Green, Benjamins, Dough, Coin, Bucks, Cash-money, Salary, Wealth, Loot, Moolah… Okay, enough with the synonyms! No matter what terms we choose to use for Money there is always going to be a certain level of skirting around the subject. For those of you who do not know, one of the first treatments I was put on to treat my Paroxysmal Nocturnal Hemoglobinuria (PNH) was a drug called eculizumab (Soliris). I was on one of the most expensive drug therapies in the world coming in at more than 500,000 dollars per year!!! Approved for PNH in 2007, I was just thankful to have this kind of a treatment available. The price tag of the drug didn’t matter, my life obviously was the top concern. I wanted to focus in on the topic of financial difficulties because some people might be unaware that this is something most patients have to struggle with.
The reality is that for myself, I went from walking across the stage getting my college degree, to laying into a hospital bed. I have been on state insurance ever since my diagnosis in 2014. My grandmother always used to tell me that she did not ever want me to lose my “good insurance” through the state. This always made me sad. I told her that it was not my life goal to stay on state insurance. If that were the case, I could only make up to 24,000 per year. How can any person actually survive on this? Especially being a young single woman trying to live on her own with 100,000 dollars in student loan debt…. That’s right! I currently have 60,000 in principal debt plus 40,000 in interest because I have had no choice but to constantly defer my debt.
Why did I have to keep deferring you ask? Well, for starters I am not rich, nor are my parents. In the six years since being diagnosed I have been unable to have steady employment for various reasons all related to being sick in some way shape or form. The amount of money that I owe makes me sick to my stomach…and believe me it has kept me up several nights wondering how I will ever be able to stand on my own two feet.
I know I am not alone when I say the last thing that we should have to stress about is how we are going to pay our medical bills or the mortgage. Something is very wrong with this picture. Not only do I fight the battles that you see, but I also fight to get myself out of this mountain of debt, that silently suffocates so many of us. But, we are not supposed to talk about any of this… right?? Not anymore…this is a battle that many patients fight and should never have to. We did not ask to be sick, so why does this fight for our lives come at such a heavy price… literally?? Silence Broken.