Be Your Own Medical Advocate: The Reference Number and the Diagnostic Code

The best movie of the year is Dallas Buyers Club. The Oscars are this Sunday and I hope it wins Best Picture and a wheelbarrow of golden men.

Ron Woodroof, the main character, discovers that to survive he must become his own medical advocate, and the best way to do that is by being a medical advocate for other people at the same time. Ron is willing to break the law, skirt the law, and offend people in the process (which I don’t recommend) but in his mind he must do it survive.

Growing up in San Francisco in the 1970s and 1980s, I saw how AIDS destroyed lives. As a budding wannabe journalist, I also met several Ron Woodroof-type medical advocates, and they impressed me with their patient persistence.

I remember one man with HIV, Steven, who was working hard to get insurance companies to pay not just for Pentamidine to help combat the onset of pneumocystis pneumonia, but to get them to approve aerosolized Pentamidine, so AIDS patients could breathe it right into their lungs and fight the pneumonia that often killed them. Insurance companies had not yet approved this new method of treatment.

Steven was a medical advocate for three men with AIDS who were too sick to fight for better care for themselves, and he took a living stipend so that he could work full time for them, and also for himself. He worked the phones all day, five days a week, on their behalf, and his own, and fought for service he could get for them. 

As he grew sicker, he knew he may need to then pay for his own medical advocate who would then fight on his behalf. I had a lot of respect for him working those phones.

You may need to become a medical advocate yourself some day, and work to get great care for yourself, a parent, spouse, loved one, or a child. You may want to behave more like Steven than Ron Woodroof, but you’ll need to be patient and persistent.

The American Health Care System works, if you have a challenge they know how to address. You may be having a baby, need to set a broken bone, or need surgery. The care, the cost, and the payments and the insurance are pretty straightforward. Problems start when you have a health challenge that doesn’t go away, doesn’t get better, and they don’t know what to do. Or, your doctor wants to try something new and different. Expenses rise for everyone, and a complicated game begins. 

That’s when you’ll need, or need to become, a medical advocate.

Here are some tips on how to become patient and persistent.

1) Keep a phone log, and make sure they keep one too.

Keep a log book. Whenever you call a doctor’s office, a billing department, or an insurance company, write down the name of the person to whom you are talking, get their extension (if they can give it), and write down all the details you can about your conversation. Ask them if they are logging the conversation as well.  Before you hang up, go over your information to make sure it’s accurate, and ask the person if you should ask for them personally the next time you call. Finally, ask if there is a reference number for the call, so that you can refer to it the next time you call them.

2) If you are talking to an Insurance Company, each call has a Reference Number

This is important. Insurance companies are run by people. The rules are so complicated and changing so quickly, the assurances that one person gives you may not backed up by the next person you call. This is a bad conversation to have:

“I just got my doctor’s bill, and my new asthma breath test wasn’t covered by my insurance, but when I called last month, Debbie said it was.”

“There’s no Debbie here.”

“I called on the 21st, and 9:30 a.m. and talked to Debbie, and she said that my policy would cover that visit and that test at 90%.”

“Sorry, whoever told you that was mistaken, or you heard it wrong.”

When you call and get information and assurances, make sure you get the reference number of the call, and write it in your log. This way, your conversation will go more like this:

“I just got my doctor’s bill, and my new asthma breath test wasn’t covered by my insurance, but when I called last month before my visit, Debbie at extension 712 assured me that it was. May I give you the reference number of that call?”

“Sure, give me the number and I’ll look it up for you.”

You must track your costs, and who pays -- otherwise you will pay more. At the same time, listen to what the voices say while you are on hold. When you call Blue Shield, the recording does say that (I am paraphrasing) the conversation you are about to have is not a guarantee of services, coverage, or payment.

That’s an even better reason to get the reference number, since it allows you to keep the conversation going, even when they get their information wrong.

3) Doctors offices don’t really know what insurance covers.

If you call a doctor’s office and book an appointment, you may wonder if the visit, the procedure, the drug, or the diagnostic test you will have done is covered by your insurance. The hard-working staff may assure you that it is covered. They may even sound like experts, since they work with insurance companies every day.

But your doctor’s office is NOT the insurance company!  Offices are run by busy people who write, enter, print, bill and mail information. What one person says on the phone isn’t always right. Someone in a doctor’s office can speak from experience, but they cannot guarantee anything about what an insurance company will do.

A doctor’s office is sometimes guilty of saying what they think you want to hear, to get you to come in the door. A patient is a customer, after all.

Therefore, if you are going to a doctor or a clinic for a new test or new procedure, or you’re being referred, you can call up and ask for the Diagnostic Code that the office will use for what is being done. Keep a log of the call.

Then call the insurance company, and give them a description of what you are going to have done, and then give them the diagnostic code (numbers and letters) of that procedure/test/exam and see what they say.  Only they can tell you whether it is truly covered.

And get a reference number for that call. Otherwise, you may get a surprise bill from your doctor’s office, for something you thought was covered, but isn’t.

4) The Surprise Bill -- Use the information you gathered to lower your costs.

I had bad asthma that was keeping me awake at night.  I’ve had asthma intermittently since I was a child. It gets worse in spring and at the start of winter.

I went to an allergist and asthma specialist who wanted me to exhale into a machine, which would test the inflammation damage in my lungs.

My insurance pays for the test, if it is coded for “asthma.”

My insurance does NOT pay for the test if it is coded for “seasonal asthma.”  My insurance company considers using that machine and that test for “seasonal asthma” as “experimental,” and is therefore not covered.

I had my reference number of my call to the insurance company. I had the code for the test for asthma. I had my call logs to both the insurance company and the doctor’s office.

I called my doctor’s office and my insurance company and asked that the bill be resubmitted, with the code for “asthma” instead of “seasonal asthma,” and the bill was resubmitted and I saved myself $285. My co-pay was $15.

I did not have to debate anyone whether my asthma was seasonal or a life-long issue that came and went. Because I had phone records and reference numbers and diagnostic codes, they simply did it.

But I did make sure I recorded that conversation in a log, with a reference number, and I got everyone’s name and extension as well.

5) Once you are dealing with the Billing Department, the medical office can’t help you, but they still want you to pay.

Big hospitals and larger medical practices have billing departments that are separate from the doctor’s office, and you cannot visit them. If you object to a charge on one line of a bill, you cannot walk into the doctor’s office and ask to speak to the person who sent you the bill, because they are not there.

The person behind the desk will take your information and help get you the service. They will take your credit card and receive payment from you, but once you object to the cost, they can’t help you. Here’s a typical conversation:

“I’m here for my follow up with the doctor. I had my first procedure last month.”

“You have an outstanding bill for that procedure that you haven’t paid.”

“I know, there was a mistake. Can I talk to someone in billing? The insurance company told me something different.”

“The billing department isn’t located here. All I know is that you have an outstanding bill, and we’d like to receive payment before you see the doctor. Is there some amount you can pay today?”

“Can I visit the billing department? Can you give me their address?”

No I can’t. You can’t visit them.”

“They don’t get back to me. Can I still see the doctor?”

Instead, you want the conversation to go this way:

I’m here for my follow up with the doctor. I had my first procedure last month.”

“You have an outstanding bill for that procedure that you haven’t paid.”

“I know, there was a mistake. I printed out this document for your files. I am disputing the bill because the first procedure was coded incorrectly, even after I called this office and the insurance company. Here is a record of my calls, their reference numbers, and their names. In fact, I’ve been in touch with Joan in your billing department. In the meantime, I have to keep my appointment, because the doctor said it was necessary for my medical care.”

“I’ll put these in your file.”

“Sorry to bother you with all this, but I wanted you to see that I’m organized and I’m on top of it, and I’m sure this will all be figured out soon.”

6) Do you research before you go to a new doctor or clinic.

Name your Chronic Condition -- Arthritis, Asthma, Fibromyalgia, Irritable Bowel Syndrome, Diabetes, Pain, Back Problems, Insomnia, Chronic Fatigue --

There’s a clinic that deals with nothing but your problem!

However, check their reviews on and on and before you got to any appointment. If you read that their billing is wacky, or they overcharge, or they ding you with hidden costs, cancel the appointment. Go somewhere else, even if it’s more expensive.

7) If you keep a good log -- don’t be afraid of the Billing Department.

Once you dispute a bill, scary things can start to happen. If you have a good log with names, dates and reference numbers, you don’t need to be afraid.

Just be prepared to spend a long time on the phone, a lot of time on hold, and be ready to leave a lot of voice mail messages as you get the runaround.

The bigger the medical provider, the scarier it can be. My family has had the biggest billing disputes with Cedars Sinai and UCLA.  Because they are huge they have huge billing departments, and the bigger the department the less compelled they are to deliver great customer service.

My family had a medical bill that was coded incorrectly from the very beginning. It was truly an error, and we had reference numbers of calls and the correct diagnostic code. But for two years we kept receiving a bill for over $5,000.

We called twice a week for over a year. We left messages. We asked to speak to supervisors. We got reference numbers and supervisors assured they would call us back. The bills kept coming, and eventually the even sent it to a collections agency. We then communicated with the collections agency with the same patient persistence that we treated the doctor’s office, the billing department, and the insurance company. 

Eventually, they backed down and we had our bill coded correctly.

It can be scary and exhausting.  Your time is valuable and you may want to just pay the bill and be free of it. 

However, if you know you are right, and if you keep good logs, don’t stop fighting. Stay diligent with the collection agency, and explain your situation. Tell them your story, and that you have an entire file that you can send them.

Eventually, the supervisor will call you and work with you. 

People fight audits from the IRS, and people fight collection agencies over incorrect bills and they win. If you are right and you keep great records, you will win too.

8) Be Patient, Polite, Kind, Funny, and Insistent

It's easy to dismiss someone who is just a voice on the phone. It's even easier to dismiss someone who has a rude voice.  When you make your first call and you start your log, be patient, kind, polite, and funny...but insistent.

If you start having billing problems, there is a good chance you will call that same person again. They are doing their job. Part of their job may be to dodge you. Be friendly. Find out if they have kids. There’s a good chance you’ll end up trading stories. After many calls, that person will become an acquaintance, and even an ally.

Then, the phone calls don’t seem so bad, either. After all, the person on the other end of the call has issues of his or her own, just like you.

It can even be pleasant, if you remember that we are all in this together.

Good luck!