“This costs as much as a new car.” That’s what my nurse said to me as he hooked up my first treatment of intravenous immune globulin (IVIG).  I remember looking at my mom and husband, terrified.  He had to be joking, right? I mean, it didn’t really matter what it cost at that moment because it was about saving my life. But do you know how much a car costs these days?

As we all kind of laughed about it, I couldn’t help but begin to worry about how much all of this was going to cost.  A week in the hospital, all the meds, different doctors, and other costs quickly add up. I have health insurance, but the uncovered costs of managing my immune thrombocytopenia (ITP) are substantial and growing. 

Read about experimental therapies for ITP

After a few months of being home and on the mend, the hospital bill finally arrived. The nurse was, in fact, not joking that IVIG cost as much as a new car (and I had more than 1 dose).  The bills just kept coming. I looked at my husband and said, how are we ever going to pay all of these bills?  

As much as I had hoped my ITP was an isolated episode, I, unfortunately, had several more hospital stays over the next 2 years. In addition, I was getting weekly blood work to monitor my platelets at $30 a draw.  In a year, that is 52 weeks in a row and sometimes, multiple times a week if I was significantly dropping. 

Having a chronic illness is expensive, the bills just kept coming.  I searched for many financial assistance programs with no real luck.  I finally realized I’m just going to be paying medical bills for the rest of my life, and that feeling was awful. I felt so defeated. I work so hard, so many hours, and so much dedication to my career to now have to worry about paying all of these bills in addition to the bills of life. After my third hospital stay, I basically threw my hands up in the air and said, “It is what it is.” I will just have to accept the fact that this is now our life.  

I’ve been fortunate to not have any hospital stays in the last year, however, the bills don’t just go away because I haven’t been in the hospital. It’s an uneasy and disheartening feeling to know that this ITP diagnosis has had such an impact on my life in many ways. Some days are harder than others but the thought is always lingering in the back of my mind.  

While my financial hardships were mostly from hospital stays and prescriptions, many other ITP warriors have to be on constant treatment to keep their platelets stable. Weekly infusions, some costing anywhere from $5,000 to $10,000 per treatment. While there have been some advancements in the world of ITP treatment options these past couple of years, they are still very expensive. Some pharmaceutical companies offer payment assistance if you qualify or if it is a newer drug. They tend to have assistance programs as well because they may still be in trial stages. 

I have a few fellow ITP warriors in other countries, and that could be a whole separate conversation on their medication availability and financial hardships. Then, there are some ITP warriors that can’t even afford to get treatment, so they just live in fear each day and hope that nothing major happens. 

Overall, having a chronic illness is very expensive. It’s a major hardship for most people suffering. My hope is that 1 day, everyone can afford the treatment they need while sick, not just ITP warriors.  Everyone deserves good health care; they should be able to get it without worrying if they can afford it or not.