their idea in the first place; and it’s a GREAT idea.

This November 14th; Operation: No More Missed Diagnosis of T1D……………..maybe we can even get a celebrity spokesperson?  You In?

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

If Diabetes was Personified, What would it LOOK LIKE…….to You?

darth vader IIDid you ever wonder what diabetes would look like and sound like if it was personified? Would it be a raging monster with fire coming out of its nose?  Would it be a person who looks sweet enough to invite in and then devours everything in sight?  Would it be a kicking, screaming little kid that you just can’t quiet no matter how hard you try?  What do you think diabetes would look like?

For some reason I have always felt that diabetes had a voice like James Earl Jones.  I don’t know that I actually envisioned what diabetes looked like; just that it sounded like the great actor with the booming voice.  I’m not sure why that is, but when James Earl Jones speaks, one is surely inclined to listen.  And to listen to every word.  He demands that respect.  When diabetes ‘has something to say’, do we not do the same?

I’m sure James will not be happy with me that I gave his voice over to the personification of a disease-state.  But imagine what your day would sound like if you woke up in the morning and you heard THAT voice inform you, (now picture James talking to you) “I took over your child’s night and I kept them up with my unyielding desire to keep blood sugars out of control.”  Couldn’t you almost picture that voice?  Maybe my thought is reinforced with the notion that James is also the voice that played such evil as Darth Vader….that kind of makes sense also….doesn’t it; diabetes and the ‘dark side’?

Here is the thing.  James Earl Jones is one of my favorite actors.  His speech about baseball in Field of Dreams is a classic and one of my favorite cinematic memories of all times.  And what bothers me most about my envisioning of diabetes having that voice, is no matter how great I may think it is, no matter how booming and intense it could be; if it was diabetes—I would still want it to shut up and go away.

Because even the greatness, and my fondness, of the great James Earl Jones would not make me like diabetes for even one second.  Maybe I’ll just go back to picturing diabetes with horns and flame-throwing voice, aggravating, screeching, and annoying character…….diabetes is not good enough for James Earl Jones….he deserves better, and in reality……..don’t we?

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

Join Us Tomorrow and Learn How You Just Might Save a Life.

Save a child's lifeThis is copied directly from the DPAC website page—–if, and I mean IF, I am considered an expert in any way, it is ONLY from working with so many of you who have done so much.
If You are interested in finding out what you might do in your state…..join us tomorrow (12 noon Eastern Time—link is below) and learn how you may save the life of those with the missed diagnosis of diabetes.  Thank you to diabetes megastars Benet Dunlap and Christel Aprigliano; for asking me to join you in this incredible initiative.

Ask An Expert: Tom Karlya – How to ROCK State Diabetes Advocacy

Tom “Diabetes Dad” Karlya joins DPAC to share the success of Reegan’s Rule in North DPAC_ASKanEXPERT_TomK RegCarolina as a precedent for other states.

Why we’re excited.

Tom knows that advocacy happens when people act and where they act. He will share the heartbreak that drove the creation of Reagan’s Rule and how we can honor the children who have been lost to a lack of a timely diagnosis of Type 1 diabetes by working with our state legislatures.

Children with Type 1 diabetes are being missed; their symptoms are dismissed as flu/virus initially; causing extended hospital stays, enormous loss of workdays, incredible family hardship and in some instances, severe brain damage and death in children needlessly.

Learn what has worked.

Join Tom Karlya and DPAC on April 28 at 12pm Eastern by registering here.

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

 

Who. who. who? WHO?

OwlUnfair insurance practices. Fund raising for diabetes causes. New laws needed to protect the rights of people with T1D.  Patients dying, or becoming seriously ill, because of the missed diagnosis of T1D.  Schools not understanding their students facing T1D. Diabetes in third world countries.  People unable to afford diabetes supplies.  Supplies covered, or actually not covered, by Medicare/Medicaid.  Meter accuracy.  Camps.  Diabetes education.  The list is almost endless.

When it comes to diabetes, there is NO SHORTAGE of causes surrounding the disease.  What there is a shortage of, are the people to get the job done.  The plain and simple truth is that if we, as a community, do not fight for these causes…..who will?  Who understands better than us?  Who can speak better than we can?

It is, and will remain, up to us.

If we take that as mere rhetoric, if we say I do not have time, or if we say let someone else do it……much WILL NOT get done.  And maybe I have to resign myself that it is what it is and what gets done will get done.  People who read this very well may be the very same people doing more than enough already.  And if that IS you, than thank you for caring.  Caring for my kids, and your kids, or yourself, or the millions of others out there who are on this journey.

It just seems to me, that if there are almost 30 million people living with type 1 and type 2 diabetes in the United States (worldwide, that number increases), and if each had two people who care about them; that is an army of 90 million people.  If just 1% of that number were ‘doing something’—-ANYTHING—-that would mean 900,000 people are doing something to better the lives of those who battle diabetes.

There are not 900,000 people doing something…….and that makes me sad.  Just 1%.  So I ask, with a list a mile long…………………who will make a difference?

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

Do You Know Anyone with T1D Who Might want a Baby Some Day???……Read…….

Ginger babyI’m not a person who merely likes Ginger Vieira, no let me be crystal clear about this from the get-go.  Ginger is one of those people who if you know her, just if you hear her name, you smile immediately.  It’s safe to say that Ginger is one of my favorite people in this diabetes world.

She keeps it real.  Her writings.  Her video blogs.  She says what’s on her mind.  She is funny, delightful, direct, and more than anything else; she is knowledgeable.  She has had diabetes for a long time.  She knows what it’s like to live with it and NO ONE shares what it is like as Ginger does.  She will make you laugh, cry and most of all……think.  When I found out that she was having a baby, I was ecstatic because if you know Ginger, you know that there would be one VERY LUCKY baby in this world.

Ginger’s entire persona is electric.

As is Ginger’s style; she wants to help others.  She is writing a book.  A book from the point of view of someone who has type one diabetes trying to fulfill one of the happiest dreams of any couple……giving life.

Here is the deal, and Ginger explains this on her video, women with type I diabetes having a baby, is a very small market according to those in the publishing world ‘who are in the know’.  But this does not change the fact that there are things women should know about having a baby while balancing type one diabetes.  So rejection after rejection led Ginger and her CDE Partner, Jennifer, to venture out and do this on their own.

I got involved.  But I got involved not because I think the world of Ginger (which I do).  I got involved because at some point in this world, my daughter with type one diabetes, will probably want to start a family.  I want this book on her shelf when she decides to do that.  I want her to hear from someone who knows.  Someone who has been there.  I want, as I have always wanted, for her to have the tools to make sure diabetes does not get in her way, yet again.

I want her to do that badly enough, and I trust Ginger well enough, to help her get there.

If you have a daughter, or had a baby, or know someone with type one diabetes, help Ginger and Jennifer prove the publishing world wrong showing just how important this book about being pregnant, and having type one diabetes, will be by giving a couple of bucks at their program on kickstarter.  They have 32 days to raise just $3,000.  A whole bunch of people giving just a couple of bucks…….very doable.

Click here to see Ginger’s incredibly charming video (THIS does not surprise me at all). And see how you can get involved. Even if you chose not to be part by donating, you will love her video.

Ginger is accomplished in many fields, book author, inspiring video blogger, inspiring blogs….she is not new at this ‘writing and inspiring thing’ and to be honest with you, I did not invest in this to help Ginger; even as much as I believe in her—–I gave a couple of bucks because my daughter will benefit from this book.  So will someone you know.  Take a look.

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