Given the advent of online bill paying years ago, my home mailbox doesn’t see all that much traffic; it is generally reserved for a few select medical journals, cooking magazines, and the usual junk mail. After my cancer journey began, however, it was flooded with a whole host of interesting items–cards, letters, care packages, appointment reminders, test results, patient satisfaction surveys, and yes, medical bills.
First, the result letters. I found it amusing that it was the day before surgery when I opened a letter that told me I had a highly suspicious mammogram result. What a long lag; I honestly wondered why even send these things in the mail. Later, the MRI report arrived; the lengthy explanation and the nature of the comments suggested that the radiologist was hedging, truly on the fence regarding the interpretation. I’ve seen this before, however, and I don’t envy their position, trying to make sense of very subtle findings. This letter was followed by my biopsy report, then pre-op labs, but I noticed I never got a result letter regarding the mysterious CA-27.29. This tumor marker was somehow ordered in error when my oncologist requested BRCA testing; I suspected someone realized it was the wrong test and was too embarrassed to send it.
At the same time, I was getting constant correspondence from my health insurance company. After personally avoiding doctors like the plague, having only one physical in the past three years, suddenly I had exploded onto their scene. I recall thinking, we’ll probably max any out-of-pocket deductible; what else do we need to get done? Turns out my husband was overdue for his first screening colonoscopy. Bingo!
But the communications were confusing to say the very least. “Explanation of benefits,” “THIS IS NOT A BILL.” It’s also the first time that we must commit to a somewhat large but necessary expense with absolutely no idea of what is to come. When purchasing a new vehicle, I did a vast amount of research online prior to even setting foot at a dealership. I had my down payment, monthly payment, trade in value of my SUV–all of this worked out ahead of time. I didn’t like the uncertainty of medical bills, at all.
I even tried to figure out if my own hospital and clinic was “in network” versus “out of network” and how it affected my choice of doctors and my bottom line. Despite combing through the website, and reading the fine print, I was getting nowhere; I decided to call and ask some questions over the phone.
I was connected with a very nice, rather young sounding man; “I am afraid the University is out of network for you.” (Ah, the irony, since I work there.) I asked, “Can you help explain how that translates into real life? I would like to know the cost difference, and if it is worth it to get the expert opinion.” He replied, “Every facility or provider charges something completely different, then the payer compares the out of network charge to what would be charged in network. Next a process occurs as to what to do with the difference, including some cost absorbed by the provider or facility, the remainder passed on to the patient.” How this is actually calculated, he cannot say–despite, I will find out, the payer sending lengthy letters providing very detailed annotations: “service not billable in facility provided”, “charge exceeds maximum allowable billable amount”. I had never realized how incredibly confusing, how truly backwards our system of payment is. Trying to anticipate any expense before the actual appointment (or MRI, or surgical procedure) is next to impossible.
Finally, after all the above, many weeks later an actual bill would show in my mailbox. When opening, I felt like cueing a drum roll; is it a small copay or a huge chunk of money? Compare and contrast: for the first MRI, almost $4,000, my responsibility, $50. I thought, now that’s a pretty good deal! Next, for a $600 ultrasound, I owed $280. For the first office visit with Surgery, $180; Oncology, $360. For same day surgery, a total of over $18,000, I needed to pay: only $50? But wait, that’s just the facility portion, the professional fees come later–$964. None of this made any sense to me, in terms of the vast differences in what I actually ended up paying. And again, it’s terrible that everything is retroactive; no way to plan ahead, to budget for these expenses. I have heard that medical bills are among the top three reasons that a person declares bankruptcy.
I cannot help but think back to a patient of mine who I followed for over a decade, Rachel. She came to see me for a specific symptom two years ago. After I entered the room and greeted her, she said, “I can feel a lump in my left breast. It’s been there for a while, I think, but it suddenly got bigger.”
I examined the area; I had a sinking feeling, it was a hard, irregular, 3 cm mass, easily palpable just left of the areola. “I am concerned about this. Can you have a mammogram and ultrasound today?” She agreed. I sent her immediately to the Breast Center and of course the imaging was highly suggestive of malignancy. They offered to biopsy, right then and there, but she refused, and left. I called her later to find out why.
“I’ve been having problems with my insurance. I’m wrestling with their website, experiencing technical difficulties. I need to be certain that I have coverage; I just can’t afford any of these expenses out of pocket.” I emphasized again the suspicious finding and the need for a biopsy; Rachel said she’d come back as soon as insurance is sorted out.
Over six months later–six months–she’s on my schedule again, this time for a skin rash. I walked into the room; “How are you? I haven’t seen you in so long!” She said, cheerfully, “I’m ready now for my biopsy!” I just about fainted. This hasn’t been done yet? I tried to hide my surprise, suppressed the shocked expression on my face. “Yes, let’s get you in right away.” And the skin rash? The breast mass is now visible to the naked eye; the skin overlying it showed irregular contours.
I was so upset by this, I spent a good half hour searching the EMR for documentation surrounding what happened. I read multiple notes; the Breast Center had contacted her, my nurse had called her, our clinic social worker as well, to help navigate the financial issues. It appears that we did everything we could, short of fixing the actual problem.
As my own medical bills started to accumulate, I remembered I received a teaching award that same spring from the medical school, and it came with a $2,500 check. This was unexpected; many awards simply come with a plaque, but the recognition is appreciated, and it’s something to list on your CV. But as I was considering this amount, I was also reviewing that complicated “explanation of benefits” form, which per my read lists only one helpful figure, and that is my out of pocket maximum: it’s… $2,500.
I thought: right back at ya! Thanks for the award; now that money, it’s just going back into the coffers at the University of Minnesota. Perfect use of it, actually; and in my opinion, an example of providence. I felt blessed, truly grateful to have these extra funds in addition to financial stability. When I think back to my patient Rachel, I can’t imagine waiting six months, the fear and the anxiety surrounding it, in addition to the obvious financial stressors. I couldn’t even wait six days.
I found out later, she was stage 3, HER2 positive and needed surgery and chemotherapy. Unfortunately, she developed a rip roaring autoimmune hemolytic anemia from Herceptin. She was admitted; the drug had to be stopped. But she’s a tough lady, she survived all of this, and I am still following her, to this day. Each time I see her, I cannot help but wonder if earlier diagnosis would have impacted her outcome; in retrospect, I am not sure 6 months made any difference. But there are plenty of other instances where it could have.
In 2016, the year I had cancer treatment, the percent uninsured in this country was at an all time low (8.2% compared to over 18%). This was very good news, of course. But Rachel’s story and my own experience illustrate this is only the beginning. Or I should say, it’s just one facet of the hugely complex, multilayered, dynamic issue of providing cost effective medical care to a population as a whole. Certainly there is dissatisfaction on both sides of the aisle in terms of what has or has not been accomplished with health care reform. There are still many problems in terms of availability of insurance plans, what coverage they actually provide, sky high premiums, high deductibles, how much of the costs are passed onto the patient, the number of people choosing to simply pay a fine rather than get coverage, then of course the red tape, the never ending changing of formularies, the explosion of prior authorizations, other unintended consequences.
I realize there are no easy answers here, but now I can honestly say, I have a much better appreciation of what it is like to be on the receiving end of medical bills. And how complex it is to navigate your own health insurance coverage, especially when a major health issue suddenly arises, and you are trying to choose your doctors to help manage it.
I’m also keenly aware of the high price tag on so many “routine” studies. Compared to some colleagues, even before my diagnosis, I tried to practice a bit more conservatively; I tend to order fewer tests, and rely on clinical judgement with close follow up. After this, I’m even more cautious, because I’ve seen those bills arrive in my mailbox weeks later, and have thought; was that MRI really worth it? Hopefully the influence of engaging the health care system–both in everyday practice and now my personal experience–will result in a move in the right direction, a shift of perspective, a lean towards more cost effective care.
And going forward, as 2016 drew to a close, I was extremely grateful when the most medically related correspondence in my mailbox reverted back to academic journals, once again.