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When Your Greatest Battle Becomes the Hospital Billing System

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I’m in a dysfunctional relationship with the hospital where I receive my care.

I was diagnosed with Pompe disease in July 2015, and in November 2015, I began receiving a lifesaving bi-weekly treatment. In addition to my treatment, I see a host of specialist several times a year, including a neurologist, pulmonologist, cardiologist, a speech therapist and an orthopedic doctor. All of this is extremely expensive. My treatment alone cost $160,000 per month, about a $15,000 increase from last year.

In the last eight months I have had 15 treatments, 13 doctor’s appointments, two steroid injections in my back for pain management, one pulmonary function test, 14 physical therapy appointments, an MRI, an EKG, an echocardiogram, a bone density scan, and on May 1, I have to have a swallow test where they will pick a camera in my nose because I am allergic to barium and cannot take it. I also spent three days in the hospital in November. I am no stranger to the hospital here; in fact the nurses, support staff, valet parkers and receptionist know me at some locations because I am there so often.

Don’t get me wrong. I receive wonderful medical care and am happy with the doctors and nurses who provide that care. In fact, I don’t know what I would do without them.

My problem is with the billing department.

I have been receiving care at my hospital with the same insurance for over a year. My family receives their routine medical care at this hospital as well, so why can’t they get our medical insurance entered correctly in their system? I have given them the correct information over the phone and in person more times than I can count, and still when I show up for appointments I am often told that the information they have on file is incorrect. One time it was even purged from the system. While checking in for treatment the receptionist asked me if I was self-pay because my insurance information was not in the system. I told her that my treatment cost $80,000 and that I was not self-pay. She and I both laughed at the absurdness of her question once she found out the cost, and I thanked her for catching the mistake and asking me about my insurance. When I had my port placed three years ago at the same hospital, the same thing happened. In fact, during the check-in process no one even asked me if I had insurance.

I have found that other patients have similar problems with billing. You might be thinking, “Why don’t you just go to a different doctor or different facility?”

I have a rare disease and finding a doctor who is knowledgeable of my disease can be difficult, and in my particular state, there are two hospitals that have cornered the market, so to speak.  This can create a problem for rare disease patients; there is already a shortage of doctors who are knowledgeable or willing to treat rare disease patients, but when there is a problem with the billing and claims process, it’s a system problem which is an even bigger problem than finding a new doctor. No matter what doctor I see, if he or she is in this hospital’s network of doctors, the claim is still processed and billed through the broken

All of this has made me reconsider going to the doctor.

I feel stressed when bills come in the mail, and I have considered changing my treatment and medical care to the competing hospital in the area.

Since I started writing this almost three months ago, I have contacted the ombudsmen at the hospital regarding my problem with their system and getting my insurance information entered correctly. I did not receive a response; however the problem seems to have been resolved.

I wish I could say my problems ended there. While my insurance information is now correct in the system, the problem I have now is that staff are telling me they are contacting my insurance company for preauthorization for some of the services I am receiving, and they have failed to do so. As a result, my insurance provider has denied the claims and the hospital is billing me for the appointments.

My physical therapist reevaluates my need for physical therapy every 30 days and tells me that she is submitting a request for reauthorization; however she failed to do this. In fact she has not submitted a request for authorization since February. All the while I have been receiving physical therapy. I haven’t had it for the last two weeks because I received a call from a financial counselor who informed me of the oversight and asked if I wanted to sign a waiver accepting financial responsibility. Of course I said no.

I am fortunate that I have a case manager and a person with my insurance provider that has been assigned to my account. These people are extremely helpful, and when they aren’t on the phone with me helping me to fix these mistakes, they are calling or sending emails to the appropriate people. They are often teaching me how to be a better advocate for myself.

I say often that having a chronic illness and disability is hard enough on its own, without the added stress of worrying about how you are going to pay for your treatment and care.

Patients shouldn’t have to find a new doctor or seek treatment at a different hospital because the billing department doesn’t know how to file claims correctly or because staff don’t file their paperwork on time or correctly.

When I worked as a social worker, if I failed to file paperwork or enter my documentation on time, I would receive a written reprimand from my supervisor– and if it became a pattern, I could have lost my job.

As hospitals across the country grow and start to focus on research, they can’t
allow the patient experience to suffer as a result. The hospital where I receive my care boasts about providing a world-class patient experience. Well, the “patient experience” should also include a smoothly operating business and billing system.

After all, hospitals are not providing their services for free, and patients do not deserve to have this extra financial stress while they are trying to manage their illness.

Originally published: May 2, 2019
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