Over the last several months, I have been introduced, in a very up close and personal way, to the fact that economic system in this country simply does not allow most people to break out of poverty, no matter how hard you try. All it takes is one illness, one job loss, one misstep of any kind, and you are screwed.
Back in late 2019, I had a nasty lupus flare that landed me in the hospital—and at that time, I had no insurance. To make a long story short, I ended up having to get some financial help to cover the bill. I also managed to get a Marketplace plan—which I thought would cover me for any follow up care I would need after the first of the year. Boy, was I wrong about that.
Often times, lupus flare-ups are treated with high doses of steroids, which basically shut down the immune system. Then, in order to avoid developing a condition called renal insufficiency, the patient is tapered off the steroids. Sometimes, patients develop serious side effects as a result of the steroids—in my case, I developed nearly uncontrollable diabetes. My doctor decided I needed to get off the prednisone she had prescribed ASAP, so she decided to treat me with rituxan instead. She had mentioned that the insurance company was giving her a hard time getting it approved, but said she would get it done. She also stated that I could probably get more help from the charity that helps cover medical bills for the hospital if the insurance, for some reason, did not cover it. I received a call a few weeks later stating I was cleared to come in and get the infusions. I assumed this meant the clinic had gotten approval from the insurance company. I never thought to question anything at the time. I was still pretty miserable and just cared about getting better so I could work and take care of my family.
So I went ahead and did the rituxan infusions, and went about my business. It started working within the first few weeks. I got off the prednisone and my blood sugar returned to normal. I was able to go back to work. I was laid off a few months later when the pandemic started hitting my area hard. The rituxan had worked wonderfully—I no longer had any joint pain and I felt better than I had in a long time. Even now, I am doing pretty good—far less pain in my joints than before, and the autoimmune hemolytic anemia has not returned.
Then, during the summer, I got a bill in the mail for over $20,000 for the infusion therapy!
I thought it was probably a mistake. I called the billing office at the hematology/oncology clinic where I had my rituxan treatments, and they told me the insurance company ended up denying the claim! They had apparently tried submitting it several times. They told me how to appeal the decision, so I did just that. After my attempts to get the insurance company to pay for it did not work, I tried getting assistance through the program at the hospital—again, no dice. By this time, it was late in 2020, so I attempted to set up a payment plan with the clinic. Unfortunately, the least amount of payment they would accept was way more than I could afford each month, so I started sending them what I could afford—about $100 a month.
I went through all of 2021 and the early part of this year paying them that amount, but then, back in June, their collections people starting contacting me. They threatened to take me to court and said they were going to garnish my wages and attach a lien on my car and home. So finally, back in July, in order to get them off my back, I took out some high interest loans to pay them off. Now I am working four jobs—about 110 hours a week—to pay them off.
My weekly schedule looks like this…
Monday—Friday, 8 am to 4:30 pm. I work my main job for one of the large health care provider networks in my area.
Sunday—Tuesday, 11 pm to 7 am—I work the midnight shift at a hotel. (I try to sneak a nap for a couple of hours in the back of the office, out of sight of customers and cameras, since I am basically on the clock most of the 24 hours on those three days.)
Seven days a week—I work as a paid caregiver for my daughter. I put in 30 hours a week doing this.
Saturday and Sunday 5 am to about 1 pm, I work at a local fast food restaurant in the kitchen. Thankfully, I don’t have to deal with a lot of people at this job—I just do my thing in the back, clean my mess at the end if the shift, and go home.
And I still just barely scrape by, by the time I pay on the loans I had to take out in order to stay out of court! (Bankruptcy is not an option for me, btw—I have to serve as guardian for my adult autistic daughter as well.) If I had known I was going to end up in this situation I would have probably refused the rituxan treatment and took my chances with the prednisone!
I am not alone in being in a situation like this. There are literally millions of American still struggling with medical debt, and many who can’t see a doctor at all, either because they can’t get insurance, or because the deductibles and co-pays on their insurance is more than they can afford. While the availability of Marketplace plans has helped a lot of people avoid horrible medical bills like these, there are still many ways a person can end up with astronomical bills like mine. In addition, the No Surprise Act went into effect at the first of the year, which might have saved me from the nasty little shock I got when I opened the medical bill from the infusion clinic!
Still, there is much work to be done on the health care front in this country. I doubt things are going to improve much until we have a single payer system, and reforms are put in place that make it harder for patients to be denied health care their doctors deem critical.
Anyway, I just wanted to apologize for not being around as much for the last several months. I have been lurking, but have had little time to comment or write diaries. Read the fine print before you agree to any treatment, if you possibly can. Or you could end up filing for bankruptcy, or working insane hours, like me!
Have a great weekend, everybody, and a wonderful holiday season.