In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 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 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.

 

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Explanation of Benefits

THIS IS NOT A BILL!!!
(Thank God)
This is simply the preface to the bill
so that you can be prematurely pissed off
about who will be taking away your money

 

The EOB outlines the costs
What you owe the doctor
What your insurer owes… someone
What debt your existence owes
to a society that doesn’t really care

 

That Advil pill at the office even though
there’s Advil in a Ziploc in your purse?
Ten dollars. The cup you pee in?
Five ninety-five per ounce
Don’t spill it when you close the window.

 

Does a smile at the reception desk
bankrupt the operation? Imagine a world where
insurance cards do not dictate our worth-
where compassion is doled out, unmeasured
and it’s okay to come back for seconds.

 

Can we quantify the waiting room tears?
The traffic, the tropical island vacation
with family swapped out for appointment slots.
The doctor who is not seeing her lunch break
will see you now, instead.

 

You both are tired of fighting
a system that feels it is better to explain
“benefits” than to explain why
none of this is fair, why your pain
will not break with the fever.

 

We can’t explain why the cancer spread,
its roots strangling the beating heart.
We can’t explain the silent prayers
sent up in parking garages late at night
when the city lights blink off.

 

The explanation of benefits is simple, really:
Sit with us, outside on the sun-bleached bench
On what our brains will dub the Bad News Day
where the whole world stops and all that is left
are the parking garage prayers said outside, together.

 

The Cure

The Cure is the go-to daydream

What we tell ourselves while entwined

in the arms of a lover in a Queen size bed

to calm the “what ifs” circulating in the quiet

 

If we keep calling its name

The Cure The Cure

maybe one day it will hear us

 
If my future hypothetical grandchildren

were to roll their eyes at the thousandth telling

of The Cure story around the campfire

I’d die happy, for they’d only known a better world.

 

 

No Rules Poetry

On Advocacy

Life has been chaotic this year, and my own versions of advocacy have gone along for the up-and-down merry-go-round ride.  I still want to blog about the insulin access workshop from April.  Yes, April.  (Insert disclosure that Lilly paid for my travel, hotel, and meals).  There is so much to say and so little time to beat a figurative dead horse (which died from lack of insulin, in this figurative example).  Yet I will express it at some point, because 1) I promised our community that I would, and 2) I am still wowed by my peers and those with big hearts who are dedicated to improving life with diabetes; these big hearts come in all shapes and sizes in healthcare; the workshop reinforced that idea for me.

There have been other exciting opportunities, too, and the blog posts have been drafted and re-drafted in my head for a long time now.  I believe mentioning these feelings here is advocacy in and of itself.  Sometimes this part of the merry-go-round of life simply is what it is.  Advocacy can wax and wane and broaden and refocus as life dictates.

Reading and watching and writing poetry have encompassed a different avenue of creative expression for me.  Poetry is freedom.  Just go.  It’s funny where and when the roots of an English major choose to spring up.  I’m just happy to be writing in some capacity.

At a recent event with close friends and their families, one ventured to ask about diabetes advocacy.  To respect privacy in this story, let’s call her Friend.  Friend’s relative (let’s call her Relative) has dealt with type 1 diabetes for a large number of years.  Diabetes remains difficult despite the gadgets and gizmos of 2017; I cannot imagine how tough it was way back in the day.  Relative has faced her fair share of adversity in this life.

Friend’s daughter (let’s call her Daughter) explained, “Ally does a lot of diabetes advocacy work, and it’s really cool.”  That statement shocked me back to reality, in a good way.  Someone out there, aside from #DOC folks, actually cares about this!  

I mean, I know people care. But it was refreshing to hear this outside of #DOC-land. There are people who look to our examples of advocacy and find hope. How humbling and, indeed, cool.

Friend was visibly excited to talk to me, and, likewise, I was inspired by her openness and respect for our community.  Another round of drinks later, and there we still stood, steadfast in our shared mission.

“Why isn’t there a cure yet?” reverberated in our ears.

I have asked myself, God, and anyone who will listen that very question in the long 26 years since my type 1 diabetes diagnosis.  To have someone else inquire the same of me was a long time coming.  Not that anyone is to blame, per se.  We all want a better world, one in which diabetes is buried with the dinosaur fossils.

But truly, why isn’t there a cure?  We have the brain power.  We have the amazing labs working steadfastly to help us.  We see the faces of loved ones who represent why #weneedacure.  My two cents are that we remain fragmented in an already-divisive society.  We need to rally together and maintain hope that one day a cure will come.  We are good eggs with sometimes-different goals, and that is okay.  But our goals should center on paving the way for a better world- whether with diabetes, or (hopefully) without it.  My response to Friend was something along those lines.

“Why are people dying because insulin is not affordable and accessible- not just abroad, but here in the United States, too?”

We discussed the name Shane Patrick Boyle.  Keep saying his name.  We talked about how diabetes advocacy is moving the dial on this issue, but we cannot rest yet.  This disease is absolutely relentless.  We have to keep showing that.

Friend and I left the event table knowing that we both still had seats at it.  There is work to be done.  Engagement in advocacy is fluid; such is life.  But sometimes it takes seeing the other people affected by our work to know that we are advocating beyond ourselves.  That is why we started this in the first place, and that is ultimately how we will finish it- together.

Thank you to Friend, Daughter, and Relative for reminding me why we do what we do, and for your loving support.

 

 

My Dog, Skip, Probably Has Better Healthcare Than You

My beloved Guinea pig, Reese, came home from the pet store with the rodent version of “kennel cough.”  We have been frequent fliers at the Vet as a result of this.  Thankfully, our Vet’s office is a fun place to visit.

When I call to book appointments, the service is prompt and the availability accommodates my work schedule.  When we arrive at the front desk, we are greeted with a warm welcome.  There is not palpable tension in the waiting room. Rather, a few smiles are exchanged amongst the visiting patrons.  Reese’s “white coat” anxiety is soon put at ease by the kindhearted Vet technician who spoils her favorite Guinea pig.

The Veterinarian’s examinations are thorough and careful to keep Reese as calm and comfortable as possible.  The Vet never rushes me through my laundry list of talking points saved in my phone, similar to my notes for my own healthcare appointments.  Instead, she actively listens and even expresses gratefulness that I have done my homework when it comes to raising a Guinea pig.

The cost of care is reasonable given the attentiveness and the results.  I do not cry at the pick-up counter of the pharmacy, as I am not sticker-shocked, vulnerable, or frustrated.  The pharmacist even adds extra banana flavor to make Reese’s medicine-taking process a little more bearable.

I received an email asking if I would like to sign up for an electronic health record (EHR) website, which will be personalized with Reese’s pertinent health information, photo, and Vet appointment schedule.  Although I am on the fence as to how necessary it may be to exchange all of that personal information considering that we will (hopefully) only make annual check-up appointments, I so appreciate that the Vet EHR is a possibility for Reese if and when we want it.  I cannot always say the same for my own human care.

^ The happy face of a creature who has easy access to empathetic care, and her own health information.

Whenever I visit a famous diabetes clinic affiliated with an even-more-famous Ivy League university medical center, the norm has become that it takes approximately six weeks to receive my lab results after the appointment.  While I have bemoaned this publicly on Twitter, I do not do so simply to hear myself talk.  This is not a unique situation to my healthcare experience, this clinic, nor other humans in the American healthcare system.  The plague runs rampant.  But is there really any excuse for it to keep spreading?

I am of the opinion that if said clinic’s nurse has poked the vein in my arm to draw blood, if I have lost my dignity by peeing in a cup and then holding it up to the light to squint– praying that somehow whatever is in that cup will be as okay as healthy-looking-urine can be!–, then I have earned the right to access my own medical information in a timely, effective fashion.  It is my data.  Who, what, when, where, why, and how I share it should be up to me, in an ideal world.

When said clinic advertises its new and improved EHR for years, only to continue solely updating occasional appointment reminders while the highly-acclaimed EHR remains devoid of labs and notes, something’s gotta give.  If this is happening in the “Mecca of healthcare,” where the biggest and the best EHR companies and universities spread their wings, how on earth can we expect the continuum of care and the quality that we know we are capable of achieving to improve healthcare?

This is not anyone’s fault in particular.  We have a healthcare system that remains convoluted and disjointed, no matter which political party attempts to restructure it.  We must ensure the utmost privacy while simultaneously allowing data to be useful and accessible- not an easy feat by any means, especially with hundreds of entities vying for this business.

My healthcare provider’s ultimate responsibility is to care for her patients.  If we are asking her to become an IT wizard on the side, we are asking her to make sacrifices elsewhere; ultimately, those sacrifices will come in the form of time lost treating patients with a high-quality level of care, which is contrary to what any good doctor stands for.

On the administrative side, more training needs to occur to ensure a smooth transition of care and patient data.  There will always be bumps in the technological road, but we cannot overlook commonsense.  For example, when a patient has blood drawn, either mail the labs shortly thereafter (in and of itself an archaic method of communication considering privacy and efficiency), or, use the #$%^*&@ patient portal to the best of its ability- to provide patients with the information they need to be informed and engaged in their health condition management.  Contrary to what the insurance industry may imply, we cannot scapegoat outcomes on patients and providers since we only provide rusty tools in their toolboxes.

“THESE ARE MY KIDNEYS!  I want to know- good or bad!” I dramatically proclaimed to my doctor when I finally got fed up enough to send an email requesting overdue lab results, circumventing the clinic and going directly to a source who cares enough to help. (Everything is fine, but it’s the principle of the matter.  If things were not fine, we want to proactively take action as soon as possible.  Lab results that are MIA for 6 weeks are a missed opportunity to intervene, and if we add up the totality of those missed opportunities and multiply it by the totality of the patients affected and the totality of the healthcare providers and admin. executives unnecessarily getting burnt out because we make this process unnecessarily harder than it was ever intended to be, well, you get the picture!!!)

My doctor answered my email pleas late at night on her day off, showing me she wants to make this situation with the clinic better for her patients.  She gets it, agreeing wholeheartedly that we need quick access to my health information in order to form the best game plan for treatment.  Much like Reese’s Vet, she listened and allowed me to express everything that I needed to.

The only way things are going to get better is if we continue to voice these issues and work together.  I believe strongly that clinics should hire firsthand patient consultants to come in and advise.  They offer expertise that cannot be seen without the lived experience, and their hearts are in the right place to make improvements for everyone who will come after them.  Many have professional and graduate level education experience in the healthcare field, further enhancing their value to this discussion.

Such constructive feedback can be a path that makes all healthcare players happy.  Costs may decline, quality may increase, outcomes may be better, human beings may spend more time living and less time surviving– and all from simple tweaks that do not require much investment aside from simply listening to those who are fighting for their health every day, and being open to changing accordingly.

Hey, humans!  Let’s get on the same wavelength as veterinary care, in which we hone in on empathy, communication, topnotch organization in our administrative duties, and a healthcare team that works together with living, breathing creatures of all backgrounds.  So, what do you say?

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Docto Interview

Many thanks to Docto for our fun interview, which can be found here.  I enjoyed learning more about the Docto app, which uses algorithms to predict blood glucose levels an hour in advance (docto.me)!  I believe there is great potential with this app not only in terms of physical health outcomes, but also in easing the emotional concerns that go hand-in-hand with diabetes.

Having detailed knowledge as to where my blood sugar might be headed an hour from now would allow me to make more informed insulin dosing decisions.  It would also mitigate my anxiety in that the unknown, sometimes-scary diabetes stuff will become known before it even happens.  Docto literally makes the unpredictable more predictable, which is music to my ears from a holistic diabetes management perspective.

Docto did not ask me to write this blog post, but I want to say it:  I am impressed with Docto’s dedication to making diabetes management better for our community, as well as their genuine interest in learning more about the diabetes experience from those who live it firsthand.  Our interview renewed my hope that the diabetes burden will become lighter for all of us in the future thanks to healthcare innovation and teams like Docto.  I encourage readers to visit docto.me to learn more.

Ah-Ha!

Video of our 2016 Stanford Medicine X panel, Ah-Ha! moments in mental health and chronic disease management, can be viewed here.  The panel speaks for itself; it was brave to participate; it was brave to be a member of the live audience- at Stanford and/or online; it is brave to watch the video; it is brave to reflect on mental health and chronic disease management.

Many thanks to Charlie, Danielle, Sarah, Mark, and so many others in the MedX family for making our 2016 panel such an empowering and enlightening experience for so many.

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Photo credit: Stanford MedX Flickr

 

Featured image photo credit: Mark Freeman