Help me define this

#1

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.)

5 Likes
#2

I failed to conjure a concise and catchy term yet, but the process you describe reminds me of a rat forced to run through a maze designed and built by others.

1 Like
#3

I think thats a good metaphor.

Its kinda like how they built ramps for wheel chairs. Except, for diabetics, they build brick walls with razor wire at the top that we need to climb over.

2 Likes
#4

I do believe that insurance companies and pharmacy benefit managers know that even simple hurdles added to a process will eliminate x% of claims. If you’re forced to call your doctor’s office to make sure that they’ve responded to a pharmacy request for a PA or “prior authorization,” a certain percentage of people will not get that done.

I see the PA as an artificial and intentional hurdle placed in the process to diminish the number of claims and keep more money in the insurance company’s pocket. These kinds of policies should be illegal.

The only people who benefit from the PA are all the medical assistants hired to satisfy that non-value-added policy. The patients and doctors are both irritated by this artificial and contrived device.

3 Likes
#5

So are the pharmacists. I went to pick up a 90 day supply of Humalog vials this weekend. I was given a 30 day supply instead. I asked why and the pharmacist said the rx benefit company said that it was due to a high copay ($18/30 day supply). If I didn’t know the pharmacist as well as I do, I’d have called BS.

Having a chronic health condition that requires frequent doctor visits, lab work, supplies and medications seems like we are all Sisyphus from Greek mythology.

2 Likes
#6

Like sisyphus…

4 Likes
#7

I like the Sisyphus reference, @lumi73. At the risk of seeming pedantic, I’ve copied this short description from Wikipedia for those unfamiliar with this myth.

In Greek mythology Sisyphus or Sisyphos (/ˈsɪsɪfəs/; Ancient Greek: Σίσυφος Sísuphos ) was the king of Ephyra (now known as Corinth). He was punished for his self-aggrandizing craftiness and deceitfulness by being forced to roll an immense boulder up a hill only for it to roll down when it nears the top, repeating this action for eternity. Through the classical influence on modern culture, tasks that are both laborious and futile are therefore described as Sisyphean (/ˌsɪsɪˈfiːən/).[2]

Unfortunately, we who struggle with the pharma-industrial complex, I don’t think we have earned this Sisyphus role due to our “self-aggandizing craftiness and deceitfulness.” Instead, I think that Big Pharma and their minions have earned the righteous punishment that Sisyphus received.

3 Likes
#8

I like Sisyphus, the boulder being diabetes and the hill is insurance. The boulder is bad enough, but there is the hill is doing all it can to make it impossible. I have UHC and it is more akin to the Himalayas.

Thank you for this post, I could not agree more. It is discrimination. I am diabetic, I do not have a choice.

1 Like
#9

And probably the actual pharmacists and techs as well, since they are almost certainly on the receiving end of the “you know I need this medication or I’m going to die, right? WHY IS THIS SO HARD?” rants that are both completely understandable and inevitable.

I constantly try to keep in mind that the pharmacy is not the home of my enemy, but there are many days where that doesn’t feel true. On those days, I have to do some serious mental re-orienteering to keep my fear and wrath focused on the insurance agencies and their political cronies. Cause they are trying to kill me, I’m pretty sure. I even have that fancy, expensive private insurance through an employer (that many people do NOT have) and they’re still certainly out to get me.

4 Likes
#10

Does this mean your pharmacist thought they were refusing to fill the 90 day scrip in order to capitalize on three co-pays, or did they mean there was some other co-pay thing going on? I find the whole system to be unbelievably confusing and utterly opaque. I really have no idea how much insulin and other medications cost to make, how much the markup is at three or four stops on the way to the consumer, and how much I should be paying at the register.

1 Like
#11

Ok, three posts in a row lol… not my intention, but it’s just the way it’s worked out. I can name the type of discrimination, even though it’s going to be (understandably) controversial to the online diabetes community.

Those with chronic illnesses that run into these constant hurdles are running into:

Disability Discrimination

also known as “ableism” or “anapirism.” This is slightly controversial, because many of us with diabetes do not want to be labeled as disabled or having a medical disability. Legally, however, those of us who have a diabetes diagnosis are considered to have a protected disability under the ADA (as an amendment). The kind of bureaucratic nonsense that both annoys and sometimes kills us when seeking medical care for acute or chronic conditions is absolutely discrimination against the disabled.

Unfortunately, it is to the financial benefit of companies we rely on for our lives and livelihoods to squeeze every last drop of cash they can from us or let us die (since we’re expensive to the American system). And even more unfortunately, it’s in the interest of those companies to pay for political support, which has enabled them to make decisions on everything from pricing to “Pre-authorizations” to denying claims which have a terrible cost on diabetics.

4 Likes
#12

@David49
I dont know if you have read this, but I think it would interest you. Someone posted on Tu, I think, some time ago. http://main.diabetes.org/dorg/PDFs/Advocacy/forecast-stories/2009-05-defeating-discrimination.pdf

2 Likes
#13

I’m sorry those of you in the US have to put up with this type of nonsense in addition to massively inflated healthcare costs. I’m not sure your system could become much more dysfunctional for people who interact with it in any way (patients, doctors, pharmacists…it sounds like everyone is suffering).

5 Likes
#14

It’s maddening. I am sure it was on the rx benefit management side, the pharmacist said she tried running it for 90, 60, and then 30 days. Only the 30 day fill was approved despite the script being written for 90 days. Likely because it’s punishment as I refuse to have my insulin shipped via mail order-it’s always a drama regardless of the shipper used because I live in the 'hood.

2 Likes
#15

Yeah, I have 90 day scrips and a pharmacy plan that is supposed to do “90 days by delivery or at approved pharmacy.” My scrips are written for 90 days, and they still only fill them for 30. I think the only way to get them to honor that (in my case at least) is to actually do the at-home delivery.

I don’t live in the 'hood, but I do live in the freaking boonies. So while they don’t like shipping to your place, they don’t like shipping to mine either. IF they did ship (and leave) medications on my doorstep, I imagine we’d have some really dead coyotes and racoons since they eat anything anyone leaves on my doorstep ;/

2 Likes
#16

hehehe, @David49, next time I loose my insulin, I’m going to tell them raccoons ate it. I 100% believe that mice stole my transmitter. They also stole a candy bar that I set down for only a minute. It was recovered, but rendered inedible. I was furious.

This is my new theory for failures - Raccoons and coyotes (obviously employed by the insurance companies) are sent to eat up all mail order prescriptions, insurance clauses, transmitters and snacks left unattended, 90 day prescriptions, DMV forms, and piles of money. This theory will be called “The coons & coyotes phenomenon.”

Thanks for reminding me that your out there, @Jen. I forget that there’s a whole world out there where things might not be like this. Its strange to think about. I don’t think I would feel ‘disabled’ in the same way if it wasn’t for the healthcare environment. Do you think we have a different relationship with our illness because we all sorta feel like there are these unknown forces trying to kill us…I mean, in additional to the normal diabetes ones. Maybe you all are more healthy than us (mentally).

3 Likes
#17

Out here in the (interior) PNW, this theory is pretty well-supported by empirical evidence. So far, the coons and coyotes have definitely taken:

  • two of my cats
  • several bags of trash my wife left on the stoop for me to take to the dump
  • several bags of trash and recycling my wife left in the back of my pickemup truck
  • a sourdough boule I baked for my mom
  • a bowl of my kid’s cheerios from the back yard while he had his back turned
  • an Amazon package with some Bob’s Red Mill goodness (think it was rye berries)

We’ve caught a couple of young raccoons in no-kill traps, but the older ones are way too smart for that. The coyotes sing outside every night, mocking us, but generally leave us alone (although my farm dogs are terrified of them and they got my cats).

I would have no doubts about them messing with my prescriptions and threatening pharmacists with “consequences” if they actually filled a 90 day scrip for a single copay.

1 Like
#18

hahahaha. They have invaded and are occupying the countries of Japan and Germany. There’s nothing they wont do.

#19

@mohe0001 “I don’t think I would feel ‘disabled’ in the same way if it wasn’t for the healthcare environment. Do you think we have a different relationship with our illness because we all sorta feel like there are these unknown forces trying to kill us…I mean, in additional to the normal diabetes ones. Maybe you all are more healthy than us (mentally).”

This is definitely a real thing!

I just graduated high school. There’s a law that before you go on a school bus for a field trip you have to go to the nurses office and test your blood sugar. My school was weird and we had pretty frequent field trips.

I am not okay with testing my blood sugar for non medical reasons. Especially as I was required to do it because I might not be safe on the school bus, but we left early in the morning and after a meal my blood sugars change a lot so the reading wouldn’t even be representative of what my blood sugar was on the trip.

When I brought up how much constantly having to make myself bleed for a non medical reason upsets me, I was snarkily told there was nothing I could do about it. I spent a whole summer upset about how these nurses who barley knew me were allowed to make decisions about the health issue I had managed for years without ever being hospitalized. But when I brought it up with my endo she easily added to my school orders that I didn’t have to retest, just check in and tell them what my blood sugar was at breakfast. I didn’t want to be singled out and have everyone annoyed with me because I was making us leave late at all, but this was the compromise.

Now I’m in college. My last A1c was .1 above my goal which my doc was thrilled about for my first semester managing my diabetes by myself. I spend a lot less time crying and feeling like I’m doomed because of my immune system. I barley even worry about my diabetes anymore and I’m still getting great results even though it’s actually so much harder to manage my blood sugars in college. The only difference is I don’t have some random person constantly infringing on my decisions and pulling me out of classes to remind me I have a disability even though my blood sugars are fine and they just had some paper work they have to do to cover their butts.

3 Likes
#20

That’s a reasonable thing to be mad about, @Brodie1.

I’m not sure how we change things we don’t like. I, honestly, never found an opportunity to do that until I was in graduate school (25 years of diabetes). Even then, it might not work. But, its always worth a try because those opportunities don’t pop up very often. When you see them, you gotta act. Damn, it feels good to do that. https://www.youtube.com/watch?v=6IJCFc_qkHw

PS. Nobody listens to you in high school or your undergrad. But, in graduate school they want to know what you think about things and you have more influence. Store up those stories and experiences. They have value down the road. Even of nobody listen now, they will later.

2 Likes