A breast cancer survivor doing a seemingly routine oncology follow-up in the same timeframe with treatment for pesky respiratory problems expected modest copayments for healthcare — but instead, she got $1,591.21 in bills. She says she is stopping treatment because she cannot afford it — and addressing her state attorney general about her billing issues. The woman, a member of one of my online communities, posted in a discussion about runaway health bills. When I asked her to tell me more, this is what she wrote — a chain of events that is not uncommon, but is remarkable for its detail and for her willingness to tell her story. (I told her we would not use her name to protect her medical records online.) At the end, look for our suggestions for resources.
There are a couple of issues here:
1. My breast care as a breast cancer survivor.
2. My sinus/chest congestion issues.
I had been struggling with ongoing chest congestion and a severe cough, and was seen twice (but prescribed three rounds of antibiotics over approximately 7 weeks this past February and March). March 6 I saw a Nurse Practitioner re: the sinus/chest issue. I was prescribed a 5-day antibiotic. The coughing continued and led to a UTI from the coughing/stress incontinence, so I was again prescribed an antibiotic. Then my pharmacist suggested that I should have been prescribed Pearls to control the cough. …
Productive oncology visit
I had my annual mammogram on March 25, with a visit with my new oncologist following the mammogram. It was a productive visit — I had purchased a book for him regarding menopause and ERT/HRT and breast cancer as this was a topic I wanted to discuss — and I took it to him. He did a breast exam and we discussed my mammogram, and he recommended that I see him in a year. Additionally, because of my 7 years of clean mammograms, I would now be screening mammograms instead of diagnostic ones. All good things!
The cold/cough continued with ongoing bleeding and an inability to blow clean, so I went in again April 3. This last time that I saw someone (a nurse practitioner, the same person I had seen before), she determined that I was likely dealing with a sinus issue and also referred me for a CT Scan and to see an ENT, and was prescribed another antibiotic (a different one this time).
I was called to have the CT scan that Friday, April 5, and requested through my hospital an estimate. I was told it would be $78.21 so I decided to go ahead with it, knowing that it would still be my decision as to whether to follow up once we had results.
My results were that I have some issues with my sinuses and excessive mucus build up and a bone spur. It would be months before they called to schedule my visit with the ENT, and even then they didn’t have availability until mid-July. In the meantime, I had received bills.
Contradictory orders
Bills for the visit with the oncologist, which I had not expected, to the tune of $550.00. When I called my insurance about this, they said that the oncologist visit wasn’t required so it wasn’t covered since I hadn’t met my deductible (“but you’re close!”). So then I contacted my clinic via MyChart to let my oncology team know that I would no longer be seeing them since my insurance doesn’t consider those visits to be an important part of my healthcare.
My insurance company wanted to talk with me and arrange a call with my oncologist in that time also, trying to figure out whether this should have been covered. My oncologist responded to my MyChart message and said that once you are 5 years post-recovery, oncology visits are no longer necessary.
Yet my MyChart notes — including his from March 25, 2024, indicated that my oncologists recommended that I see them. My prior oncologist with Essentia had me coming in every 6 months AND at my last visit with him June 30, 2023, he noted that he would be leaving Essentia and that I would be able to choose another oncologist.
At no time did he, the department, or Essentia say that I no longer needed to come see them. In fact, they always said I should see them again in 6 months to a year. In my cancer journey, one thing that shifted and I learned was that I was no longer “in charge” of my appointments. I was told where and when I needed to be, and that was that. That was what was now required for my breast health. So I did it. I trusted that my medical care professionals were ethical and that I was doing what I needed to do for my own health.
Note: When I finished radiation, I was celebrated and told I had “graduated.” While I didn’t need a celebration of my being “finished” with oncology, they could have at least told me that I no longer needed to schedule these visits.
So my bills:
With nurse practitioner: $227.27
Mammogram: $0 (covered by insurance)
With oncologist: 506.00
CT Scan: $857.94 — I have paid $78.21
‘Couldn’t be accountable’
When I contacted my clinic (Essentia) about the discrepancy between the estimated amount and the amount I was billed, they directed me to my insurance. My insurance said that since they were not the ones who gave me the estimate, they couldn’t be held accountable and also could not explain why there was such a discrepancy in what the clinic offered as an estimate. Prior to my conversation with them, I had not known anything about being able to get an estimate from my insurance, only my clinic. Now I know.
So between the oncologist visit/bill AND the CT Scan, this is why I am going to my Attorney General Keith Ellison. This is the fleecing of the Essentia patients, and I am not going to be billed and bilked out of my money to pay for the brand new hospital they built (or the tearing down of the old one). It’s also why I will not be doing any other doctoring this year.
I was supposed to see my nephrologist because I have CKD (chronic kidney disease) each year for labs and a check-up, but when they called I explained that my medical debt was too high and I wouldn’t be able to come in. I did the same thing when they finally called about seeing an ENT — there are obviously some issues here, which my father has actually been through himself (I learned through this process), in which he has surgery to address the issues. I am not going to see an ENT or get surgery.
What you can do
It can be frustrating, and there’s not always something you can do. But here’s a start. (We do not give medical advice.)
Here’s our post about how to argue or appeal a bill. Sometimes an appeal to the insurer, the hospital (or doctor) will help, or sometimes it’s an appeal to the human resources department at work, if applicable. Even the state regulatory officials, as this woman notes about her state attorney general, can have impact, or maybe your local representatives. This post is long, but it might help.
Some organizations exist to help patients. Here are a few.
DollarFor is a nonprofit that will help see if you qualify for hospital financial aid (also, unfortunately, called “charity care”) and help walk you through the process. The rules vary by hospital and by income. This woman got a $6,000 bill turned into a $466 bill with DollarFor.
The Alliance of Professional Health Advocates has advocates for hire.
Patient Advocate Foundation has a case management program that says it will help as, yes, a patient advocate. Conditions apply.
The National Association for Medication Access and Patient Advocacy says it will try to gain access to medications for people in need. For people who need medications, a search for a patient assistance program might also help. Google “patient assistance program” “your medication.”
The PAN Foundation has information on funds for specific illnesses and conditions.
There are also other organizations like Susan G. Komen for the Cure (for breast cancer), RESOLVE (for infertility), IAmAls (for ALS) and other condition- or disease-specific organizations too numerous to name — and online resources like Facebook pages or Reddit communities where people can compare notes with patients and seek solutions, and possibly even find grants. These organizations can be good, better and best — the landscape changes all the time, with the devotion of time and resources depending on funding, governance and so on. If you know others who have the same issue you do, ask them or Google around to see who’s the most up-to-date and reliable. We do not give medical advice, and some of these patient communities are more reliable than others. Do your homework and analyze information carefully.
Rebel Health is a book from Susannah Fox, a longtime healthcare expert and former Chief Technology Officer of the White House Office for Science and Technology Policy. She’s an expert in all things peer-to-peer health, where patients (or, as we like to call them, PEOPLE) compare notes and find solutions. We have seen and heard many success stories from peer-to-peer health — while again, we note that you should do your homework and analyze information carefully.
