Mask Emoji Collage

N95. Surgical mask over it. Mess up your hair. Pull the straps tightly behind your ears. Imprinted lines cross your cheeks. Stay home. Receive the Eucharist in a Church parking lot. Talk to others, but only outdoors or through a blue light screen. Your mic’s not on. Post-viral illness. Healthcare burnout. Lonely. Tired. Scared. Informed. Public health. Empathy. Ambivalence. Fatigue. Vaccines. Airborne. Waste water. Ventilation. Filtration. Purification. Capitalism. Germs on your hands and in your lungs. Cognitive decline. Cognitive dissonance. Vascular effects. Long Covid. Humanity. Can we endure another 1000 (2.5) years?

The masks should’ve been the easy part.

T1D in the COVID-19 Era

Throwing together some advocacy discussion fodder more publicly here, as requested:

There have been reports of type 1 diabetes onset status post COVID-19 infection, as well as diabetic ketoacidosis (DKA) and insulin resistance being related threats when it comes to COVID-19 treatment. While I’d be remiss not to mention the main grad school 101 lesson, “Correlation doesn’t equal causation,” (meaning that we do not know for sure that COVID-19 may or may not cause or complicate diabetes yet), we can still take commonsensical precautions in the interim to prevent further possible suffering. I will be the first to admit that I’m not going to do your homework for you here and link to various articles and tweet threads on these topics; they’re out there if interested, and I’m writing this blog as a highly-generalized, well-intentioned commentary with the disclaimer that we do not have all of the answers yet and the advice here is shared in an abundance of caution and transparent discourse.

We need more research data and more analyses of these theories, plain and simple. ‘Awareness’ is often a diluted catch phrase in healthcare advocacy, but in this instance, knowing what may happen – while we iron out the scientific facts of the matter – could possibly save lives and quality of lives. For these reasons, I don’t think relaying the message hurts us, with the understanding that more research must occur.

The prevalent theory on the cause of type 1 diabetes (T1D), an autoimmune condition, is that the perfect storm of factors – viral trigger, genetic predisposition, and environment (often stressor-related)- culminates in a diagnosis- that is if one survives the common DKA at onset and is swiftly treated with insulin. Time is of the essence, life or death, here.

Theoretically, COVID-19 plays into this theory perfectly, being the viral trigger that gets the ball rolling in some cases of T1D, with the person’s immune system having been sent into overdrive by the infection. Healthcare professionals have reported that COVID-19 does not play well with pancreatic function, often requiring highly elevated basal insulin rates and thwarting DKA in the process of treating COVID. None of this sounds remotely fun and should be impetus to us all to do our part to protect ourselves and others.

If you’ve contracted COVID-19 recently, in my humble opinion it is wise to be aware of the warning signs of type 1 diabetes given a qualitatively potential risk post-Covid-infection. There are fancy posters and awareness campaigns which display this information in a prettier way than this blog post, but for what it’s worth, the main symptoms of T1D which I advise others to watch for are the following, among others:

Extreme thirst

Frequent urination

Fruity breath / odor

Blurry vision

Significant weight loss

Ketones may present a heartburn-like sensation.

If any of these symptoms are present, contact a healthcare professional (HCP) / emergency room immediately, and demand to be tested for T1D. If HCPs are downplaying the odds, and if you can afford this option, purchase a blood glucose meter and test strips, or urine ketone strips, over the counter at your local pharmacy and check on your own. If results are elevated, this bolsters your point that you need to be seen immediately regarding a possible diabetes diagnosis.

The anecdotal evidence is quite strong that we may face an influx of diabetes in the era of COVID-19. We might as well start talking about it.

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.

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?

April as a List

I find us at the conclusion of yet another month, and perhaps my hopes to get back into blogging more frequently have lapsed or feel too self-centered, as evidenced by this last minute post for April.  The hectic pace of work, life, healthcare appointments, advocacy, and, a pandemic!!!, have certainly taken up my time lately.  But I do miss this space, and connecting with you regularly. I hope that you are staying well during all of the chaos in the world right now.

My main superficial, positive takeaways from self-imposed quarantine:

  • There are never enough books to read! But reading voraciously again is a nice perk.
  • The show, Power, on Starz is totally binge-worthy.
  • Reconnecting with friends and family via phone calls or emails
  • Long, quiet walks

 

Superficial Cons:

  • I understand the need for telehealth, but it is just not my thing.  I can’t wait to get back to in-person care once it is safe to do so.
  • Iced coffee at the drive-thru was a bigger part of my life than I realized!
  • Too much pressure to Zoom!

 

To be continued in the future, as health/safety/time permit:

  • Much-needed vacation with friends this summer / fall
  • Perhaps more blog appearances
  • Coffee dates!

 

How about you?  Stay well!