Several things have happened recently that have reminded me how important it is for Diabetes Care and Education Specialists to also be advocates. Not just by contacting our state and national officials about important topics like making insulin affordable, but also by making sure each and every patient gets what they need to take care of themselves appropriately.
I have type 1 diabetes and the insulin my insurance prefers makes me itch from head to toe so I have a prior authorization to get a different brand of insulin. However, because it is considered "not covered" on the formulary I have to meet my deductible before my insurance will pay anything toward my insulin. So in January I had to pay over $600 for 2 vials of insulin. Thankfully I have a flex spending account so I was able to go ahead and pay for it and pick it up. I also ordered pump supplies and sensors that month so in one month I met my deductible and since my monthly co-pay for my 2 vials of insulin is $95 which is still a lot of money.
In May my siblings and I received a text message from our mom (who lives over 2000 miles away from me) stating she was in the hospital and her blood glucose was very high. When I was able to talk to her she told me that the doctors had said that even though she was on insulin now, she would probably be coming off of it at some point. At that point alarms bells started going off in my brain. Although my mom is 68 years old she is 5'7" tall and weighs 150 pounds. She is extremely physically active doing all of her own yard work on over an acre of land, hiking in Yellowstone National Park, etc. She also has a family history of a brother, nephew, and daughter (me), all with type 1 diabetes. I sent her a text with the names of the antibody tests and told her to ask them to run those tests. Thankfully they did because her GAD-65 was high and her C-peptide was low indicating that although she is 68, this is really type 1 diabetes that we're dealing with.
The next obstacle is that my mom never signed up for Part D Medicare because at that time she took one $5 blood pressure medication and didn't feel she needed it. So she went to the pharmacy to get 1 vial each of a basal insulin and a rapid acting insulin and was told it would be $603 at which point she said she still had some of the samples from the hospital and would have to get back to them. Between her retirement income and her social security she makes too much money to qualify for any of the patient assistance programs. We did get her a good rx card, but even with that the basal insulin was still around $200. Luckily right now her doses are very small and her doctor has been able to give her samples to keep her going until open enrollment time.
The endocrinologist and his team have been great with making sure she has samples and getting her a CGM (she was having hypoglycemia unawareness) and are already working on getting her a pump, but I can't imagine what would have happened if she had been misdiagnosed or didn't have me and her team there working with her.
All of this just brought home how important it is for us to work on trying to make insulin and diabetes supplies affordable for our patients and how we really have to pay attention to each patient and make sure that they are getting what they need and nothing is slipping through the cracks.
I thank all of you for all of the time and effort you put in to helping people with diabetes here in NC and also to the team that has been helping my mom in ID. Keep up the great work, but don't forget to take action when those advocacy alerts come out and to make sure you do everything you can for each of your patients.