The Assertive Cancer Patient

Medicare Billing: This Is Insane

Do you read your medical bills? How about the "explanation of benefits" from your health insurance company? Granted, those latter are more like a "confusion of benefits" than an explanation, but let's let that go for now. 

I don't generally read my medical bills, because they make me crazy, and not just because of the incomprehensible explanations of what I owe and why. I generally stack them up for about a month at a time--to avoid stress--and then open them all at one go. 

Things are even better now that my friend Kelly is back on the case, sorting out my medical bills for me. This is a HUGE stress-reliever, and if you are handling your own medical bills I strongly suggest that you hand them off to someone you trust. 

However, sometimes I get curious about what things cost, like the recent round of scans and tests that I've had. Well, two recent rounds of tests and scans. Or maybe a month of on-going tests and scans. Anyway, I've had a lot of tests/scans and I was wondering what they cost. 

So I opened my most recent Medicare statement. 

And I was shocked. To cut to the chase, Medicare is only paying about 10 percent of any given bill. How is this possible? I'm going to find myself fighting Medicare on behalf of my providers if I'm not careful. 

For example, I had a brain MRI at Northwest Hospital on May 12. The total charge was $3,416.50, including the $22.50 for the contrast. Of this, Medicare paid only $370.45. 

Medicare says my deductible/coinsurance will be $217.93, but I qualify for charity care at Northwest Hospital (and I've already done the paperwork), so I won't be paying anything. 

And I have secondary insurance with WSHIP, the Washington state high risk pool for people who are considered uninsurable, so I could sift through my bills and see what, if anything, WSHIP paid on this claim. 

Found it. WSHIP paid the $217.93 that was supposed to be the coinsurance payment, and that's it. And the hospital will have to eat the rest--about $2,800. 

So now we get why medical providers refuse to treat Medicare patients.

As I said before, this is insane. 

Oh, a couple more random numbers:

One dose of gemcitabine, that hateful chemo drug, cost $2,088 at Northwest, plus delivery costs of $622 ("injection") and $153 ("therapy"), much cheaper than at the two cancer centers where I was treated in the past. 

Both Swedish Cancer Institute and the Seattle Cancer Care Alliance charged me about $2,000 in delivery costs--in addition to their marked-up charge for the drugs--each time I went in for chemo. That's more than twice the charge at Northwest. 

See: The True Cost of Herceptin for the details. 

See also, Jeanne's Diary Chapter 10: The Insurance Fiasco

(Note that this is about 10 years old.)

@ Jeanne Sather 2009. 

Medical Bills and Bankruptcy

This news story, which says that medical bills are responsible for 60 percent of the bankruptcies in the United States, will be met with a heartfelt "DUH!" by most of my readers. After all, we are living this. 

But policy makers please take note: According to Reuters, which was reporting about research done at Harvard and at Ohio University, 75 percent of the bankrupt families HAD HEALTH INSURANCE. 

But they still couldn't afford the cost of a major illness. 

I've been living with cancer for almost 11 years, and I have had health insurance of one kind or another for all of that time. But I'm out of money. I don't know yet if I will file for bankruptcy. I'm trying to keep my house if at all possible, but I can't pay the mortgage right now. 

That's the reality of life with cancer. 

Read the story: Medical Bills and 60 Percent of Bankruptcies

Read more on this blog: Medical Billing/Insurance Woes

@ Jeanne Sather 2009. 

Good Story in the NY Times

Yesterday's New York Times had a good story about cancer patients struggling to pay for chemo drugs that come in pill form. 

I've been living that story ever since I went on Medicare, because Medicare Part B won't pay for Tykerb--which is a pill--as it does for my Herceptin, gemcitabine, and other cancer drugs. 

The monthly copay for Tykerb is $1,600, more than my monthly income of $1,000 from Social Security Disability. 

One twist to the whole thing, which the NYT missed in its story, is that Medicare Part B WILL pay for the oral form of drugs that come in both pill and IV form, because the pill form is cheaper. 

But if the drug comes only in pill form, as does Tykerb, the patient is out of luck. 

One piece of good news in the story that I hadn't known: 

Oregon enacted in late 2007 the nation’s first state law requiring insurers to provide equivalent reimbursement for oral and intravenous chemotherapy drugs.

... Several other states, including Colorado, Hawaii, Minnesota, Montana, Oklahoma and Washington, are now considering similar legislation.

Now I need to find out who is behind this legislation in Washington state--maybe things will change before my stockpile of Tykerb runs out!

Read the story: As Pills Treat Cancer, Insurance Lags Behind

@ Jeanne Sather 2009. 

Personally, I Shop at Bartell ... Boycott Walgreen

It looks like it's time to organize a boycott of the Walgreen drugstore chain, folks. 

Reuters reported yesterday: 

Walgreen, one of the largest U.S. pharmacy chains, is to withdraw 44 of its 111 pharmacies in the state of Washington from the Medicaid program. Medicaid provides health insurance to low-income individuals.

I happen to live in the state of Washington, and while I'm not on Medicaid yet, I'm poor enough to qualify, so it's only a matter of time (oh, and paperwork, don't forget the paperwork. That's the real reason I'm not on Medicaid). 

Walgreen's reasons?:

Cash-strapped Washington state plans to insist on cheaper, generic drugs for low-income Medicaid clients whenever available and equivalent to brand-name drugs, and is also cutting the rate of reimbursements on all drugs to pharmacies which supply them.

That's just great, make things more difficult for the poorest of the poor. And the sick, too. The poor and sick. Walgreen--you should be ashamed. Oh, and did I mention, Walgreen had fiscal 2008 sales of $59 billion-with-a-B.

Now, as I mentioned in the headline, I already shop at Bartell, which is a local chain. And one that doesn't sell my prescription drug information to drug companies. 

Don't know what I'm talking about? See: Drug Marketers: Invading Our Privacy?

Of course, when Walgreen started on its quest for world domination, it promised us better service and whatever. See: Walgreen on BNET

No word yet on whether or not Walgreen sells its customers' personal data and prescription drug histories to the drug marketers, but I'll be checking on that.

In the meantime, boycott Walgreen, please. And tell them why you're not shopping there anymore. 

Read the Reuters story: Walgreen to cut Washington state Medicaid business  

A footnote: You know, back in the days when I worked for Reuters (as a stringer), the powers that be insisted that we call the place REUTER. No final S. Never mind that everyone else in the known world called it "Reuters." So when did the switch happen? Does anyone know? 

 

@ Jeanne Sather 2009. 

From the E-mail Box

Teri, the Cheeky Librarian, e-mailed me about Wellsphere last night. Apparently, she got the same e-mail that many of us have received--asking us to let Wellsphere use the entire contents of our blogs: FOR FREE. 

I declined the offer, and I'm sure Teri will too. 

For more on Wellsphere, see: 

Wellsphere: Use the Contents of My Blog for Free? (I Don't Think So...)

Health Central Buys Wellsphere: Let the Exploitation Begin!

Recycling Drugs

Ellana, who is a regular reader of my blog, sent me info on a place in Reno that will take unneeded meds and pass them on. 

It's a clinic that serves the homeless, so it looks like they will take medicines other than just cancer drugs. Here's the link: Health Access Washoe County

I'm going to contact them and find out more about what they do and about how to donate meds. 

A majority of states have passed legislation to establish drug repositories, but the majority (of that majority) still don't have drug repositories up and running. I've written quite a bit about this issue, and you can find the posts here: Recycle Drugs

Glamour Cancer Blog

I saw a small spike in my readership stats for the past couple of days (about 800 page views a day, up from my typical 600 or so). Then I got an e-mail that explained why. 

A cancer blogger on the Glamour magazine Web site linked to my blog, and that sent a few new readers my way. 

I was, I admit, surprised that a magazine like Glamour HAS a cancer blogger (after all, what could be less glamourous than cancer? I mean, let's be honest here), so I e-mailed her and asked a few questions. Her name is Erin, and she was already working at the magazine when she was diagnosed with cancer--at age 23, yikes!--and was asked to write about it. 

Here's the link: Life With Cancer

A Helpful Reader

A new reader sent me a donation (thanks!), and also wrote and offered to help readers who might be having trouble with their health insurance and prescription drugs--wouldn't that be, like, most of us?

Here's what she had to say:

 I work in an oncology clinic pharmacy. I have been a pharmacy technician for six years.  Our pharmacy just opened six months ago and I am the only technician.  

Unfortunately, I know all too well about the insurance companies and their prior authorizations being denied and the extremely high copays for patients for the drugs the insurance will actually cover.  

I just wanted to offer any support or information to you, if I can ever help. 

You seem to be know the game pretty well though.  I am not suffering from cancer or even ill,  and I have a hard time dealing with these manufacturers and insurance companies everyday. But I do know ins ands outs of most of the copay assistance programs. Also if any of your subscribers have any questions regarding their insurance requiring them to use mail order they can usually get a one-time override at a local pharmacy ;so they can go ahead and start their therapy. 

I actually have two patients right now who are trying to get Tykerb; one of which I am getting copay assistance for through GlaxoSmithKline's Committment to Acess and the other is a Tykerb PA which was denied because it was not used with Xeloda. Let me know if there is anything I can do to help.

 

You can bet the next time I get a drug question from a reader I'm going to ask for help. If you do have questions you'd like to ask our expert, just send them to me and I'll forward them on: jeanne.sather@gmail.com

@ Jeanne Sather 2009. 

Northwest Hospital: Now THIS Is Nice ...

As I mentioned in an earlier post today, I had a voicemail message from an administrator at Northwest Hospital, where I go for cancer treatment, saying she wanted to talk to me about something I'd written on my blog.

I assumed it was about the posts I've written about being sent to collections, or possibly about the person in the billing department who called the friend I had listed as an "emergency contact" when she thought I wasn't paying off my bill fast enough ... That tactic, of course, is designed to embarrass me. 

I also assumed, I will admit, that this person was going to be defensive about the hospital's behavior, but NO. 

The woman I talked to, Janet Walthew, herself a cancer survivor, apologized. Amazing. 

She said my bill should not have been sent to collections, and she said she'd call the collections agency, Renton Collections, to make sure that they forwarded my charity care application to her. 

Wow. How nice. So thanks, Northwest Hospital. 

We'll see what happens with the charity care application, but I certainly qualify for a write-off. 

See: Applying for Charity Care? Be Careful

Would it be rude to suggest that the behavior of the folks at Northwest Hospital is, at least in part, motivated by the lawsuit now in the courts against one of their collections agencies? I'd like to think not ... 

See: Charity Care in Washington State

@ Jeanne Sather 2009. 

What Do Your Drugs Cost?

I'm going to be doing some more lobbying, this time on the national level, to help get legislation passed that would bring generic forms of wildly expensive cancer drugs (among others) to market sooner. 

Of course, Big Pharma, one of the most powerful lobbying groups in the world, is doing everything it can to prevent this, trotting out all the usual scare tactics--"We'll stop developing new drugs if you won't let us have our obscene profits" and the like.

If you are a cancer patient, you probably don't need convincing that cancer drugs are too expensive. You already know that a major illness, like cancer, is the quickest route to personal bankruptcy. (Well, maybe second only to a gambling addiction.)

Anyway, as part of educating myself to take part in this lobbying effort, I talked on the phone this morning with a woman named Sarah Rimmington, an attorney who works for Essential Action's Access to Medicines Project. Basically, she's a lobbyist, but for the good guys. 

One thing that always annoys me is that the mainstream press typically doesn't publish accurate information about what patients pay for cancer drugs. That's because they get this info from the drug companies, who typically lowball the prices when talking to the press. 

So Sarah sent me a list of the 20 most expensive "biologic" drugs, many of which are cancer drugs or are used to treat cancer side effects. I said I would ask my readers to give me the annual cost of the drugs that they take. 

So please take a look at this list and then let me know which of these you get. I also need you to provide documentation of the prices. (This can be a bill from your cancer center--just black out any confidential info. and mail it to me.) Also let me know if we can use your name and state in lobbying efforts, or if you would rather we not use your name. 

The prices to the right are supposedly the annual cost to patients, as of 2006. 

Aranesp* $5,300 (Note: I think this is the cost PER SHOT, but I'll look it up.)

Rituxan $32,500 each eight weeks 

Procrit* $5,500

Herceptin $36,000 for six months (Herceptin cost my insurance $78,000 in 

2006, not counting the cost of delivering the drug)

Epogen* $5,500

Neulasta* $17,500

Avastin Up to $28,500 for eight weeks (I've gotten Avastin too, and have 

the bills somewhere. I'll look up this one)

Neorecormon* $4,500

Neupogen* $11,000

The drugs with the * are not cancer drugs per se. They are drugs used to treat cancer side effects, most typically low blood counts caused by chemo. 

Note that nine of the 20 most expensive biologics in 2006 were drugs used to treat cancer. We cancer patients have a huge stake in this debate. 

Tykerb, one of my drugs, should be added to this list. It came on the market in 2007.

Please e-mail me with the prices of any of these drugs that you take: jeanne.sather@gmail.com

Thanks. 

@ Jeanne Sather 2009. 

Applying for Charity Care? Be Careful

Washington state has a charity care law that requires hospitals (but not individual doctors or, weirdly enough, cancer centers) to write off the bills of people whose income is below 200 percent of the federal poverty level. 

That, sadly, includes me. 

Charity care has also been in the news recently, because hospitals are not telling their patients that they might be eligible for it. These are the same hospitals who are so quick to send their patients to collections when bills are not paid. Never mind that some of us have cancer and other serious illnesses, and might be having trouble paying our bills, both in the financial sense and in the "how much energy do I have today?" sense. 

Anyway, Northwest Hospital sent me to collections for a bill that I was slow to pay because of some mixups, which I've written about earlier, and despite the fact that I was sending them $50 most months. 

After the bill went to collections, I received a letter from the collections agency, Renton Collections. I wrote to them, telling them I couldn't pay the bill, and, amazingly enough, they sent me the application for charity care for Northwest Hospital. (There is a backstory here, but I won't get into that now.)

So as I was filling out the application, I noticed that it asks how much money I have in my bank accounts. 

Two issues here: 

1. Charity care is supposed to be based on income, NOT assets. (Not that I have much money in my bank account anyway.)

2.  The form asked me to give the name of my bank and the bank account number. Why do they need that?

Well, a lawyer friend of mine pointed out that if I give my bank account number on a form that is going to the collections agency, the hospital could deny my request for charity care, and then the collections agency would have my bank account number and could garnish it for the money that I supposedly owe.

Pretty sneaky, huh?

So be careful filling out these applications. Don't give any information you wouldn't want a collections agency to have, whether you are mailing the charity application to a hospital or not. 

Just for the record, I didn't give them my bank account number. 

Read more:

Charity Care in Washington State

Charity Care Expose: Good Job, Seattle Times

And in the Seattle P-I:

Harborview Checks on Charity Patients' Credit

A footnote: I received a phone message last week from a woman who said she was the head of the patient financial services office at Northwest Hospital, and that she wanted to talk to me about something that I'd written on my blog. 

She didn't identify herself clearly by name--I couldn't catch more than her first name, Janet, on the message--but perhaps this is the post she was calling about: 

Be Careful With That Personal Info

I'll call her back today and find out. Stay tuned. 

@ Jeanne Sather 2009. 

More From Megan

Yesterday, I had an update from Megan--she's still fighting, but the news is not good.

Her radiation oncologist, the doctor who had recommended stereotactic radiation to treat her brain mets, has what is called a "peer-to-peer" review with the local California Blue Shield medical director, who is an ear, nose, and throat specialist, NOT an oncologist. He's hardly a "peer."

Megan's oncologist was told that Blue Shield's decision not to pay for the procedure she needs would stand, so her next step is to appeal to the California State Department of Managed Care. (I didn't know there was such an animal, but anyway ... )

Mind you, this is a woman with stage IV disease--doesn't she have better things to do, like focusing on getting well?

Read my earlier post: I've Run Out of Words for OUTRAGE

@ Jeanne Sather 2009. 

I've Run Out of Words for OUTRAGE

Yesterday, a 36-year-old woman who has metastatic breast cancer e-mailed me and asked for my help. 

Her story is all too common, which is why the head on this post is "I've run out of words for OUTRAGE." However, even if I've run out of ways to express my outrage, I haven't run out of the outrage itself, thank goodness.

Here's her story: Megan Jones is her name. She is 36, as I said, and lives in Pasedena, California. She has metastatic breast cancer, which has spread to the liver, bones, pleural cavity, and brain. Her cancer is HER2neu-positive like mine.

She has been on Herceptin, plus Taxotere and carboplatin. And a recent PET scan showed that this regimen has reduced the lesions in her liver, and stabilized the ones in her bone and body. However, the brain mets are growing. 

So her doctor wants her to go on Tykerb (another of my drugs) and also have stereotactic radiation to her brain.   But her health insurance plan is REFUSING to pay for either the Tykerb or the stereotactic radiation to the brain. The insurance plan is California Blue Shield, and they should be ashamed of themselves. 

Megan writes, "... my insurance co. has denied Tykerb (since I'm on Herceptin and not Xeloda) and they've denied stereotactic brain radiation--the kind that can be done again and again and pinpoints the lesions--but they've approved whole brain radiation (which I could only receive once, and has higher risk for cognitive impairment)."

So now we have health insurance plans--NOT DOCTORS--deciding what treatment patients with metastatic cancer should receive? 

Megan asked for my help, and I suggested that she challenge her health insurance company's decision. She should ask her doctor to write a letter explaining the medical need for Tykerb and the medical need for the radiation treatment he or she is recommending. 

I suggested she ask her doctor to fax the letter, to speed things up, and that she get a copy and keep a file of all correspondence. Plus notes on any phone conversations. 

An aside here, when you are dealing with a health insurance plan, get EVERYTHING in writing. Something said on the phone can always be denied later. 

Then, I said, if that doesn't work, I think she should make the biggest stink she is capable of. And I plan to help her do that. 

I mean, here is a woman who is 36, who has a life expectancy, I would guess, of 40 or 50 years, and her insurance company wants her to get a cheaper treatment than what her doctor thinks is best? 

That sound you hear is me, breaking plates to get rid of my anger!

@ Jeanne Sather 2009.