World Diabetes Day

In Memoriam, continued

Last year’s World Diabetes Day post honored those we have lost too soon due to insulin access issues, kicking off the tradition of a bittersweet yet necessary memorial.  Let’s take a moment to honor those names again, as well as additions to the list, for WDD 2018:

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Antavia Worsham (22 years old; USA)

 

 

  • Others worldwide whose names we do not know

 

*Stars indicate new names added to this year’s WDD blog

 

I know that my list this year is not fully extensive.  While I have seen some news articles about insulin access deaths over the past 12 months, I admittedly do not know every name, nor many relevant details of each story.  It is not my prerogative to add further pain to families who have lost loved ones by hypothesizing here.  That said, if you have applicable names which you wish to add to our memorial, please contact me and we can update the list accordingly. 

On World Diabetes Day 2018, I consider two main points:

  1. It remains unconscionable that there is no cure for diabetes.  Don’t ever expect me to be quiet about it.  😉  We deserve a better world free from diabetes.
  2. Mostly, though, I reflect on this headline: Sword-wielding Grandview man killed by police may have needed insulin

I’d argue a more accurate headline would read: DISCONNECTED HEALTHCARE SYSTEM CONTRIBUTES TO YET ANOTHER PREMATURE DEATH OF A KIND PERSON WITH DIABETES

I look at the picture of Mr. Nicolas included in the news link above, and I see a human being.  I see a person with diabetes.  I see one of us.

I see a healthcare system that failed someone who sacrificed for us- a Veteran.  Although there is an ongoing, polarized debate about police training in our country, I do not write this blog to fuel that discourse.  I imagine outcomes like Mr. Nicolas’ case are always excruciating, no matter the perspective.  As a general rule, I do not speculate on others’ mental health, so that won’t happen in this blog, either.  The story speaks for itself, loudly and clearly.

When this article first circulated on Twitter, I noticed some bold commentary- the usual, “That could never be me or my loved one!” rationalization game that we all use to appease our own emotions from time to time.

“I’d never own one sword.  Never mind two!”

“My blood sugar doesn’t get that out of whack!”

And the infamous, “Just get your insulin at Walmart, Susan!”

Ahem.  Our “privilege goggles” have fogged our points of view again.  Let’s get real: This could be any of us given the perfect storm of social determinants of health (SDOH) and circumstance.  If not for our respective privileges of race, socioeconomic status, diabetes industry ties, psychosocial history, luck- whatever it may be- we very easily could be or could have been in Mr. Nicolas’ shoes, with swords in our hands, begging for our lives in the only conceivable remaining way.

Reflect on the worst low blood sugar of your life, when you were completely disoriented, slobbering on a jelly donut while the room spun in circles.  Or, perhaps, remember when you were diagnosed with type 1 diabetes, in diabetic ketoacidosis (DKA), with a blood sugar of approximately 903 mg/dL.  Scientifically-speaking, our brains were affected in both of those scenarios.  We were not thinking clearly.  We were desperate for help, and health, and relief.

Alas, when I look at Mr. Nicolas’ picture in the sword-wielding news article, I don’t see a man who was having a great day and picked up two swords for the heck of threatening others.  I see a man who had to wield swords in order to be heard, for a moment in time.  Without being able to obtain insulin, he was going to die.  The tragedy is that before our society offered proactive help- affordable, accessible healthcare; emotional support resources; compassion rather than judgment- Mr. Nicolas’ life was lost too early.

How very much work we have left to do.

 

My prayers are with those missing loved ones gone too soon, all for reasons circling back to healthcare access.  The numbers and the stories are too many over the years.  The grief is overwhelming every time.  By renewing attention to Mr. Nicolas’ story today, I do not intend to refresh the anguish of his family and friends.  Rather, I want them to know that they have someone in their corner who believes them, and a world full of diabetes advocates who echo their passion to enact meaningful change.

May we continue to think of you and honor your stories, on World Diabetes Day and in all advocacy ventures going forward.

 

 

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In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Antavia Worsham (22 years old; USA)*

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and/or* the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

*This post was updated on April 26, 2018.

 

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World Diabetes Day: What I Want You To Know

“What’s that blue circle on your Facebook picture?” is always a loaded question.

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Firstly, as the international symbol of diabetes, the blue circle is like the communal social media head nod which symbolizes, “I get it,” to others like us who encounter the image.

Not everyone chooses to flash the blue circle, and that is okay, too. We all cope with this disease in our own ways.

Secondly, let’s be honest. The blue circle magnifies the attractiveness of any picture. It’s an unwritten rule. Blue circle = automatically cool.

Thirdly, there is a tale of strength and perseverance behind every blue circle. The story goes something like this:

When speaking to someone not intimately familiar with diabetes, I want that person to know that diabetes is not anyone’s fault. If you want to blame something, point the finger at rebellious islet cells, environmental factors, viral triggers, genetics, and the perfect storm of other elements. But please, do not blame the human being.

Society preaches the message that diabetes is a disease brought on by poor choices. “You ate too much sugar, so you are to blame for your type 2 diabetes. Just lose weight and you’ll be fine.” Phrases like these are tossed around daily in the movies, in comic strips, and in casual conversation. Yet the reality is that if any type of diabetes were so simple to acquire, the whole world would be diabetic.  

Type 1 diabetes, an autoimmune disease, does not discriminate according to who collected the most Swedish Fish from the birthday party piñatas as a kid. Instead, it strikes us innocently and without fair warning. We have lost children with their whole lives ahead of them this year because our healthcare system failed to identify the warning signs of diabetes in time. Extreme thirst, blurry vision, weight loss, frequent urination, and other symptoms should ring a “diabetes bell” in your mind after reading this. When in doubt, we implore you to play it safe and see a doctor immediately.

There are other types of diabetes, too: gestational diabetes during pregnancy, cystic fibrosis-related diabetes (CFRD), latent autoimmune diabetes of adults (LADA), maturity onset diabetes of the young (MODY), and other offshoots of the disease process.

Allow me to play devil’s advocate for a moment. Although no one singlehandedly causes any form of diabetes, let us pretend that the overly-simplified media theories are correct: Ally eats a cupcake, so Ally deservedly acquires diabetes. I “deserve” to take ten shots a day for the rest of my life. I “deserve” to wake up at 4:23 am with a blood sugar of 52 mg/dL, half the normal value, fighting to live- if I am even lucky enough to wake up before it is too late.

Now, substitute someone you love in place of our fictional Ally character. What if Ally was your sister, your father, your favorite high school Math teacher, your best friend? Can you accept the status quo of a world in which someone you love has to go through all of that to survive each day? Could you handle the emotional burden? Wouldn’t you get upset, too, when the severity of the battle was diminished by a corny joke on a TV show?  Isn’t the pain still there no matter what caused the disease?  Aren’t these people still important to their loved ones?

But, it’s no big deal because fictional friend/sister/father/teacher chose to eat the cupcake, right? (I’m taking my coffee with a heavy dose of sarcasm today.)

When we rationalize away the seriousness of this condition by poking fun of Wilford Brimley commercials, what we are really saying is that this is too much for our society to handle. If we laugh it away, we mistakenly presume that diabetes will not touch our lives at some point. Statistically and scientifically-speaking, that is a losing bet to make.

We must, instead, be brave and face the truth that defines this disease: Diabetes is no one’s fault, it is a profoundly-complex condition which is difficult to tame, and we owe it to ourselves and to future generations to lessen its toll by advancing technology and research.

The blue circle represents any of us and all of us. We have endured thousands of needles in our lifetimes. Diabetes changes its mind every day. Given the same scenario, what works on a Monday may not work on a Tuesday. Insulin sustains life, but each dose is an educated guesstimate. One miscalculation can be deadly.

We do not tell you these details because we want you to have a pity party for us. We can do anything. One of us, Sonia Sotomayor, sits on the Supreme Court of the United States. Others have run marathons, graduated from medical school, or written books. We have an enduring human spirit which rises to the occasion of fighting this disease every morning.

This November 14, when you see a blue circle on World Diabetes Day, do not simply scroll right by it. Pause and look at the faces behind the superimposed shapes. Recognize the human being who is affected by diabetes, who is more than a blue circle can ever truly describe. Marvel at his or her resilience. Perhaps donate your weekly coffee fund money towards a diabetes cure effort. Walk with us. Pray for us.

And the next time you hear, “What’s that blue circle all about?,” respond with a story about one of the strongest people you know- someone you love who lives with diabetes.

Thank you.

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^ Longtime type 1 diabetics, having fun despite diabetes  ❤

World Diabetes Day 2014: The Day The Whole World Turned Blue

We are all together in a great sea of blue, and if I do say so myself, blue looks good on us!  Who doesn’t like watching the blue ocean waves crash along the shore?  Who hasn’t wondered what goes on all the way across the pond?  We all know that diabetics wake up and fight every day in every corner of the globe.  That is why blue unifies us.  Now it is our time to tell others about our lives with diabetes. No matter the type of diabetes, we share a universal goal of taming the diabetes beast, living well, and supporting each other.  We dream of a cure together.  We know that the potential for a cure is there.  We want future generations to speak of diabetes as a mythical monster that some brave souls once crushed into the soil, never to hear from it again.

There are plenty of wonderful research and advocacy endeavors going on right now. We all have our personal favorites and I encourage any cause that lessens the burden of this disease. Today, I ask you to take a moment to look at the Faustman Lab at Massachusetts General Hospital.  For those of you who do not know Dr. Faustman, suffice it to say that she is a phenomenal, witty, kindhearted, passionate human being first and foremost, and these qualities make her an innovative doctor. I am a bit biased, but I would love to see her cure this disease.

If you are unfamiliar with the Faustman Lab, please check out their website at faustmanlab.org.  If you are looking for a new cause to support, forego your morning cup of coffee and instead send a few dollars to Faustman Lab. If you already support the Lab, please continue your support. The research is promising, the process is not invasive, and the team behind it is fully dedicated to conquering autoimmune disease. I am not a scientist, but I believe solving the complexities of one autoimmune disease will be to the benefit of many other diseases, whether defined as “autoimmune” or not. The more we understand about the malfunctioning of the human body, the better.

Thank you for your support, and I truly hope that everyone enjoys World Diabetes Day 2014 whichever ways you choose to celebrate. May your blood sugars be stable, your bodies and minds able, and your hearts basking in the glow of the diabetes “label”- for this one day, at least.  Own it!