Patient Advocacy in a COVID-19 World

A prominent pharmacy chain recently contacted me regarding an upcoming COVID-19 vaccine appointment. The only problem was that I did not personally book said appointment… My antennae were raised upon being instructed to click a link and provide all of my personally-identifiable-information (PII). (No, thanks!)

Upon further inspection, this was all legitimate correspondence from the pharmacy, however poorly expressed. After a phone conversation, Pharmacy informed me that they were automatically booking vaccine appointments for folks who were not showing as having been vaccinated per the Pharmacy’s vaccine records, alone.

I get it. The delta variant poses damage we cannot even begin to fathom yet, and vaccines coupled with masking (for those who do not have genuine medical contraindications to these measures) are our best communal ways to fight back. Pharmacies have a vested (heavy emphasis on the dollar signs) interest in public health.

Yet, I could not stop thinking about this interaction from a patient advocacy perspective. For starters, this poses fraud and safety issues for those already vaccinated outside of the Pharmacy system. Health literacy is different for each of us. What if someone already vaccinated who, through no fault of their own, does not fully understand the vaccine process then becomes quadruply-vaccinated via these pre-booked Pharmacy appointments? What if a vaccine card is obtained at the Pharmacy, but the previously-vaxxed individual already had a card from the original vaccine site? Etc. This well-intentioned public health project needs better organization and communication to run smoothly. Involving patient advocates in the process would have been a good place to begin…

For what it’s worth, these simple steps could drastically improve Pharmacy’s outreach:

1) Make the appointment messages MUCH clearer. The current text is a sketchy-looking link that most people are not going to trust. The appointment is automatically booked by the Pharmacy on short notice without asking the individual about availability. (This is not a good look! As advocates, we know barriers to healthcare such as time off from work or child care will affect when people can receive vaccines. I would even argue the Pharmacy made their own work more difficult by automatically booking because so many will not be able to attend at the magical, preset date and time, and the Pharmacy consequently has to deal with numerous phone call questions!)

Communicate WHY this appointment is happening within the reminder message, i.e., “Our Pharmacy records, alone, indicate that you have not received the COVID-19 vaccine(s) within our Pharmacy system. To aid public health efforts, we have booked this appointment for you.”

2) Meet people where they’re at.

Make this an opt-in process at the point of purchase, such as the pharmacy counter. Educated pharmacists and pharmacy techs can explain why the vaccines are necessary. People will be more likely to say “yes” during in-person conversations, much like car sales events.

Pharmacy is being presumptuous by insinuating that people have not received the vaccines if not shown in the Pharmacy records. Instead of scapegoating, corporations should invest more in creating real world access opportunities. Perhaps there is a local town with a low vaccination rate? Host community events outdoors where members can easily witness firsthand that vaccines are safe and effective, and that others in the community are signing up for their shots then and there.

3) “But Ally, shouldn’t we have a nationwide, interconnected electronic health record (EHR) so that we can avoid some of these issues?”

I could write another long blog on this, but my personal short answer is, “Not interested!” I prefer to control my own data at each respective healthcare interaction. We know there are conscious and unconscious biases in healthcare, particularly for women and/or people of color, and often it is nice to start fresh with a new pair of healthcare provider eyes and a new EHR at certain appointments. I am happy that Pharmacy does not know more about my health than it already does, in this case. And it can be a slippery slope of giving up our access once that ball is rolling- COVID-19 or not.

Also, the idea of an interconnected nationwide EHR in the United States has floated around for decades now. As a simplified response to this, my bet is that it will never happen to the idyllic degree that some want it to; we are too selfish from a corporate, capitalistic sense to allow one big bad wolf to control all EHR content when we can have multiple packs tearing into the meal all at once.

4) To summarize, this seemingly small marketing campaign could have tenfold positive effects if Pharmacy had consulted directly with patient advocates (and paid them accordingly for their time and knowledge). We know what to look for and how to make healthcare better because we have lived it day in and day out for decades. We want improved quality of design (and quality of life) for all involved. And while we concede that we are living in bizarre times considering the pandemic, this is not an excuse to cut corners and rush. A few edits to the messaging could make a world of difference and help change the course of COVID-19.

On healthcare conference hashtags

This is not to say

‘There aren’t good eggs’

who care about people with diabetes

like you

like me

who recognize the humanity in us all

who dry the tears and wipe the blood

away

It is to say that ‘we’

the hashtag statistics

the numbers

the time in range

whatever that is

the semantics we are spoonfed

while poked and prodded relentlessly

CGM needles piercing the abdomen

lining the pockets of the yacht owners

‘This is us’

so-called specimens under the microscope

We

are still worthy

people

Banting and Best and all the rest

As I recently limped my way towards an endocrinology appointment post-foot-surgery (impending long blog story to follow when time permits), the two iconic names of Banting and Best jumped out from the wall of Joslin Diabetes Center, commemorating the 100th anniversary of the discovery of insulin in fashion.

My inner perfectionist was not a fan of the lighting of the photo below, as the bright Boston afternoon sun mingled with shadows across Joslin’s diabetes tribute wall. But then I realized that perhaps the most important words were highlighted after all, reminding us that the purpose in diabetes advocacy is to serve those touched by diabetes as best we can, to honor healing as a form of art.

And so the photo stands.

This bunny grazing nearby Longwood Avenue- otherwise known as the ‘nonstop sirens-filled hub of the best healthcare in the world’- was a peaceful reminder that life rolls on despite the noise.

Thank you to Banting and Best for giving so many of us the chance to enjoy life, 100 years later and counting. May we as a society find our way back to the selfless Banting and Best philosophy, and never stop fighting for equitable and fundamental rights to life, and quality of life, through accessible, affordable healthcare for everyone.

The Talk

Since I was a child, I have always known that something else was going on autoimmune-wise, concurrent with T1D. Randomly breaking out in hives, allergies, sensitivity to anything and everything depending on the day of the week, and so on, all muddled my experience. Type 1 diabetes, alone, is hard enough, yet we know there is often autoimmunity effect overlap in other areas.

I’ve moved mountains and scaled Everest over time to get more comfortable taking sufficient insulin- the hormone which sustains human life but can snuff it out quickly with one inadvertently “off” dose. I have learned how to sit with uncertainty, and that I can handle anything, including hypoglycemia. And yet, the physical results of this effort are often just not visible.

My greatest fear in diabetes has never been the complications, albeit undoubtedly a rough road to endure. Rather, most bothersome is the societal insinuation of “not trying hard enough,” of one day being the stereotypical diabetic friend / relative / etc. whose premature death / complications fate is erroneously rationalized away as lack of effort. Those ideas make it easier for the person assuming, because the emotions of the truth are that difficult to accept. I’d counter: Imagine living it day in and day out, for decades without one day off- not just the diabetes management aspects emotionally, physically, financially- but also having to sit with those harsh truths of knowing how most of the world sees us, and what our loved ones might hear in our wake one day.

I suppose this blog is partially to acknowledge it all, to save face a bit, to not have to explain one more time. I recently met with a doctor about some non-diabetes-related concerns. I begged for 30 seconds of her time so that I could explain: My blood sugar may not be high because of diabetes, alone; these symptoms may not be blood sugar-induced; rather, the other issues may be contributing to the insulin resistance! The words gushed forth, and to my surprise, the doctor nodded. “You’re probably onto something there. Let’s run these tests to investigate.”

Just like that- no judgment, taking my effort for what it’s always been- nonstop- despite the objective A1c results.

One far away day, if an acquaintance ever tries to put inaccurate words into my own diabetes story and I am not there to explain, I hope my family or friends can express exactly what needs to be learned: That diabetes (or other health conditions) are enormous work, and the individual always tries (even when from the outside it may not look like it, as there are so many psychosocial factors at play which cannot immediately be seen).

More importantly, I hope the recipient of the lesson sits with their own emotional discomfort, to be like my doctor- nodding, accepting that the difficulty must be painful for others, and being open to learning more.

We can’t change the ignorance surrounding diabetes overnight. But these small interactions move us closer to the legacy we deserve.

We have always tried.

30

This month I marked 30 years of living with type 1 diabetes. Collectively, my family has 55 years of experience with T1D between myself and my relative. In the past, I would have calculated and best-guesstimated the hundreds of thousands of needle pokes incurred over these diabetes years. So much of our time is spent analyzing numbers and trying to find meaning in it all.

My 30th diaversary, however, was mostly met with ambivalence on my part. When a friend texted me to be kind about this milestone of an anniversary, I replied succinctly, “Thanks. Honestly, today has just been another day. And I’m okay with that.”

This is not to say that I’m burnt out, or ungrateful, or anything else negative and patient-blaming which healthcare so often unjustly engages in. Rather, quite the opposite. I was ambivalent simply because my interests have shifted over time, and diabetes no longer takes up the bandwidth that it once did in my mind. I still struggle and suffer from the nonstop burden of diabetes management as complicated by many external barriers to care. But it’s more of a rolling with the punches experience now, rather than constantly lacing up my gloves for another round. There is peace to be found in the rhythm of acceptance, and moving towards what I value no matter what.

I also recognize the great juxtapositions here:

30 years of diabetes is a huge deal defining decades of strength and resilience. We should celebrate those achievements and express thankfulness for our supporters.

But we should also acknowledge that none of this is fair. The dial hasn’t moved on diabetes-land in the ways that we need for every person with diabetes, everywhere, to have good quality of life. We still need a cure. We still need better insulin treatments, and we absolutely need these options to be readily accessible and affordable for everyone. No more jumping through hoops; just commonsensical, “Can I quickly access what I need to live well even at 3:43 am in a snowstorm?” sort of standards of care. We’re unfortunately still far from these equitable meters of QoL.

It is not lost on me that many people do not get a chance to write a 30th diaversary blog post as they may have hoped. Factors such as missed or delayed diagnoses fueled by societal stigma and misunderstanding of diabetes; the inextricably intertwined challenges of emotional health and chronic disease; effects of socioeconomics, race, class, gender, education, environment, war or peace, and much more; and, most pressingly, global access to insulin / insulin pricing all weigh heavily on my heart today. Those who have died slowly and painfully from DKA, particularly, remind me that even though ambivalence at 30 years of surviving an unrelenting disease is acceptable, my own years cannot be in vain. My story could have begun and ended differently. Others were not so fortunate, and our advocacy must honor them.

Despite the daily challenges posed by diabetes, I am still here, through hard work, yes- but also through lots of luck and privilege. We are allowed to be cognizant of each of these contributors to diabetes care, to be proud and happy when we feel well and achieve our goals, while simultaneously mourning the support we lack personally and universally in our diabetes care trajectories.

I feel all of that today.

November 2020

And so concludes National Diabetes Awareness Month (NDAM) in the midst of a pandemic…

Staying home as COVID-19 rages on has given me much time to ponder the juxtaposition of how I used to feel about November in the early days of my own diabetes advocacy journey (rah! rah!), versus the ambivalence I feel lately. Perhaps the pandemic and our general societal burnout plays a role. Perhaps I’m just not as into diabetes advocacy anymore because it is not as new, and after almost 30 years of diabetes, I am sick of hearing about diabetes. But, mostly, it boils down to the very fine line we straddle during November: how we want others to learn more about the seriousness of diabetes, but we shouldn’t want anyone speaking on behalf of anyone else- whether the speaker has diabetes or not. I appreciate well-intentioned friends who want the world to be better for me and all people with diabetes. However, I never want November to be a pity party on my behalf. So this year, I didn’t say much.

The best advocacy I encountered this month was from diabetes families and individuals who have endured more than anyone should ever have to: rationing due to insulin pricing, premature complications and deaths, major life choices affected by the cruel burdens- financially, physically, emotionally- which diabetes constantly brings to the forefront, and much more. I wish none of these factors hurt us, but the reality is that these stories from the source are the most telling from November, or any other day in the life with diabetes. So, thank you to those who bravely advocated this month. You said it all far better than I could have, and during a life-altering pandemic, nonetheless. May your words reach those who especially need to hear them, and may more good change come for people with diabetes because of you.

6.

Very Light, No Sugar celebrated its sixth anniversary this September. Every year I am humbled to remember that this website has been read by people in more than 100 countries worldwide. Other aspects of life have taken up more of my time and energy in recent years, and I have certainly reduced my blogging frequency. I am slowly learning to accept that perhaps this is just how the tide rolls sometimes, yet I still cannot quite let this blog go completely.

I’ll be honest: I feel a bit out of the loop in terms of DOC stuff lately. Snippets on Twitter allude to the latest in DOC news or passionate talking points, and I sense the gist of the backstory but do not quite know it all more often than not. Again, that is okay. Now is others’ time to shine and my time to listen. But it is not an excuse to be complacent on my part when there are inequities in diabetes, and healthcare at large. We can definitely do better, and although I may not be as vocal as I once was, I am still rooting for the good eggs and a better world for all people with diabetes.

Thank you to those in our community who have become friends over the years, those who have been along for the full ride- the ups and downs of life akin to a wild Friday night Dexcom graph, and to those who care about improving our quality of life throughout it all. Here’s to many more years together.

Hugs,

Ally

Masks

If it is too much to wear a mask

for thirty-four seconds

in the peppers and carrots aisle,

Imagine what it feels like

to stab your abdomen

with a gigantic Dexcom CGM needle

every week or so,

Taping a foreign device on your body

through showers and swimming pools,

on your wedding day

donning a mask again at happy hour

To be privileged by virtue of the pain

we don’t discuss

The incessant buzzing in your ear

that something is almost always ‘wrong’

What if we were just kind enough

to care about it all

about each other

anyway?