Being a Diabetes Medical Supply Hoarder
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.
When 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 continuous glucose monitor (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 safe. My doctor would prescribe two to three times more supplies than I needed. Before the CGM, I would check about eight to ten 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 three boxes of pump supplies every month, I would get four or five. This applied to things like my inhaler and other medications as well.
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 prescribed 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 been exactly within the determined timeframes. For example, if it was even one day earlier than three 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/type 1 diabetes (T1D) advocator.