Good Vibes

I am excited to join HealthiVibe’s patient steering committee, composed of key opinion leaders from diverse areas of healthcare.  Together, we are dedicated to driving the patient advocacy perspective in clinical trials and drug development.  My disclosures can be found here.

I am not shy about my feelings towards a type 1 diabetes cure: We are long overdue.  Clinical trials and drug development get us that much closer to improving quality of life for people with various health conditions.  I appreciate the opportunity to work with the creative minds at HealthiVibe and on the steering committee to foster this greater cause, to hope in a better future.

Many of my close friends are Veterans and Service Members.  They admirably answered the call to serve a purpose larger than themselves.  They sacrificed their time during deployments, as did their families who supported them from afar.  They, perhaps, went through physical and emotional pain while in service, and afterwards.  They signed up when not everyone is brave enough to do so.  They knew that their contributions could make a positive difference in the world.  They are modern day heroes and heroines.

I view clinical trial participation and drug development similarly.  Those who sign up for these scientific inquiries sacrifice their time.  They take the pledge knowing that not everyone else does, and that there may be emotional and physical effects on their lives.  They show up anyway because they can make a difference.  Even if a clinical trial does not yield the best case scenario results – diabetes or cancer is not yet cured, for example – we still garner invaluable information from the process.  We learn more about what works and what does not.  We cannot get there without those who volunteer, who serve a purpose larger than themselves much like my Veteran and Service Member friends.

We are currently at a crossroads in healthcare.  On one side, innovation and opportunity are promising.  On the other, access and affordability remain real world barriers to lifesaving and life-sustaining treatment.  We need cures and attainable, high-quality healthcare for many conditions, from type 1 diabetes and more.  And to get there, we need clinical trials and drug development to meet those in the trenches where they are, to lift up the mission for improved quality of life for all.

I welcome your insights as I work closely with HealthiVibe’s steering committee to advise on such matters.  Thank you to HealthiVibe and to the members of the steering committee for the opportunity to collaborate.

 

Cheers,

Ally

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5

Very Light, No Sugar recently celebrated its fifth blogoversary.  I am forever grateful for the people in 109 countries(!!!) around the globe who have visited here.

A lot has changed since I ventured out into the healthcare advocacy realm 5 years ago.  Having been diagnosed with type 1 diabetes (T1D) just before my third birthday, advocating has always been in my blood, literally and figuratively.  I still believe that #weneedacure.  And I still believe that all people with diabetes, or any other health condition, deserve dignity through accessible, affordable, high-quality care.

I marked my fifth blog anniversary by waking up in a stupor, thanks to skunked, expired insulin contributing to high ketones.  “I’m so over all of this,” I lamented through a series of tweet-and-deletes.  The irony was not lost on me.  Diabetes waxes and wanes and manifests over a spectrum.  At the heart of it all is a human being simply wanting to improve quality of life (QoL), to be in the green on those numbers charts, in the “doing well” category.

If I am being totally honest, although I look back and cringe at some of the early, corny blog posts, I am jealous of that former author, that version of me.  She had so much innocent hope in the future, in the good capabilities of healthcare.  Perhaps time in the trenches has jaded me over time.  I have seen the good, the bad, and the ugly in healthcare advocacy.   I still believe in the good.  But I have removed my privilege blinders to be more realistic about the various barriers to care.

Personally, I have survived a lot that I never anticipated, and I did so very publicly.  Sometimes I wish I could crawl back under my rock, and do the whole survival thing quietly and humbly.  But there is another part of me that is committed to keeping it real, to voicing the raw truths even when it is painful to do so.

There are so many good eggs in diabetes-land, many of whom I have enjoyed collaborating with or sharing a coffee / beer in person at various events.  Others are Twitter friends, known by their creative @ handles.

The longer I am a piece of this diabetes online community fabric, though, the more I notice the glaring discrepancies between the Haves and the Have Nots.  I acknowledge my own great privilege due to graduate education and job, while still recognizing that diabetes is pretty damn difficult no matter what.  I cannot fully understand the plight of those with less than me, nor do I purport that I represent all of them.  But, I do have legitimate concerns for our future.

How can we help The Whole in diabetes if we do not lift up all voices?  We celebrate amazing tech innovation for some, while others die painfully of ketoacidosis, their breathing labored, because insulin is not readily available through no fault of their own.  I look at all of this and wonder where I fit.  Have I assumed the role I was supposed to play?  Have my interests moved on to mental health?  Do my interests need to be separate and distinct? (Heck no).

In the words of my favorite poet, Andrea Gibson, “It hurts to become.”  I have done a lot of becoming over these past 5 years.  And, as a community, we all have become, too.  We have more to do.  More voices to hear.  More time to listen.  More lives to save.

I do not know where the next 5 years will lead.  Lately, I have been focusing on the here and now.

Thank you for letting me be here, with you, riding the wave while it lasts.

Much love, always.

Ally

 

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Remembering

BetesOnTap selfieDanielle, Alex, and Me Boston 2018

The healthcare advocacy world swiftly teaches you about vulnerability.  By virtue of showing up, you innately care.  You meet wonderful, kindhearted people- those friends you just know will go straight to heaven.  And sometimes they are gone too soon, and we feel that raw emotion of loss, here, on this earth.  We are suddenly more thankful that we paused for a moment during the fun to take a group selfie, to remember that day.

Alex and Kim, you are both on my mind and in my prayers a lot this week.  May we learn to be as graciously brave and good as you.

Monthly Post

Is it obsessive-compulsive behavior to post here each month for the sake of writing somewhat regularly? Or is it simply hope? Perhaps this- once a source of joy, a shared mission, will feel that way again, somehow.

another month

by which to create

Representation

If you step in the logical flaw rabbit hole

of proclaiming to represent

ALL PEOPLE WITH DIABETES!!!!!,

then the least you can do is

own it.

 

Was your six-figure “non-profit executive” salary there

to represent Shane Patrick Boyle

when Go Fund Me fell fifty dollars short?

 

Have you ever seen a human being in DKA,

breathing labored, blood poisoned?

Would you look her in the eye

and still have the audacity to suggest,

“This could all be easier

if you just took the bus to Walmart,

bought cheap insulin there,

took a wild guess at a 3:52 am dose

of one of the most powerful Rx’s on earth.”

 

Her breathing is labored.

Her blood is poisoned.

There is no more room on this bus.

 

I’ve written long enough

to know that I, too,

have made mistakes.

The ‘disease warrior’ metaphors

The representation claims

Forgetting to check my privilege

at the coat rack

Running my mouth too loudly

to listen

 

How can we pretend to represent

all people with diabetes

when we have strong Wi-Fi connections

the acquired ability to read and write

the color of the skin we were born with

the restocked fridge,

while so many of our diabetes brothers and sisters

are dying slowly and painfully

without access to the prescribed air

we breathe?

 

Our stories are the only ones we can tell fully.

To say otherwise is to snuff out others’ lights

which have already borne enough pain.

 

There has to be a better way

to make room on this bus.

 

 

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.