I try not to focus on the financial aspect of living with a chronic, rare disease because I don’t ever want to give the impression that my intention for writing this blog is to solicit money from readers, because it’s not, but it’s hard not to talk about money when this website is (supposed to be) all about #mastcelldiseaseawareness and my personal experiences living with it.
Money plays a huge role in a lot of areas, including managing our disease, so I think it’s a good thing to talk about the subject. I’m not alone, either. I’ve heard from a few readers who have told me they are in financial dire straights after being forced out of work by symptoms, along with years of going through the medical merry-go-round, and my heart really goes out to them.
We’ve had it pretty good as far as medical costs relating to my mast cell disease go and I feel pretty lucky, especially after what just happened yesterday. I’m calling it our Easter medical (bill) miracle. I still wish I had a magic wand for us all and I can see how easy it is to get to a very bad place where you have to make some really tough decisions and how hard it is to get out of it! Medical debt in this country is like quicksand and it pulls people down every single day. It’s one of the leading causes of bankruptcy, last I read.
I had barely dipped my toe in the water, so to speak, after avoiding doctors and suffering without them for a very long time because between the time of my birth and somewhere in my thirties I went a lot and then had an epiphany and figured out there wasn’t much they could do to help me so I was wasting both our time. The tests always came back negative, the pills (almost) always gave me hives (and worse) and I got sick of the side-eye some of them seemed to give me when I described all my crazy symptoms and medical history to them.
So it didn’t cost me a lot to go to doctors for quite a long time and I didn’t use our insurance much at all except for regular gyno exams. I just shelled out $600 a month in premiums and ‘got on with it’. It wasn’t until I got desperate a year and a half ago and finally went to the immunologist that I really got a taste of how expensive ongoing medical care can be.
It was shocking!
Within weeks I had wracked up quite a lot in initial testing, but luckily the insurance covered most of that. My first really high dollar test was a bone marrow biopsy and the local doctor who did it was in network and got paid a kingly sum, no problems at all. I did end up paying for a few things out of pocket those first few weeks, but overall our insurance was picking up the tab nicely.
Now we were very anal about checking to make sure all of the tests were covered and the clinics were all in network for our plan. I emailed both the clinic AND my insurance and got confirmation that the specialists in Utah were all in network and I was green lighted to go ahead. I booked my tests and headed down to Salt Lake, without even thinking about finances. That was already covered!
It wasn’t until a couple of months later that we got hit with a bill for nearly the full amount except this one was a much higher number because I’d had both a BMB done (at a mast cell disease specialist mind you!) AND and upper and lower GI at the same hospital. All of which we were told would be covered but suddenly weren’t covered at all, because of an apparent “miscommunication” with the insurance company and the specialist clinic in Utah (!?).
It was more than we had in savings and more than we could afford to put on credit cards or make comfortable payments on in a short term. Our options were things like refinancing our house or selling our boat, things we don’t ever want to have to do!
For months we battled with them and were told we had no choice but to pay up or else (!) by the clinic and completely shut out by the insurance company and that really opened my eyes to the true cost of this disease and the potential for it to completely ruin us financially, just like that, despite our best efforts to do everything right in life.
I don’t know about you but I get far too triggered when it comes to dealing with things like fighting insurance companies over monetary sums that equal almost what I paid for my car(!). I am fine with the day-to-day stuff, like making sure to send payments out, but not the big things. I end up going hoarse and close to tears, or covered in hives and choking on mucus if it gets too bad. So obviously I need backup for these things, which is why I am sooo lucky to have the hubs to deal with these sorts of highly triggering situations.
Honestly, I don’t know what I would do without him!
Long story short, after not getting a straight answer from our insurer after multiple tries, he somehow he was able to finally get the clinic itself to understand that we wouldn’t have went had we known that this would all be coming out of pocket. Which is why we spent so much time calling ahead and asking both them and our insurer.
Somehow he found a kind soul who listened and understood. They ended up speaking to a manager and they approved writing off most of the bill so we owe just a fraction. It’s still not fair, but now we can breathe a sigh of relief and stop worrying so much about money (for now) but it was pretty scary, especially since we did everything right to begin with.
Mine is just one of millions of tales like this. It’s just another aspect of living with this disease that I have to deal with and I can’t help but think that all this stressing over money this last year has kept me from making even more progress with my treatments. I’m hoping to really see a difference now that the pressure is off and I’m keeping my fingers crossed that I don’t need to go back for anymore expensive tests anytime soon.
Anyway, it was a nice start to the holiday. Have a good Easter weekend and stay safe!