Twenty two years ago, I was diagnosed with Crohn’s disease when I was 17 years old. My name is Rachel Johnston and I am a communications and marketing professional living in Los Angeles, California.
In order to treat my symptoms, I get monthly infusions of Infliximab, a Remicade biosimilar. The infusions are billed at around $11,000+ per month and the medication itself is billed at around $5-7,000. With the relief of currently having insurance coverage, I can expect to pay the max out of pocket right away ranging from $4,000 to $8,000 depending on the employer plan. When I was unemployed or freelancing and paying for my own insurance, I had a much higher monthly premium and max out of pocket of $9,000 or more.
To deal with the financial toll of my health, I have had to typically budget myself to expect about $12,000 in medical expenses per year, or about an extra $1,000 per month. This amount of money is about 15% of my monthly income after taking on a second job, which is only affordable because I moved into a shared house in order to get my rent down to about 30% of my income, when it was previously 40%. I have also had to make a lot of my life choices based on medical care. I continue to live in a very expensive city because the care I receive through my employer insurance is better than what I could access if I moved to another, cheaper city. However, the toll of a second job plus the stress of my health that I’ve been working on to improve more so in the last 3-4 years really affects my autoimmune state, and is counterproductive to my actual health. Though I must note that before my current employer, I had a $8,500 annual out-of-pocket max and a $350/month premium, which after 2 years, I was so far behind on payments due to not having steady work that I had to make a fundraiser for myself to make up for some of the costs I just couldn’t cover. Mentally, it’s a big burden to constantly think about the cost of my health, and I’m always worried about factoring my infusions into my schedule with taking work gigs, travel, etc.
I don’t even know where to begin with everything else. I’ve had this disease for so long that it’s just part of what is factored into every moment of my daily life planning. What groceries to buy, where I can go out to eat, when I can travel, where to live to access good doctors, and building my life around different procedures (infusions, surgeries, MRIs, colonoscopies, etc.).
I wish affordable prescription drugs could just be readily available now. It is hard to believe that other countries can figure this out and we “the greatest country on earth” cannot or will not. I don’t want to believe that the system is rigged – but sometimes I can’t find a reason to believe otherwise. I didn’t choose this and I’ve done everything imaginable to better my situation. I don’t take anything for granted, but the cost of my medication hinders almost every decision that I make.
Will I ever get to make decisions for myself without factoring in this burden?
