advocacy

A Historic Moment for Advocacy

I’m usually skeptical of good diabetes news (still waiting on that cure, by the way), but Lilly’s recent announcement on reducing insulin prices is a mind-boggling moment in patient advocacy. Surely, there is still much work to be done for truly equitable insulin access to become a reality for all. Yet, Lilly’s move (later followed by Novo Nordisk and Sanofi) is a step most of us never foresaw without federal regulation forcing pharmaceutical companies’ hands. (Without regulation, notably Pharma companies could raise list prices if they so choose). Understandably, all of this recent news doesn’t bring back what and who our community has lost along the way to this historic moment. As we move forward, we should always remember their stories and how our community got to the here and now.

From an advocacy lens, this moment speaks volumes as to the collective power of online health communities. Too often patients are dismissed by conscious and unconscious biases in healthcare. Yet I am inspired by so many in our community who have never backed down on demanding a better world for all people with diabetes. Their persistence is why insulin is in the spotlight, mentioned often in politics for better or for worse. They undoubtedly moved the dial here, and the world is better because of their relentless determination. Thank you to those of you who led the way. This one goes down in my forever record books of why advocacy is worth it.

Advertisement

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

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.

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

  • 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.

 

img_9179

 

 

 

 

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.

 

 

Coffee Date #2: Elizabeth Rowley and T1International

Elizabeth Rowley, Founder and Director of T1International, joins Very Light, No Sugar for the second interview in the Coffee Dates series. I encourage readers to visit the links included by Elizabeth and to help the #Insulin4All movement however you can.

 

A:  What led you to develop T1International?

E:  In short, I recognized how privileged I was to grow up in a place with access to good medical care and the supplies I needed to live a healthy life. I could not – and I still cannot – understand why health is not treated like a human right for everyone around the world.

As I learned more about what people with type 1 diabetes face in all parts of the globe, I wanted to address the problems by working with people most affected. I could not find any other groups tackling the issues through advocacy, so I thought T1International could bring the diabetes community together to ensure that no one dies because they cannot access or afford something as basic as insulin or test strips.

 

A:  T1International’s current campaign of #Insulin4All has been making lots of good noise on social media. What is one simple, immediate way for individuals to help out the cause?

E:  Sign our Access Charter and spread the word. It takes two minutes to sign and shout about this on social media. Signing will not only show that you support five basic rights for all people with diabetes, but it will also add to the growing list of individuals and organisations who support these rights worldwide.

Advocates around the world will use this charter and the signatures as evidence for the growing global support behind the #insulin4all movement. It will allow advocates for type 1 diabetes to prove to the government that there is international support and pressure for sufficient access to insulin, diabetes supplies, care, education and protection for everyone with diabetes.

 

A:  There is a persistent call for transparency in the insulin access and affordability realm. Ideally, what would this transparency look like?

E:  In one sense, transparency would mean that pharmaceutical companies would no longer be allowed to raise or set prices for their products without true justification. The excuse that research and development is the main reason for high prices is not cutting it anymore. Insulin pricing is currently a mystery. Costs vary wildly around the world, and even within a single country. Simply being able to know the cost of production and the true list price that companies set for a drug like insulin would be a huge step forward in transparency.

Transparency is also important when it comes to patient advocacy organisations. It is important for all of us to think about how much potential there is to be influenced or ‘bought’ by industry. A recent USA study found that 67% of a sample of patient advocacy organizations (virtually all of which were not for profit) said that they received funding from for-profit companies. Relationships between patient organisations and industry can influence their actions “in ways that might not align with the interests of the constituencies they represent.” The same article notes evidence that financial relationships can create bias in areas like medical research, so non-profits and patient organisations are subject to the same concerns.  [Susannah L. Rose, PhD; Janelle Highland, MA; Matthew T. Karafa, PhD; et al]

Many diabetes organisations take money from pharmaceutical or device companies specifically. No one wants to compromise their income, but there is concern that orgs taking industry funding are keeping quieter than they would if their funding came from other sources. At the very least, organisations can be more transparent about where their funding comes from by having a clear declarations webpage that is obvious to visitors. We hope groups will consider that continually accepting funding from pharma companies often “creates a routine awareness among sponsored groups that one doesn’t bite the hand that feeds it.”  [Ray Moynihan, PhD; Lisa Bero, PhD]

 

A:  We have discussed the great power of personalizing the insulin story. Give us one brief narrative of how T1International’s work directly influences the life of someone with diabetes.

E:  It is literally the difference between life and death. It is also the difference between feeling alone and knowing you have a community rallying behind you. Salomey and [her] mother in Ghana had to sell most of their belongings to be able to afford Salomey’s insulin – they were running out of options. With support from a local group (Diabetes Youth Care) and T1International, Salomey was able to get the supplies and support she needed. She finished high school in 2015 and she is working to ensure she can purchase the supplies on her own. T1International continues to work with Salomey and other Diabetes Youth Care advocates in Ghana on a larger scale, advocating for #insulin4all so that Salomey’s story will be replicated many times over.

 

A:  Where do you see T1International’s work going in future years?

E:  All of our work moving forward will support our strategic plan, which focuses on four different areas including:

  1. raising awareness of the global lack of access and affordability of diabetes
  2. connecting and collaborating with groups around the world to provide resources and outreach
  3. pushing for better data and resources about global type 1 diabetes
  4. campaigning and advocacy advocating for systemic change

More specifically, in the near future we plan to carry out online advocacy trainings focused on the content from our advocacy toolkit. We would like to hold open sessions for advocates to come together to talk about best practice, share ideas, and talk strategy related to the specific issues they want to tackle locally or globally. Further afield, we would like to do larger, in-person training sessions with groups around the world. In the meantime, we won’t stay quiet about the need for transparency and #insulin4all!

 

A:  Is there a specific geographical area that is high on the priority list for insulin access assistance in 2017?

E:  It is impossible to prioritise one country over another when so many people are still dying from type 1 diabetes in so many countries. We would like to see more data collected, perhaps through establishing diabetes registries, in Africa as a whole. There needs to be more government prioritisation of access to medicines in nearly every country, which is why we are committed to supporting people and communities worldwide.

 

A:  Favorite beverage?

E:  Flat white  🙂

Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.

img_9395

This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  

 

 

 

Chocolate and Nightmare Visit Boston

I recently had the honor of accompanying my Stanford Medicine X (#MedX) bestie, Danielle Edges, and her young daughter, Alex, on their visit to Children’s Hospital Boston for a heart catheter procedure. Alex has a congenital heart disease called heterotaxy, additionally complicated by liver and spine issues. Danielle’s honest perspective on her family’s life with CHD can be found on her blog, Life is hard. Wear a Helmet. Adventures in Life. With Danielle’s permission, I am sharing my take on her family’s bravery here.

 

I joined the Edges at their hotel room because Alex’s heart cath had been postponed a few hours. Danielle and Alex had endured many tiring hours of travel across the country two days earlier. The good news about the delay in the procedure was that I got to hang out with them for a few hours away from the beeping of hospital machines and the drowsiness of anesthesia. The bad news was that Alex could not eat before the heart cath, so adding an extra few hours to that timeline was understandably not ideal.
Alex, Danielle, and Ally selfie

MedX and MedX’er-in-training selfie.

 

Alex’s lively spirit was contagious despite being hungry, however. Danielle and I are both known to say what we mean as healthcare advocates, which is probably why we click so well. I saw Danielle’s energy and wit in Alex, who is well-versed in medical lingo after many hospital stays in the past. (We totally have a future MedX’er-in-training!)

We tried to distract from the hunger pangs by coloring birds in a coloring book, or playing with Alex’s new stuffed puppy toy that the Fairy MedX Godmother, Ally, brought along for the hospital stay.
Alex- present

“I love my present.” -Alex.  (Complete with Chocolate, the puppy, picture).

 

“What is that? I want one!” Alex proclaimed, pointing to my Dexcom receiver.

We discussed how we were similar in some ways, as Alex has a medical device connected to her as well- a G-tube to help her get the proper amount of nutrients each day. Her blood sugar can also dip low due to her liver condition, and who doesn’t like a communal grumble about hypoglycemia?!

Soon it was time to head over to the hospital. The air was frigidly cold on our short walk there. This was my first time stepping foot in Children’s despite decades of treatment nearby at the Joslin Diabetes Center and having family and friends who have received lifesaving care at BCH. Simply walking through the main entryway is a moving experience; there are families from all over the world, children with conditions both very visible and very invisible, all there to seek topnotch medical care at the best children’s hospital.

We were taken to a hospital bed for the preparations prior to the heart cath. A kind nurse gently informed Alex that she would need IV fluids. The nurse spoke directly with Alex, not at her. Alex was treated like the informed member of the healthcare team that she is, even at only eight years old.

Another nurse came in and the IV insertion was done before we even blinked. Kids tell it like it is, especially complex-medical kids whose perspectives are better than most. So, Alex looked right at the nurse and said “Ow,” and then immediately went back to watching TV stoically while Danielle and I chatted.

The nurses were so impressed with her courage that they rewarded Alex with a dark brown and black beanie baby puppy to complement Chocolate, the larger brown and white puppy.

“What is the new puppy’s name?” the nurse asked.

Alex had just been poked with a large needle. She was ravenous and about to undergo a difficult medical procedure.

“Nightmare,” she aptly replied.

From the mouths of babes, as they say. I will never forget the humor and irony in that moment for as long as I live.
Alex in hospital1

Rocking out with Chocolate and Nightmare.

 

Shortly thereafter, a nurse anesthetist administered medication to prep Alex for the heart cath, and it was time for her to be wheeled into the surgical room. As Alex dozed off, Danielle whispered that she loved her, and Alex whispered back, “I love you, too.”

In these moments, Danielle had to be strong not only for herself, but for her medically-complex child, as well as her daughter and husband back home. She is truly SuperMom, as evidenced by the poise she and Alex exhibited throughout the long day at the heart center.

I, on the other hand, do not always handle hospitals so well. We had not eaten much over the course of the busy day, and suddenly everything hit me all at once. The doctors came to the waiting room to speak to Danielle while Alex was in recovery. Danielle can explain the details far better than I can; please see her blog post here. In layman’s terms, there was good news peppered with difficult news.

We then proceeded back to Alex’s room. A nurse was with us as Alex slowly roused from the heavy sedation. This same nurse called Danielle with updates every hour while Alex’s heart cath went on, proving once again why Children’s Hospital gets every detail right. As I watched this little girl arising from such a long fight, my head suddenly started to spin. The room was hot, and my Dexcom indicated a fairly fast blood sugar drop.

I alerted Danielle and the nurse, who brought me some water and this adorable tiny carton of orange juice just in case I needed it.
OJ

OJ for the diabetes win.

 

Half of a granola bar consumed later, and I had recovered just as quickly as the dizzy spell had appeared.

“Diabetes is so… constant,” Danielle remarked afterwards.

“Yes, but so is all of this,” I replied, glancing around at the machines in Alex’s room.

Our respective diseases can act up in the exact moments when we wish they would behave; but the understanding and support that we have gained through our friendships at MedX and through ePatient communities have made those moments less scary. That much was articulated by those two sentences exchanged between myself and Danielle, an unspoken understanding and respect bridging the gap between health conditions.

As the evening progressed and Alex was moved to a new room for overnight observation, it was time for me to head back to Rhode Island. Danielle’s night was just beginning, though. There would be more IVs, chest xrays, and medications to be delivered, and this Mom would be by her daughter’s side through it all. We hugged and parted ways, knowing that we would see each other soon.

 

*****

To simply state that the Edges family is inspiring does not do justice to their story. I can best describe their strength by detailing a tiny moment in the grand scheme of the heart catheter day.

While we waited for Alex to be called in for the procedure, Danielle and I conversed in our signature animated dialogue, talking about hopes and dreams for healthcare, how much we missed our MedX friends and could not wait to be reunited, and more. Alex was quiet and focused on the cartoons playing in her room. She had an IV in her hand and was about to receive sedation medication before having an investigatory procedure performed- and, later, some intervention procedures- in the hopes of improving her quality of life. This was big stuff for a little kid.

I heard soft noises in the background as Danielle and I spoke, and I at first thought that Alex was crying or whimpering in nervousness before being taken away from Mommy. But then I listened more closely.

Alex was not crying. She was humming.

This child was about to have dye injected into her heart, to have coils installed to curtail pulmonary AVMs, to lie on a stiff operating table that would anger her scoliosis, to be in pain.

Yet despite it all, she was still happy.

She was humming.

 

 

To help get the #EdgesToBoston this summer, please see here.