The Assertive Cancer Patient

Since I'm in a Pissy Mood Anyway ...

I'm in a pissy mood over my inability to get the new Typepad tool (AKA "compose editor") to upload photos to my blog. I have some great photos that I want to post: One of the car-full of plants I bought for Car Guy and planted in his front yard on Labor Day. Also a couple of photos from my trip to the beach in the Corvair last weekend with Car Guy and Constant, the Car Dog, top down all the way.  

So I'm frustrated, and pissy, and I decided this was a good day to sort out my stockpile of billing problems. Most of these are medical bills, of course, but not all. I also have a problem to sort out with Netflix, which insists that my credit card has expired, so I can't rent movies, but there on my monthly credit card statement are the charges for Netflix--$18 and change--which I need to have reversed. 

Regence

Older Son graduated from the University of Washington in June with a degree in business. I'm very proud of him, and even more proud that he managed to find a job despite the weak economy. But his health insurance doesn't kick in until he has been working for three months (pretty typical), so I'm still paying for a major medical policy with Regence. 

The premiums for that policy just jumped from $68/month to $80/month. 

So in my stack of bills was a bill for Older Son for September that said that I owed $12. It showed a balance forward of $68, leaving $12 still owing. 

I went to my checkbook, and found that I had written a check for $80 to Regence in early August. 

But when I called to sort this out, the person I talked to said--and this is the good part:

"Even though you pay the bill, I can't discuss this with you without an authorization on file from your son. It's HIPAA ... "

Now, as I've said before, I think this use of HIPAA is often just another barrier that hinders patients. I write all the checks for this insurance. I get the bills. I had all the info about my son that they could possibly want. And I wasn't asking for private MEDICAL info, for pete's sake. 

But this is the interesting part: The person I talked with obviously agreed with me, because when I responded to her statement with a non sequitor, "I checked my bank statement and the check for $80 that I wrote in early August had cleared," she went ahead and helped me anyway. 

She seems to think that I made two payments in one month and got ahead of myself that way. My checkbook doesn't show that, but if there is an error it appears to be an error in my favor, so I'm leaving it. Let Regence sort it out. 

Older Son received a packet in the mail about his benefits at the new job, and I need to make sure he applies for health insurance. That will save me $80/month, which will be welcome. 

Northwest Hospital

I now get my cancer care from Dr. Lee at Northwest Hospital, and early in the year a woman from patient services came to find me in the waiting room to talk about setting up a payment plan for my account, which was $300-plus. 

I mailed the hospital a check for $100 on April 1, another $100 on May 12, and $138.55 on June 8, but the hospital has been sending me statements showing that I still owe $221.34. 

Now the statements say my account is past due, so it's time to take action. 

I pulled out my bank statements, which show that the check dated May 12 cleared my account on May 15 and the one dated June 8 cleared on June 23. I had to call the bank to confirm that the earlier check had been paid as well. 

BUT, the bank statement doesn't show the payee on the checks, just the check number, amount, date cleared, and a number called a "trace ID."

The woman I spoke to at Key Bank, Sara, was helpful, but she couldn't confirm the payee on the checks, only that they had been paid. She said, however, if I called Northwest Hospital back and gave them the trace ID numbers, they would be able to trace the deposits. 

There is a remote chance here that these checks were stolen, perhaps by a hospital employee, but the more likely problem is that they weren't credited properly to my account. 

So, I called Northwest for the second time, and told the person I talked to, Nancy, that I had confirmed that the checks had been cashed and wanted to give her the trace ID numbers so that the hospital could trace the payments and give me credit for paying my bill. 

BUT NO. The trace ID numbers are not good enough. I have to go to my bank and obtain copies of the front and backs of the checks and present those to the hospital. 

So this means a trip to the bank and then probably one to the hospital to hand-deliver the evidence. I'm not trusting it to the mailroom at Northwest, or to the billing department, for that matter. 

If there are any fees involved, I'm going to deduct them from my bill. 

Does anyone here remember that I'm the one with metastatic cancer? 

Netflix

This one is going to be fun. 

In April, my bank, Sound Community Bank, sent me a new credit card. The card had a new number on it, I happened to notice, and it is good until April of 2010. 

This Visa card is the one I gave to Netflix to set up automatic payments for my movie rental subscription, and about the time the new credit card arrived, this message appeared when I went to the Netflix site:  

Your Credit Card Has Expired

The credit card currently on file for your account has expired.

Please visit the Credit Card page in Your Account and click the link to update your credit card information. You can either update the expiration date, if applicable, or enter a different credit card.

Your discs will begin shipping once the credit card expiration date has been validated, typically within 2-4 hours. 

OK. I wasn't sure it was worth $18/month to me to watch movies. Some months, I only rented three or four, so I waited to give my new credit card. 

But guess what? Netflix was getting paid all along. The charges have been appearing on my credit card statement month after month, even though Netflix won't let me order movies. 

I'm going to start by calling my credit card, Sound Bank, to get them to reverse these charges. Then I'll talk to Netflix.  This is one reason I hate automatic payments--they take your money first, and you have to fight to get it back if a mistake has been made. 

Actually, I did this is reverse order: I called Netflix first and talked to Mike. 

Now, if you read the message above, it says that my credit card has expired, and I can't rent movies until I update my account information. Which would lead me to believe that my credit card cannot be charged if it has expired. 

But no. According to Mike, the credit card company allows Netflix to continue to charge my credit card for the monthly payments, and he said, that movies would have been shipped to me if there had been any in my queue. 

Then we got into a long explanation which I didn't entirely believe, but the point is I was being charged without being able to use the service, and I wanted a refund. Mike said he could only refund two months' worth of payments, which I accepted, and then I cancelled my Netflix subscription. 

I think I'll go back to my neighborhood movie store, which treats its employees better than what I hear about working conditions at Netflix. 

Meanwhile, my other question to the universe is this: What protection do consumers have from practices like this? My understanding was that if I wasn't using the service and hadn't given Netflix a new credit card, I couldn't be billed. But I've been paying for Netflix for several months, without watching any movies. 

A side note on Typepad: If you've read this far, you may have noticed that the text is in two different font sizes. I didn't do this on purpose--it's another result of using the new Typepad compose editor. And I can't find an icon that allows me to choose the font size. Argh. 

HIPAA, Shmippa ...

If you're like me, you didn't know what the term HIPAA (pronounced "hip-a") meant until you had cancer.

The first few times medical people used the word HIPAA in conversation with me, they used it as an excuse to say no to something I was asking them to do. As in:

"Oh, we can't give you those records. It would be a HIPPA violation."

Or:

"We can't discuss your mother's cancer on the phone without a signed release--that would be a HIPAA violation."

Or:

"No, you can't e-mail your doctor. That would be a HIPAA violation."

The woman who handled my medical bills for several years, Kelly, needed a signed release from me for each health-care provider and insurance company before they would talk to her about my medical bills. And, of course, they needed a new one every calendar year. This meant a lot more work and hassle for Kelly and for me, of course.

So for a long time I figured that HIPAA was something hospitals and medical centers dreamed up to help them give patients the run-around.

Whose Privacy?
You may still not know what HIPAA means--and that's OK--but you probably have figured out that it has something to do with patient privacy. Your cancer center probably has notices on the wall about how hard the staff is working to protect your privacy.

But meanwhile, all sorts of privacy violations are happening right, left, and center.

I once had a social worker (at the Seattle Cancer Care Alliance) notice me when she got in an elevator at SCCA and say, "Oh, Jeanne, your cancer is stage IV, right?"--in front of a whole elevator-full of folks.

Earlier, she and I had had a couple of conversations about financial assistance, and when she saw me in the elevator, she just blurted this out. A HIPPA violation? You bet.

Did I report her? Nah.

I had a much more serious HIPAA violation happen at SCCA several years ago, and I DID report that one, and took it all the way to the Office of Civil Rights, which oversees HIPAA, only to have them soft-ball their findings. So I don't have a lot of faith in HIPAA.

My point here is just to document HIPAA violations as they occur--as a way of holding cancer centers accountable.

Security at the Fax Machine
Here's another one, also from SCCA.

A couple of years ago, an oncologist whom I saw briefly after Dr. Livingston left SCCA for Tucson decided that I should see a shrink. After my appointment, he faxed his report--which said I was just fine, thank you very much--over to my regular therapist, and ... wait for it ...

Along with my report, my therapist received a psychological evaluation of ANOTHER PATIENT.

Unbelievable.

Whoever faxed the report faxed this other patient's report along with mine. We considered reporting it, but in the end my therapist just tore it up and threw it away.

Whose Got My Records?
Still at the fax machine, Teri, the Cheeky Librarian, mentioned in an e-mail this morning that a copy of her records had been faxed to the wrong doctor, a former primary-care doctor of hers, I believe.

She asked her doctor why her records were sent to this doctor, and says of his reply: "He hasn't a clue. So much for HIPAA, and medical records confidentiality."

My all-time favorite HIPAA violation is this simple one, also from SCCA (this one has been fixed, by the way):

Patients pay to park at SCCA, but if you have a sticker, you pay a reduced rate. In order to get a parking sticker, however, you had to sign your name on a clipboard that was lying on the front reception counter at the cancer center.

So anyone else who came in and wanted parking validation--or who just happened to stop at the front desk--could see who else had been there that day and could assume that anyone whose name was on the page was being treated for cancer.

HIPPA violation? Oh yeah.

(By the way, I used to sign "Bill Clinton." No one ever noticed.)

Read more:

HIPAA Violations at Swedish

E-Mail Your Doctor?

@ Jeanne Sather 2008.

More On HIPAA, and Marketing Cancer

The HIPAA violation at Swedish pales next to the problems I had at the Seattle Cancer Care Alliance. I keep meaning to write that story, but other things get in the way.

Another thing I've been meaning to point out is the fierce competition between the two largest cancer centers in Seattle, SCCA and Swedish. I've been a patient at both and I worked for SCCA's marketing department for years as a freelance writer, so I've seen the marketing of cancer from the inside.

That's why I was so amused (but not surprised) to see that Dean Forbes, who handles media relations for SCCA, was reading my criticisms of Swedish on my blog. See his comment on the post 15 Phone Calls.

Don't worry Dean, I'll be writing about SCCA soon.

HIPAA Violations at Swedish

Swedish Cancer Institute, where I have received some of my care, has put me on its fund-raising mailing list.

And I’ve been getting letters, from the head of the cancer institute, the same Dr. Einstein who never answered MY letter; from Linda Hohengarten, director of oncology nursing; and—the gloppiest one—from Janet D. True, the chairman [sic] of the Swedish Medical Center Foundation.

How did the Swedish Medical Center Foundation get my name? The Cancer Institute gave it to them.

It seems to me that putting my name on a list of patients and sending it over to the fund-raising arm of the institution is a violation of my patient privacy.

I did not give Swedish permission to pass on my name and identify me as a patient, nor did I sign ANYTHING that said I wanted to be the target of these fund-raising letters.

Especially from an institution as unresponsive as Swedish.

This is the cancer center where I had to speak to 15 people to get the answer to a simple question about my bill. (See 15 Phone Calls.)

This is the cancer center where, when I wrote a letter to the director about this problem, he never responded.

This is the cancer center that can’t straighten out a billing problem that I’ve wasted hours on over the past couple of months. (See Medical Billing Woes.)

The very same cancer center where, when I complained about problems in the treatment room—nurses not washing their hands as they went between patients, nurses not double-checking chemo drugs before starting IVs, and more—my doctor suggested I find another doctor.

And they want me to give them money? I’d be laughing, if I weren’t so mad.

Time to pull out my HIPAA file and fire off a letter to the Office of Civil Rights, which is in charge of HIPAA violations.

I think I’ll also send letters to Dr. Einstein (again!), Nurse Hohengarten, and Ms. True, explaining why I won’t be donating to this year’s annual campaign.

@ Jeanne Sather 2007.