Being a Diabetes Medical Supply Hoarder

6/21/16
WRITTEN BY: Mindy Bartleson
FacebookTwitterEmail
 

My name is Mindy Bartleson and I’m a self-diagnosed (former) diabetes supply hoarder. (I’m not using this term in a joking manner either.) I would like to note “former because I’m finally at a point where I don’t feel the need to hoard supplies now because I have switched health insurance. But it wasn’t always this way.

For a long time, I was in survival mode; I never felt secure in terms of my health and access to supplies.

mindy_bartleson_3When I was diagnosed with Type 1 diabetes at age 7, I was lucky to have good health insurance. All that changed though when my dad passed away when I was 12. Before his passing, a lot was done to make sure I at least had health insurance, because at that time, having a pre-existing condition meant that I basically wasn’t eligible for insurance on my own. (I was very aware of this at a young age.)

Because the health insurance I had barely covered what they considered to be “the essentials,” it was a struggle to get anything else covered, so I applied to get assistance through Children’s Medical Services. This helped with copays, meeting deductibles, a pump, a CGM, getting enough supplies, and with other appointments that my insurance didn’t cover. But that ended when I was 21, and what a shock (not really) that there weren’t a ton of resources for the 20-something right out of college.

With the help of my doctor and friends who would give me left over supplies or refer me to assistance programs, I hoarded to feel safeMy doctor would prescribe 2-3 times more supplies than I needed. Before the CGM, I would check about 8-10 times per day, but my script would say 12-16. If my daily insulin total was 30-50, my script would say 60 or more. I ordered extra boxes of supplies. So instead of getting 3 boxes of pump supplies every month, I would get 4 or 5. This applied to things like my inhaler and other medications as well. 

Hoarding diabetes supplies looks like three Tupperware containers full of insulin in your fridge. It’s a set of three drawers filled with diabetes supplies that you have to slam shut. It’s keep a detailed record of the last time you ordered and how much. It’s making sure expiration dates are easy to read. It’s keeping a book you call “the book of shit” to keep track of everything that happens with insurance and pharmacies. 
I did not feel confident that I would be able to have access to the supplies I needed, because I would mysteriously get “dropped” from my insurance for whatever reason they had or I would get “lost” in the system. I never knew when it would happen or how long it would take to get resolved, if it ever did. Having insulin isn’t “optional” for me — but they sure seemed to think so — and I was terrified of not having any or any test strips.

I would have to jump through hoops to prove that I was eligible for health insurance — even after the Affordable Care Act happened. They would treat me like I didn’t know any better — that I would lose health insurance at whatever time they decided that day. Whenever I talked with my insurance company or their assigned pharmacy, I felt like I was always being disrespected and treated like sub-human.

My costs were high for prescriptions and care and everything in between. I also didn’t really know what my costs would be when I was perscribed something — it was never consistent and knowing up front wasn’t really an option. Mental health and eye exams were barely covered. I had limited choices on the healthcare providers I could choose from as well. My appointments had be exactly within the determined timeframes. For example, if it was even 1 day earlier than 3 months (the allotted time between visits) for an appointment with my endo, they wouldn’t pay for it.

I’d been in survival mode for so long regarding insurance and access to vital supplies, that when I switched my insurance provider to Harvard Pilgrim with my job at the CDN and found that they actually covered things, something in me broke. I cried (tears of joy).

When I found out how much my pump and CGM supplies cost and that they were affordable, I cried. When I found that I could go back to my preferred meter and insulin, I cried. That I didn’t have to justify and fight for everything like how much insulin I needed or how many test strips I needed. When the pharmacy I used treated me like a human and didn’t make everything difficult to obtain, I felt a huge wave of relief. But when I realized that I no longer had to hoard (that doesn’t mean I won’t have backup) like I did before, that was when I felt truly free(r). I was actually able to combine several storage drawers of medical supplies into one set of drawers.

Now that I don’t have to use my energy advocating for myself all the time, I’m ready to advocate for others. Advocacy is something you have to do on a regular basis if you have Type 1 diabetes — but it is almost every day if you aren’t well off. I don’t think people realize this.

It hurts my heart and fuels my passion to help others when I hear of people that are still in survival mode because they can’t get access to supplies. This shouldn’t be an added stress in diabetes management. But the reality is that it is. People are still fighting this same battle — well if they have the time, energy and resources.

Now that I’m not in survival mode, I am hopeful to redirect my energy to helping others; I am hopeful for change. Once a diabetes medical supply hoarder, I’m now a diabetes trouble maker/T1D advocator.


This story was originally published on Mindy’s blog. Read The CDN Changed my Life by Mindy Bartleson and The Cost of Staying Alive by Charity Shuster-Gormley.



Mindy Bartleson

Mindy is the Communications and Partnerships Coordinator at the College Diabetes Network (CDN) in Boston, MA, and is a former CDN Chapter Leader. She graduated Cum Laude from the University of Georgia with a Bachelor’s in Social Work and a minor in Sociology. She was diagnosed with Type 1 diabetes on March 8, 2000 when she was 7, and she has been involved in the Diabetes Community since then. She thoroughly enjoys diabetes camp, travel, crafts, reading and being awkward. She blogs about life, diabetes, mental health, and women's health on her blog, There's More to the Story. You can follow her on Twitter and Instagram @mindy_bartleson as well as on Facebook.