I think I want to define a new type of “discrimination.”
The healthcare system is so complex, and insulin dependent diabetics are a relatively small proportion of the population who have a lot of interaction with it. Therefore, there are a bunch of catch-22’s and road blocks (sometimes in the business logic and sometimes in the computer system) that cause the system to fail.
Sometimes I feel like I spend all my time trying to resolve these issues.
For instance, if the pharmacy accidentally creates two accounts under my name and some of the Rx are in one account, and some are in the other. Without knowing that defect, it makes it very difficult for me to buy insulin and I end up needing a new Rx from the Doc almost every time I buy it.
Then, there are the familiar insurance company hang ups where they restrict how much insulin you can have and how much food you can eat. We all know about that one. Then, there are mis-billings by the insurance company and policy changes that come all the time, causing all my standard procedures to be thrown askew.
You all know that there are many more…
The complexity and high rate of failure in a system such as this causes too much burden on my life and makes it prohibitively difficult for me to do things that I want to do with my life.
They have built me a cage and all I can do is rattle my cup on the bars. Can somebody name this type of discrimination - Where you are forced to spend all your time just ensuring that things are in order so that you can conduct normal activities? Its a cage made out of paperwork and broken computer systems. I am currently calling it the “Paperwork cage,” but that makes it sound kinda benign. When things go wrong, I might spend 20-30 hours a week trying to set it right. That’s as much time as some people spend at work. It is not benign. Does this only happen to me?
Sometimes I dont even have the option to sleep at night because the paperwork cage is reeling its ugly head and I need to spend all night giving myself microdoses of crap insulin as a substitute for basal. System complexity makes everything so brittle. Its no surprise that newly diagnosed diabetics die. I have been doing this for 20 years, and commonly see new problems that I have never seen before.
Another diabetic has asked me to mention this hang up,“I think it makes a big difference, since employer can switch to different provider if too many complaints from employees. Several times I let my employer HR person resolve issues regarding RX and medical claims problems. However, in a few months I will be switching to marketplace exchange, and fear it will get much harder to get supplies and resolve issues.” (I’ve, personally, never had the guts to change insurance policies. Had the same one my whole life.)