We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Asha Brown, founder of We Are Diabetes gives her thoughts and comments about access by sharing her story.
I’ve been a human pincushion (aka type one diabetic) since I was five years old. The sight of needles and blood is such a common theme in my life that sometimes it’s shocking to see a non-diabetic person get so uneasy when they see me plunge a syringe into my torso to give my body the synthetic hormone insulin, which keeps me alive. Being entirely responsible for manually preventing yourself from dying each day is a lot to ask of a person. There’s a lot to calculate and plan. No matter how adept a type one diabetic is at knowing their insulin to carb ratio, how their body responds to exercise and stress etc., there are always factors outside of our control that spiral our diabetes management out of control. Day in and day out we do the very best we can to manage a disease that tries to kill us, and try to find stability despite a long list of factors that constantly keep us out of balance.Getting the supplies that we need to STAY ALIVE should not be one of the factors on that list.Over the 26 years I’ve lived with type one diabetes (and other autoimmune diseases I was diagnosed with as a result of T1D) the most stressful factor I’ve had to continuously deal with is my insurance denying or restricting medications that are essential to my diabetes management.
Insurance Denying Access
Most recently I had to fight to have my 24 hour insulin distributed to me in the proper amounts. My insurance wanted me to make one bottle last for 3 months. There are a number of reasons why this was a ridiculous restriction:
- Insulin loses its effectiveness/expires once the bottle has been open for 30 days
- I need more 24 hour insulin to KEEP ME ALIVE than is included in one bottle.
- The USA is not a third world country rationing toilet paper and reusing tinfoil due to a shortage of everything that exists. There’s plenty of Lantus to go around. I spent hours on the phone for over a week before this issue was rectified and I was “allowed” to have the very necessary 3 bottles of insulin I need to last me for 90 days.
I have been through four different situations of medications being denied, year after year. Every time this happens I go through the appeals process, and I get my doctors support with all the proper paperwork, and eventually get my medication. The amount of superfluous hoops I am forced to jump through just to get the medications I need causes unbelievable (and unnecessary) stress for me, on top of the stress of living with a demanding life long chronic illness. I didn't get a choice in being diagnosed with type one diabetes, but I should be allowed to have the choice of how I manage it.
If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.