The Role of Privilege in Advocacy - Reflections from the Indianapolis T1International Vigil

Monday morning I sit at my kitchen table. The reservoir indicator on my insulin pump blinks "LOW," warning me to change my site. As I go through the motions of changing my pod, I hesitate. I've drawn up the last of my vial of insulin, and I need more. I open the clean, white refrigerator in my parents' kitchen and pull out another bottle. I flick off the plastic cap and draw more out. The weight of my privilege settles over me like a heavy blanket.

I've just returned from Indianapolis, where T1International held their 3rd annual vigil and protest outside of Eli Lilly Headquarters. While there I had the honor of meeting families who have lost their loved ones due to insulin rationing. The majority of these people were parents who have lost their children - many of them ages 18-26, a now-dangerous age for people living with T1D in the United States.

I arrived to the hotel where most of the T1International Chapter Leaders and families were staying anxious and excited. I had never participated in a protest before, and this was something I felt incredibly passionate about. At the same time, I carried around a feeling of guilt. Guilt that I have a job I love, that also happens to have great health insurance that I am able to afford, with manageable co-pays for my diabetes supplies. Surrounded by families who had lost their loved ones to price-gouging and a greed-fueled healthcare system, it struck me how unfair this all was.

What gives some people the right to life over others? Nothing.

At the vigil, we heard families tell their stories. Stories of how their loved ones were found dead, and how they had wasted away from the lack of medicine that they needed to live. It was difficult to hear. As a privileged type 1 diabetic, it is often easy to forget how closely death lurks behind our shoulders. As many of the signs held up at our vigil shared, this could happen to any of us. We are all one bad day away from falling into a dangerous place.

Eli Lilly is one of three powerhouse insulin manufacturers, along with Novo Nordisk and Sanofi. They are often referred to as "The Big Three," as they control almost all of the insulin market worldwide. Insurance companies, pharmacy benefit managers (PBMs) and the American healthcare system play a huge role in this crisis as well. Research has shown that roughly 1 in 4 people with type 1 diabetes in the USA ration their insulin due to cost - a higher rate than any other high income country surveyed (T1International, 2018).

So as I sit at my kitchen table, filling my pump with the insulin that I can't live without and have so readily available, I feel a number of things. I feel relieved. I feel angry. I feel mystified.

One thing I have learned about privilege is that it must be acknowledged, but it goes further than that. Acknowledgement is no good if you then spend your time wallowing, feeling guilty. It's what you do with that privilege that matters. I have my health, and I have a voice. These are privileges that I will use on behalf of those who lack that privilege.

On Display

People live with diabetes in many different ways.

Some of us are unashamed of our medical devices, and flaunt them every chance we get. Others are more private; keeping devices hidden as much as possible, or even choosing not to use certain devices in order to avoid making diabetes more visible. Most of us fall somewhere in the middle.

The other day I was speaking with my mom about letting my devices show. During our talk I realized how multi-faceted the decision is. I explained to her that I'm not embarrassed for my devices to show. I don't particularly care what other people think. But some days, it's 80 degrees and I just want to run to the store in my tank top without anyone speaking to me.

This seems fair, right? Sometimes we want to be left alone, especially if we're shy or introverted. And even if we're not, sometimes we don't always want to get into a discussion with a stranger about such a personal part of our lives. That's what's unique about diabetes. It is so insidious that you often don't think twice about it, but when someone you don't know brings it up it can feel uncomfortable.

Take going to the beach. If you have a pump or a CGM, it's highly likely that one of these will be on display when you don a bathing suit. And some days, I just want to tan and go swimming. I don't want to talk about diabetes and explain why I'm having that snack. You can be comfortable in your skin, but still not want to be approached. You can be proud of your medical devices, but still want others to respect your privacy.

You can be a loud advocate, but have your days that you just want to just be.

Which begs the question - is this decision wholly on us? I don't think it is. I think that when we decide to let our medical devices show, we're hopeful that the general population will decide to be tactful. That they are kind in their questioning, if they feel the need to question, and that they're receptive to what we have to say.

How To Attend a Meet-up as an Introvert

Contrary to popular belief, introverts don't relish spending the majority of their time in the dim light of their bedroom, hissing at fellow human beings should they dare to intrude.

....Much like extroverts don't enjoy spending every waking minute of their lives at raging parties. This is a generalization about these two often referred-to categories of people that we simply tend to make. In reality, what differentiates an introvert from an extrovert is how they re-charge their batteries. So, as an introvert you may enjoy spending time with others, but in smaller doses. You feel re-energized after cozying up with a good book after a social event. On the other hand, an extrovert will seek out others to socialize with to re-charge. Susan Cain does a much more in-depth exploration of this in her book Quiet: The Power of Introverts in a World That Can't Stop Talking.

In today's world, much of our support from other T1Ds comes from online, often from people we've never met. There we are able to connect with others, and often organize monthly or weekly in-person meet-ups - think support groups, but less formal and with more quality food involved.

I remember my first meet-up. I attended alone, and it was in Manhattan. I was nervous. I anticipated this; I'm an introvert myself. I also anticipated that by the middle of the meet-up and then walking home afterwards, I would feel happy. Reflecting on the night, I would smile and enthusiastically tell my family about the people I met. So I'm here to tell you that yes, you can attend a meet-up as an introvert. Here are my tips:

Rest Up

Remember that whole thing about what gives you energy? Even though the meet-up can be a fun and pleasant experience, for an introvert it can still be draining! So you'll want to show up with a fully charged battery. That means spending the day doing what brings you peace - reading, exercising, taking a nap, etc.

Do Your Research

Fear of the unknown makes everything worse. Know where you're going, how you're getting there, and how you're getting home. Most meet-ups will post their location and information about the hosts, so you can get a feel for the vibe with a little research on your end.

Don't Feel Bad About Leaving at a Reasonable Hour

Attending a nighttime meetup but not a night owl? That's fine! Go, enjoy yourself, and leave when you feel it's time. Don't beat yourself up if some people are going out for drinks afterwards and you don't have the energy to join. You still took a huge step - you put yourself out of your comfort zone. Celebrate what you have done, instead of comparing yourself to what others have done.

Find a Buddy

If you're still feeling nervous, make a plan to connect with one person. Whether it's online before the event, or when you arrive. There's power in numbers. And the odds are, the more comfortable you get and the more you settle in, the better you'll feel about branching out.

What exactly IS self care?

Living in the age of social media means that we're exposed to many fleeting trends, buzz words and health crazes - some of them more legit than others. One of the terms you've probably heard by now is "self-care." Maybe you've shrugged this off as another wellness fad, or maybe (more commonly) you've been thinking sounds great, but who has time for that? 

More than just a fad

Self-care is a real thing, guys. My primary exposure to this phenomenon has been through the world of social work and diabetes. But whether you're a social working diabetic or not, you still need self-care. Everyone needs self-care. Yes, even you Mom.

Self-care is particularly important for those who are prone to burnout - caregivers, people with chronic illness, mental health/medical providers, and first responders. Ironically enough, these tend to be the people who have the least amount of time for it. But fear not. You may surprised at how simple implementing self-care can be.

How do I self care?

First of all, check in with your priorities. Where are you on the list? After your spouse, kids, job, diabetes? The lower you are on your own priority list, the more urgent your need for self-care is.

Second, self-care doesn't have to be a huge undertaking. It doesn't have to be a lifestyle change, or a big interruption to your life. Self-care can take as little as 5 minutes of your day. Some tiny self-care examples:

• List (on paper or in your head) 5 things you're grateful for
• Watch a funny video
• Pet an animal
• Write in a journal before bed
• Stretch

See? Not so bad. Self-care is basically anything non-harmful to you or anyone else that releases those feel-good endorphins, or lessens our load of tension. For people with diabetes, it could mean taking a break from our CGM. It could be taking a break from Instagram, or unfollowing someone whose posts you keep comparing your BGs to.

It may seem like a silly indulgence, but remember - if you're not taking care of you, you eventually won't be able to take care of anyone or anything else.

Staying Sane with Your CGM

You may be reading the title of this blog and thinking it's contradictory.

I need my CGM to stay sane, you mumble to yourself. What is this girl getting on about?

First of all, if you're on a CGM and don't get obsessive with your data, kudos. If you don't let the steady stream of numbers wear on your self-perception and sanity, I'm impressed. I'm also skeptical. Because how could we not become obsessive? The data is always there. At any given moment, we can see what's going on with our blood sugar trends and levels. As someone who's lived for over 20 years without this insight, I must say it's like finally being given the gift of sight.

So if you think you're not over-dependent on your CGM, ask yourself these questions just to check where you're at:

• Can you eat a meal/go to the bathroom/go on a date without having your phone or your receiver by your side?
• Do you catch yourself having a knee-jerk reaction to up or down arrows, and then going high or low due to over-correcting?
• Do you have a significant increase in worry during the warm-up period when you start a new sensor and you don't have access to continuous readings?

I can tell you personally that since starting CGM use, at least one of these has always been a "yes" for me. And that's okay - the CGM is a great tool and we should use the data. But sometimes the constant checking and over-correcting can do more harm than good.

So, to keep myself sane, these are some hacks I've implemented:

• Turn off the "Quick Glance" feature. Quick glance can be a blessing and a curse. It's super helpful for things like work and driving. However, during downtime it's easy to tap your phone awake every 30 seconds to check the BG that's fixed to your screen. I take little vacations from quick glance and usually notice a healthy decrease in how often I check my phone. 

• Use your receiver at night. By now you've probably heard about the impact technology can have on restful sleep. If not, here's the quick & dirty: the closer to bedtime your screen time is, the more interference in getting good Zs. Most experts say to power down an hour before bed. So what I've started doing is powering on that little receiver that many of us have long forgotten, and keeping it on my bedside table. This way I can check my number if needed without getting roped in by Facebook notifications and text messages.

• Set parameters for yourself. Significant change can often come from small steps, if you follow them faithfully and make room for them to become habit. Setting firm, specific rules for yourself can be helpful. For example, "checking my phone less" is too vague; whereas "checking my phone every 1 mile during my run (thanks John from Type One Run Podcast for this tip)" will likely yield more success.

When I'm feeling particularly frazzled by my sugars and staring at the little dots on my Dexcom graph, waiting impatiently for the next one to appear, I remind myself this: there were not always CGMs. There was a time (a long time) where we ate, tested, gave insulin, and let Jesus take the wheel. We tested again when we were symptomatic or eating again. It's possible to survive without the CGM. We can stand to not know our blood sugars every 5 minutes. This re-framing and self-talk helps me work myself out of a data frenzy. Use the CGM tool as a shield, not a sword that you keep falling on.

Back to my Roots

I grew up at summer camp.

More specifically, at diabetes camp.

So when I officially registered for Beyond Type 1 x Connected in Motion's 2019 Maine Slipstream weekend, I was more than a little excited. I mean, this was the stuff of (my) life. Camp is in my blood. And now to go back as an adult, doing adult things (AKA drinking wine, higher rope courses, etc.)? I was extremely privileged to have this opportunity.

Maine did not disappoint. Seven hours and seven states north, my diabuddies and I pulled off the interstate and into the quaint town of Winslow. After about ten minutes, we approached a sign, almost masked by the leafy trees, that read "Camp Caribou." We had arrived. The camp was nestled at the end of a long dirt road, on the edge of large lake. It was abundant with all the camp necessities - volleyball court, waterfront, dusty wooden cabins and, of course, campers!

Over 80 adults living with type 1 diabetes, along with staff living with it as well, attended Slipstream. I felt a rush of nostalgia as we unpacked our bunks, did awkward icebreakers, and had a nighttime bonfire. It was so nice to be able to have an open and honest discussion about living with type 1. About its ups and downs, and about the responsibilities that come with being an adult with this disease. I was amazed to hear the different walks of life people came from - some had been living with type 1 for less than a year, while others had spent over 40 years with it. People came from out of town, out of state, and even out of country! I nestled into my cot that night smelling of bug spray with a smile on my face.

The next day was full of opportunities to play outside. I climbed a 50 ft wall at high ropes, did some paddle boarding, and played a spontaneous game of volleyball with my fellow campers. Throughout the day, sessions were held exploring everything from mindfulness to technology, all with a focus on type 1, and led by people living with it. 

I was lucky enough to grow up attending camp for kids with type 1. It was so nice to see other people who had never had this experience before have it for the first time. Listening to their awe about being surrounded by other people with diabetes was touching.

So what do you pack for a weekend at camp?

Bug Spray.

Seriously. You're gonna need it. Spray it outside the cabin. And even though you use it, you'll still leave with bug bites.

Layers.

Maine is COLD compared to NJ. I regret not packing a second sweatshirt. Bottom line, pack a variety of layers. And always pack extra underwear.

Warm Pajamas.

No matter where you are, in the woods it's cold in the morning and at night. Grab some pajama pants and fuzzy socks. And an extra blanket.

An Extra Pair of Shoes.

Ya know, just in case you get thrown in the lake. Or fall in.

Another angry blog post about insurance

...Because what else is new, right?

But seriously, what I want to vent about is insurance deciding what is or isn't medically necessary. Let's break this down: 

You go to your physician, who attended upwards of 8 years of schooling to become a MD. They evaluate you, hopefully take your input as a patient, form a medical opinion and a plan of care, write a prescription or two and send you on your way. You go to your pharmacy to pickup your medication, only to find that your insurance company has denied coverage of this prescription. They feel it is not medically necessary, or they have a "preferred alternative" that they do cover.

This is something we've unfortunately all grown used to. But let's just pause a moment. And let that sink in.

First of all, preferred by who? Not by me, the person who's going to be ingesting/injecting/applying the medication. Not by my doctor, who prescribed medication in the first place. But I mean, what value are our measly preferences in this situation, right?

Second of all, our insurance company is determining what our medical needs are. So what, then, is the point of seeing a physician in the first place? Why not just go directly to the insurance company and seek their medical opinion? Oh, that's right. Because they're not physicians.

To play devil's advocate, doctors are employed by insurance companies to conduct clinical reviews of prescriptions. However, are these doctors the most appropriate people to be doing this review? In short, no. When my Fiasp was up for review to determine what level of coverage it would receive, the review was conducted by a PhD. No shade to PhD's, but if someone's reviewing my insulin needs, I think it should be, maybe, I don't know, an endocrinologist? Perhaps my endocrinologist? One who isn't employed by a company that profits from denying coverage of the medication I'm seeking? I mean, we are literally asking people to make a determination that will either harm their own company, or harm us. And they've never met us. Which way are they more likely to go? Does conflict of interest not play a role here?

It's a very backwards system, to say the least. We go to doctors to get appropriate care. But then we're met with roadblocks to actually receive that care. For people with chronic illness, dealing with this for a lifetime is draining and aggravating. We should explore a system that makes it easier for people to live their best, most healthy lifestyle. An ounce of prevention is worth a pound of cure. If we keep people healthy, we avoid future hospitalizations and prolonged illnesses. And in turn, avoid future expenses our insurance will have to cover. So what is the end game for them? Are they just stuck in that phase of childhood development in which they have no ability to engage in delayed gratification?

End rant.

(For now).

Community Versus Identity

The other night I was snuggled up at home, catching up on the latest episode of The Good Doctor. I was drawn in to a particular sub-plot of the episode. One of the main characters, who is receiving chemo, finds himself being pestered by his neighbor in the treatment room to join their cancer support group. Long story short, the character resists for the whole episode, arguing that he doesn't want cancer to define his life, it's not who he is, he doesn't need a support group, all that jazz. In the end, he comes around, and joins his chemo neighbors for a game of cards. 

Throughout the course of this, I couldn't help but think about how many times I've heard this dialogue before - whether it's about diabetes or any other chronic illness. People don't want to be defined by their condition (understandably so). Because of this, it's common for people to push away when approached with support groups or communities for people who share their diagnoses. We want to be more than our diagnoses, so we don't want to over-identify with it.

But here's the thing - there's a difference between identity and community. Belonging to a community of type 1 diabetics doesn't mean that you yourself are only diabetes and nothing else. Your identity is still yours. Sure, diabetes and the community are a part of your identity, but they are not the whole thing.

We can't always change what we're living with. We can't make diabetes go away. So why not find solace in the fact that there are others out there who share our struggle? You may find that they don't like to over-identify with their disease either. You may not even talk about diabetes when you're together. But having that support system there undoubtedly inserts a positive aspect into living with a disease that you cannot change.

Where is the love?

Healthcare has been a hot button issue lately here in the states. Of course for those of us who live with a chronic illness, it has always been an issue. But with the 2016 election, healthcare along with many other public policies have come to the forefront of the nationwide conversation. And frankly, the conversations have been quite alarming.

There is an overwhelming population of people who believe that healthcare has to be earned. That the right to live is not an inherent right for all humans (even though our US Constitution specifically states otherwise). People feel that if you work hard, pay your dues, and play by the rules, you will A: Stay healthy, and B: Be granted great insurance coverage, God forbid anything should happen to you. This logic is flawed. Chronic and/or acute health issues can happen to anyone, at anytime, for a variety of reasons. As a species, humans don't like to believe this. It creates what's called "cognitive dissonance," which is when we are presented with a reality that doesn't match up with what we've always believed. It therefore causes dissonance, or disruption, so we do everything in our power to ignore the reality and continue on with our faulty beliefs. We cannot reconcile reality with our wishes because it causes discomfort.

Most people grow up hoping or believing that they will have good health. This is normal - it's a positive outlook on life. However, as we grow older we tend to experience certain realities - maybe we're diagnosed with type 1 diabetes, someone we love is in an accident, our parent gets laid off and we almost lose our insurance - and we are able to shift our beliefs accordingly to read more like this: things may not always be easy. Things could happen to us and our family. But for some people, this adjustment doesn't happen. They continue to believe that bad things come to those who deserve it and that healthcare should be earned.

So is the issue that people are inherently bad and have complete disregard for others? I hope not. No, what I think is happening in the majority of cases is that people are simply rigid in their beliefs due to concerns about their own self-preservation. And this needs to change. We need to challenge our beliefs because they are flawed. Yes, it is a frightening reality to accept - that we could be struck with an illness or hit by a car at any time. But we are doing more harm than good by holding on to the flawed belief that we are in total and complete control of our health or our circumstances. It is not reality.

The reality is, every human has an inherent right to live. And for some humans, what they need to live - and live well - is a bit more extensive than what others need. So I challenge you all - what belief do you cling to that begrudges others their inherent rights? How can you start to chip away at that belief and re-frame it?

Using Anger as a Tool - The Global Insulin Crisis

Being a social worker means I'm rarely surprised by anything. We are often witness to every kind of  bizarre and disturbing occurrence out there. We work in the medical field and see people struggle with a complicated healthcare system while trying to care for themselves or their children. But every news story that blasts through the screen about another diabetic dying from insulin rationing hits me like a punch in the gut.

Insulin prices have been slowly climbing over the past decade. It's a reality that seems to have been kept under wraps - except, of course, from the patients and families who have been struggling in silence each year their copay goes up. As someone who's been privileged enough to not have this issue constantly weighing on me, I could easily turn a blind eye to it. Mutter "yeah, that's a shame," and go about my everyday life. I'll be frank - this path is tempting. This is a beast  of an issue that has numerous parties involved, and differs from nation to nation. In a recent New York Times article regarding insulin prices, Danielle Ofri wrote, "It's hard to know where to direct my rage." And it is. It's overwhelming. Where do we begin? The only answer I can formulate is this: we start with raising our voices. And this has already started: with numerous articles like Ofri's, protest trips to Mexico to exhibit pricing differences, TV news features, and type 1 advocates blasting pharmaceutical companies on social media. Now that the fire is catching, we have no choice but to roll with it.

To be clear, insulin prices are an issue everywhere - not just in the USA. While insulin in Mexico may be affordable for us, it is not the case for most residents of the country. Insulin prices looked at as a percentage of income paints a better picture of the bleak reality. Aside from countries like Canada and England who have universal healthcare, insulin prices are unmanageable for most populations. The cost of living with diabetes takes up the bulk of individuals' or families' income, leaving people scrambling for rent, food, and other necessities.

Info-graphic created by T1International

While coming up with the money is the initial struggle for most, an issue that is specific to the US is the ability to then get your hands on insulin. You need a prescription. You need that prescription submitted. Maybe it gets denied. Then it needs pre-authorization. Then it gets approved, but you have a bigger co-pay than expected. Then you have to download a co-pay card (if you qualify). And then you can pick up your insulin. This process can take days at best, weeks at worst. And contrary to what many people may think, not everyone has the time to be battling on the phone with insurance and refereeing between the doctor, insurance, pharmacy and pharmacy benefit managers (PBM). We do have lives outside of diabetes.

This issue isn't specific to insulin, either. The price of test strips are exorbitant. They are considered a luxury in many 3rd world countries. Even here, some insurance companies (mine included) only cover enough strips for 3 tests a day. To get coverage for more, a letter of medical necessity is needed. In what world does someone with type 1 only need to test 3 times  a day? It's clear that insurance regulations don't seem to be based on diabetes care best practices recommended by physicians.

As I said, it's a beast of an issue. And it angers me. A lot. Instead of sitting on that anger or turning a blind eye, I decided to get involved. Becoming an advocate for T1International is step one for me. T1International is a non-profit that takes no donations from pharma companies and advocates for people all over the world to have access to the medications and education they need.

Enough of suffering through this issue in silence. We're demanding change. We're not waiting. We want #insulin4all, and we want steps to be taken towards it starting now. If you want to get involved, check out T1International, search the hashtag #insulin4all on social media, and check out what other diabadasses have been doing below.

• Libby Russell at I Have the Sugars is selling statement tees to benefit T1International.
• Robin Cressman raises her voice and led a group of type 1s across the border to purchase insulin in Mexico to protest accessibility and pricing issues.