Chronic Illness/Disability + Money


#1

I thought we could start a group journal/group thread about chronic illness and/or disability and money. If you’re interested in joining in, post here. You can share your story, ask questions about things like health insurance, disability insurance, or just rant about things related to chronic illness/disability and money.

My story: I have Rheumatoid Arthritis, which used to be really bad. All through college I had disability accommodations that meant I got a notetaker in class since my hands couldn’t hold a pen. After the ACA passed, I was finally able to get health insurance (due to pre-existing conditions/crappy jobs without insurance, I never before had the option) and after like 2 years of trying, we finally found the right drug that makes me 95% symptom free. I’m never going to like, do needlepoint, but I can hold a pen for maybe ~15 minutes now! I don’t usually fall asleep at random intervals from fatigue! Plus, my internal organs aren’t breaking down. Yay!

The drug I’m on is a bit scary because it’s $3000 a month, but that is mostly covered by co-pay assistance from the drug company. That means I hit my OOP max in March each year, and the rest of my health care is free. Yay! I’m generally terrified that the ACA will go away since I get my health insurance through the exchange, and I’m increasingly concerned that pharma co-pay assistance will get struck down by anti-trust laws (currently moving through the courts). Plus, you know, the lingering cancer risk of taking an immunosuppressant every week.

…so! Hi!


#2

If the copay assistance is struck down, I guess that doesn’t just mean you’ll hit your OOP max even sooner every year, because then you wouldn’t be worried. But there must be something about it I don’t understand. Do drug copays not count toward the OOP?


#3

Umm, yes, but I won’t be able to afford it very easily. My OOP max is $7,500 per year paid for 98% by co-pay assistance, and my drug costs $3,000 per month, which is about double my average monthly income. With notice, there’s things I will be able to do, like possibly shift to a more expensive Gold plan that’s not HDHP (therefore higher premium costs each month from my $284/month plan) that has a lower OOP max, and then save up all year in sinking funds for the first month or two of drugs. But I need notice! If the co-pay assistance program collapses, it will be so catastrophic to people using this class of drugs (biologicals) and chemo, that’s it’s likely something will have to be done at the policy level quickly though.


#4

And all that makes sense now. I hear “co-pay” and think of things like $20 for generics, $50 for the favorites list, $100 for everything else. Your “co-pay” is the full cost of the drug, it sounds like. Totally different.


#5

Yea, I had one HMO once where it was $40 a month which was like, super cool, but being on an HSA-eligible HDHP legally means that you have to pay the full cost of any health care until you hit your deductible, which in my case is $7,500 per year, the same as my OOP max.


#6

Yes, but there are some HDHPs which separate out prescriptions into a separate drug plan with something more like a copay…or at least there used to be. My employer HD plan was like that for a few years. Might or might not still be legal, and there may be nothing like that on the exchanges anyway, but it might be a useful thing to know about if it still exists.


#7

I understand literally nothing about American health care. But HI! I’m super grumpy this week because one of my disabilities (epilepsy) means that I can’t drive. Ever. Unless they invent a new wonder drug or procedure that works better than what I have now. It’s awesome that some people choose to drive or not drive…but between the disability and the not driving my earning ability is tanked. And I’ve spent about $5000 on epilepsy last year…and couldn’t afford physio for my epilepsy injuries. And then one of my friends said some awful and ableist stuff about taking the bus.

It’s one of those things where I actually forget how much my life and finances are dictated by a mostly invisible thing…until I remember that it controls literally everything.

Sorry for taking over your thread! So many hugs!


#8

Oh yea, there are! They aren’t HSA-eligible though. HSA eligible plans can’t cover anything before deductible. Also, almost never are biologicals included under drug plan as they’re a “speciality drug” that has additional administration costs (must be prepared a specialty pharmacy and delivered on ice/administered by a nurse.)


#9

You’re not taking over my thread! This thread is meant for you, too!

That sucks about epilepsy + driving. I have a friend who has epilepsy and is a really active biker (actually works for a bike shop) and she’s constantly reminding people that biking is not a choice for her, but a side effect of her disability, especially since she lives in literal Amish Country where there are no buses.

Screw that friend I don’t like that friend.


#10

I don’t like that friend, either! I have a cousin who has never been able to drive because of her epilepsy. But work is still being done on treatments, so perhaps there’s hope? Meanwhile, so sorry it’s impacted your earning ability. That’s so profoundly unfair.


#11

I’m also generally terrified of bad things happening to the American health care system. I have a number of chronic problems and I’m currently on a medicine for chronic migraines that isn’t covered by insurance. But (like anomalily) I’m getting it covered by the company’s assistance program, so I don’t pay anything out of pocket for the time being. Unfortunately it’s only good for the first year, so we’ll have to see what happens after that… I’m being switched to a new insurance company and will have to switch again sometime this year, so it’s all kind of exhausting… :-/ Wouldn’t it be nice if the sickest members of our society didn’t ALSO have to deal with tons of paperwork and bureaucracy and expense?


#12

Wow, I did not know this was a possibility and now I’m terrified too. I’m a listener that wrote in a while ago and we have similar deals with our medication, except mine is for Crohn’s Disease and costs 9k a month (since my stupid metabolism got so used to it after 10 years, I guess it started metabolizing it faster and I had to up my dosage from every other week to weekly). I might have other options as I work for a company under a large umbrella parent company that also owns a pharma company that makes a competing biologic medication that I could get for a reduced price, but I’ve been told that once you leave a medication, you can’t really go back, so I’m trying to squeeze as much more time on this one as I can (almost 12 years and counting!)


#13

I love all of you. And I seriously hope that everyone can get the meds they need. On that note, can someone train my cat to fetch meds instead of sleeping on a pillow? He’s super cute…but neither of us has the energy to get my drugs from the kitchen.


#14

I don’t think Percy is gonna learn new fancy tricks at this point, but I’d like to be surprised.
Maybe we should get you a remote control car that carries your drugs around the apartment?


#15

Yup. One of my biggest drivers towards financial independence is the thought that my RA might get bad enough for me to have to stop working. Right now, it’s fairly controlled by drugs, but fairly controlled still means I rarely go a full pay period without having to call out/ work from home. I actually had to take a stepdown in my career last year to doing something that I actively dislike because I couldn’t keep up with the demanding travel schedule of OldJob. It fucking sucks. On the brightside, I have pretty great insurance for a ridiculously low amount through my employer so my miracle-drug only costs me $20/month. Talk about golden handcuffs.


#16

Today I was feeling really fatigued (probably because I worked 49 hours over 4 days this week, not counting biking an hour each way to gigs) so I took a work-from-under-cat-in-PJs morning, and it was absurdly satisfying. This is a nice reminder of the flexibility my self-employed weird job gives me is very helpful, even if the financial uncertainty can get me down


#17

We’ll let’s just add to the pile of “feel like crap” - I got a nosebleed out of nowhere today, took forever to clear up, and then ended up fuzzy headed for most of the afternoon from the blood loss. This is just already turning out to be a banner week.

I guess I’ll film this week’s video from the floor.


#18

If you film with the camera pointing down, you could do some cool shots since gravity won’t be a problem! Embrace the opportunity for using a green screen?

Sounds like it’s going a bit rough, though.

My chronic issue is anxiety, and probably Hashimoto’s. It’s taken me years to accept that I should be on thyroid medication, so I’ll be starting that soon, maybe, depending on some other conflicting health things. I want to brush off my anxiety disorders as “not that bad” compared to others, but it’s made me far less reliable and effective at my job resulting in loss of promotion and meant I have to spend money on workarounds and keeping myself from developing new anxieties… As well as a desire to treat myself to alleviate some of the awfulness. I couldn’t eat food that wasn’t cooked by me or my husband for a couple of years, and had major anxiety aversions to several food groups, so now I absolutely revel in the freedom of being able to buy myself lunch or go out for a dinner date (when my anxiety is in a lull). I nearly cried while eating bao late last year because it was SO tasty and SO nice to feel normal.


#19

I was hesitant to post in here because I wasn’t sure if I counted, but you started it. :stuck_out_tongue_winking_eye:
I’ve got anxiety, too, and when you lay out the way it’s challenged your life, I realize that it … maybe is real and has challenged mine, too.

It is, for example, a not-small part of why I had a moment where I cried at work and dropped to part time as soon as they let me. Yes, part of it was wanting more time for art and more time to just be a human. But part of it was also not being able to handle all the shit being thrown at me, and part of it was anxiety causing that. I don’t think anyone at my job knows this, and things are going better for me now (and @LadyDuck I’m so delighted that your lulls allow you to feel “normal” too!) thanks to medication and lifestyle changes, but yeah. It has affected my earning potential.

PS I cooked chicken a few weeks ago and ate it and didn’t have a freak out about food poisoning myself. It was a major win. So yeah. :smiley: Anxiety managed and ~ under control = less food waste too!


#20

Oh man, this is a topic I wish we talked about more. My fun thing is delayed sleep phase syndrome, which is honestly not so bad on the spectrum of chronic health issues. And if my job would just have a flexible start time it would hardly be an issue at all… but I have to be at work by 9 am and it is ROUGH. I end up spending a lot of money on things like oops-gonna-be-late lyfts (I’d rather bus), expensive apartments (gotta live as close to work as possible), premade food, and sleep-deprived impulse purchases (giant stuffed Pusheen, anyone?).