The Assertive Cancer Patient

Hospital News

First, a definition.

I always thought, with apologies to Robert Frost, that a HOSPITAL was a place where, when you were sick and had to go there, they had to take you in.

But I’ve been following the medical news lately, and it appears that my definition is wrong.

Along with health insurance companies who refuse to insure the people who need them (that is, sick people), come hospitals who treat sick people who have no health insurance as pariahs.

Just last week, a hospital group suggested that the cure for the nation’s 47 million people who are without health insurance is, wait for it ...

MANDATORY HEALTH INSURANCE.

That’s the way to solve the problem: pass a law saying that everyone must have health insurance, and then fine people who don’t.

The Federation of American Hospitals, the group that put out the report, of course doesn’t want its member hospitals to have to provide care to people who have no health insurance. (The ranks of the uninsured are growing, and they still get sick … and still go to hospitals.)

I understand that this makes it difficult for hospitals to balance their books, but this is not a solution. Most people who don’t have health insurance don’t have it because they can’t afford it.

Read the story: Hospital group pitches universal insurance

And then, closer to home, comes the headline at the top of page one in yesterday’s Seattle Post-Intelligencer: Harborview [hospital] checks on charity patients’ credit

The story says that Harborview Medical Center has been checking credit reports of people who ask for financial assistance, AKA “charity care”—without telling them that they are pulling their credit reports.

The hospital says that the credit report helps them determine if people are lying about their income, but that is ridiculous—a credit report shows how much DEBT you have, not how much income.

Read the story: Harborview checks on charity patients' credit

As a “charity patient” myself (actually my cancer center rejected my request for financial assistance), I’ll have more to say in the next few days on the issue of charity care.

Home is the place where, when you have to go there, they have to take you in. -- Robert Frost

@ Jeanne Sather 2007.

How Cancer Patients Spend (Waste) Their Time: 2

After yesterday morning's little adventure (See, The (High) Cost of Cancer Treatment: 2) during which I wasted two hours on the phone, much of it on hold, making a total of 15 phone calls to get an answer to a simple question about one of my cancer center bills, I probably should have spent the morning in bed.

But I'm scheduled for a PET scan at Swedish (my new cancer center) on Thursday, and I needed to pick up copies of my two most recent PETs from my "old" cancer center to take with me.

The three people I talked to on the phone, to establish what I needed and where to get it, all suggested hand-carrying the CD from Cancer Center A (the University of Washington Medical Center, DBA SCCA) to Cancer Center B (Swedish Cancer Institute). If I asked to have the records sent, they said, there was a better than even chance they would go astray.

After my experiences on the phone, this made sense. And I try not to ignore good advice. So I called Frank at the UWMC and asked to have the CDs made so that I could pick them up. "We don't make them until you come in," he said, "and it takes quite awhile since the files are so big."

Okaaay.

So off I went this morning to the basement of the UWMC, requested the records, and sat in the waiting room for more than a hour while they were made. The technician who was handling this for me was very nice, and even came out to give me an update after about 45 minutes.

Once he turned over the CDs, after another 30 minutes' wait, I asked why they made patients come in and wait for them, rather than burning them in advance. "A lot of patients don't come in and get them," was his reply.

OKaaay. And the problem with that would be?

However, I've been doing this for a long time, and it clearly was not the technician's fault that this policy had been established, so I just thanked him and left, paying $6 for parking on my way out. (If I could have just swung by and picked them up, I could have parked for free.)

And we cancer patients have nothing better to do with our time, right? Like smell the tulips, walk our dogs, clean our houses, hang out with our kids, volunteer, and all the other things I have on my agenda for the day.

Maybe I should bill UWMC $75 (my hourly rate for editing services) for my time?

@ Jeanne Sather 2007.

The (High) Cost of Cancer Treatment: 2

Or, How Cancer Patients Spend (Waste) Their Time: 1

As I've mentioned elsewhere, I recently changed cancer centers. After eight years with the University of Washington Medical Center and the Seattle Cancer Care Alliance, I switched to the Swedish Cancer Institute.

When I wrote The (High) Cost of Cancer Treatment: 1, I reported that my bill from SCCA for September 1, 2006—for three drugs, Herceptin, Avastin, and Zometa—was for $20,052.19.

That made me wonder what my new cancer center was charging me for the same treatment.

So I pulled out an explanation of benefits from WSHIP, my health insurance plan, for December 21, 2006.

On that date, I received the same three drugs that I was getting at SCCA (Herceptin, Avastin, and Zometa) plus another drug Aranesp, that I believe was to boost my low red-cell count.

Swedish billed my insurance company $43,681.23 for that one afternoon's treatment, plus an additional $102 for my brief visit with my doctor on that day.

Well, this surprised me, since it was TWICE the amount that SCCA billed for the same treatment, except for the Aranesp, which I do not get routinely. But at first I couldn't figure out the bill because there were four line items for drugs and none of them was named.

Four items with "drugs required detailed coding": one for $22,739.31, one for $9,599.10, one for $5,253.00, and one for $3,151.52. I thought maybe there was an error in the bill, maybe I had been billed twice, or that the $22,000-and-change item was the total for the three drugs I usually get ... Who could tell?

So, to the phone. I called Swedish and asked for the billing department.

This is where the story gets funny, or pathetic, depending on your point of view.

It took me 15 phone calls--that's right, 15--to get an answer to my billing question: What drugs did I receive on December 21 and how much was I charged for each of them?

I took notes on the back of the bill.

By the time I was at Phone Call No. 5, I started telling each person I spoke to how many people I had already talked to.

Phone Call No. 5 was to Mary in "clinical relations." Mary couldn't help me, but she was very nice and gave me three names and numbers of people who she thought might be able to help.

And so it went, up to Call No. 14, when I spoke to Jackie in "pharmacy billing." At first, Jackie said she couldn't help me, that I should call the regional billing office. But when I explained that I had already talked to them (Call No. 4) and that they were unable to give me the information I was seeking, she took my number and said she would call me back.

Which, amazingly, she did within a few minutes (Call No. 15), and she was able to give me the names of the four drugs I had received on that date plus the prices of each.

So, having survived (barely) that ordeal, I was left to wonder why one cancer center charges $9,496.47 for one dose of Avastin and another cancer center in the same city charges $22,739.31.

The same thing for the Herceptin. SCCA charged me $6,254.95 for one dose of Herceptin, and Swedish charged me $9,599.10.

Of course, my insurance company did not pay Swedish that amount. The grand total for one afternoon's treatment was $43,681.23, and my insurance company paid $22,644.29. Because my insurance has a preferred provider relationship with Swedish, that's it. The rest of the bill is discounted and I don't have to pay it.

I wish I had a great punch line to end with here, or a "kicker," as we called it in journalism school, but I don't. I'm sitting here on the couch marveling at the ways I spend my time, now that I have cancer.

Read: The letter to Swedish Cancer Institute's executive director

@ Jeanne Sather 2007.

Herceptin in the United Kingdom

I received an e-mail the other day from Mary Finnigan, who lives in Bristol and who is being treated for breast cancer with Herceptin.

Two things that Mary said really amazed me:

• She gets her Herceptin treatments at home.
A nurse comes to her and brings the whole IV set-up. “This means I can carry on at the keyboard while attached to a drip,” she says.
(When I think of all the hours I have wasted in the treatment center, not to mention the exposure to germs every time I go in! I don't know of anyone in the U.S. who gets their IV treatment at home. I'm jealous.)

• Herceptin costs less in the UK than it does in the United States.
Mary says that Herceptin in the UK costs £1,000 per dose plus the cost of delivering it. I did the math on that, and that is less than $2,000 per dose. My cancer center charges me $6,200 and change, per dose.

Well, that’s another question for Genentech, maker of Herceptin: Why are they charging less for the drug in the UK than they are at home?

Mary’s E-mail
Here is Mary’s e-mail in its entirety.

Hi Jeanne,
I reached your blog via my Google Alert on Herceptin.

Read with dismay your financial problems in the U.S. Made me go down on my knees and thank our much-maligned UK National Health Service.

Since I was diagnosed with early stage Grade 3 HER2, node positive breast cancer in March last year I have received 5 star treatment from the cancer care programme in my home city of Bristol. I do not have to worry about the cost.

This is a huge bonus -- judging by the experiences of fellow travelers in other countries. At present I am receiving Herceptin every three weeks, delivered to me by Health Care at Home, a private company which is paid by the NHS.

This means I can carry on at the keyboard while attached to a drip. Feels like a big luxury. I also get the exclusive attention of a senior nurse for the whole process. All my treatments -- mastectomy, chemo and radiotherapy have been planned around my work and leisure schedule. My longest waiting time for any appointment or treatment was one hour -- and that has only happened twice in 11 months.

I see the same Consultant Clinical Oncologist at every visit, for as long as I need to. He answers my queries via e-mail and is a very pleasant, professional, open-minded person.

Having said all this two issues do figure in the picture:

1. I am an assertive, informed, middle-class woman who has worked as a journalist for her entire adult life.

2. The resources that are being directed at cancer care these days are contributing to squeezes in other areas of the NHS. This undesirable consequence is highlighted regularly in the UK media. In my view all of us who are fortunate enough to be eligible for Herceptin should start a campaign targeted at Genentech and Roche in order to get the astronomical cost of this drug substantially reduced.

Please subscribe me to your blog. It is the best one I have come across so far during my Herceptin research.

Warm wishes,

Mary Finnigan

Field Trip No. 2: Lobbying in Olympia

I get my health insurance through a very expensive plan in Washington state, a high-risk pool for people like me who health insurance companies refuse to insure.

This plan, the Washington State Health Insurance Pool, or WSHIP, has a couple of problems: One is the high premiums, which are determined by age and not prorated by income. So, even though my income (from Social Security disability and child support) is only about $2,600/month, I pay more than $700 a month for my health insurance premium. Ouch!

Because the premiums are so high, many, if not most, of the people this plan was designed to insure cannot afford it, and they are without health insurance.

The other big problem is that there is a cap on benefits of $1 million. Now, that may sound like a lot of money, and it is, but it doesn’t buy a lot of health care in today’s market, especially cancer care.

I have been on the plan only since 2003, and as of February 19, WSHIP has paid out $740,756.76 toward my lifetime max of $1 million.

My care costs more than $300,000 a year, or about $30,000 a month, so I calculate that I will hit that cap before the end of the calendar year.

I applied for Social Security disability in January 2006, so I should be eligible for Medicare starting in January of next year, but there is a gap there of several months (at $30,000/month) that I have no way to bridge.

I’m not poor enough for Medicaid (incredible, but true). I’m also not poor enough for Basic Health, the other state plan designed to help the otherwise-uninsured working poor.

Read more:

So What to Do?

WSHIP Is a Failure

@ Jeanne Sather 2007.

Feb. 18-24 Is National Blank Greeting Cards Week.

So What to Do?

What to do? Well, as a start, I took myself off to Olympia yesterday, to lobby my state lawmakers.

I tagged along with a grassroots organization called WashingtonCAN, which was there to lobby for better health insurance coverage for all, and also for immigration reform.

In the health care area, WashingtonCAN’s priorities for the 2007 legislative session include health insurance for all children. If it passes, House Bill 1071 would provide health insurance to all children in the state by 2010. Nexy year would be better, but OK, I certainly support this issue.

WashingtonCAN is also supporting Senate Bill 5658, which would make health insurance more affordable for small businesses.

And finally, we lobbied for House Bill 1569, which is intended to reform the private health insurance industry by making it harder for health insurance companies to “cherry-pick” healthy people to collect premiums from and leave the sick folks like me to scramble as best we can for coverage.

The details of this bill, which is probably my best chance of getting the $1 million cap on WSHIP removed or raised, seem to be in flux, so I am not sure that it would solve my problem, even if it passes, or if it would offer a solution in time.

But what the heck, I lobbied gamely for it anyway.

Read more:

My Legislators

@ Jeanne Sather 2007.

Feb. 18-24 Is National Blank Greeting Cards Week.

My Legislators

I live in Washington state’s 43rd district, so the people who represent me in Olympia are Representative Jamie Pedersen, Representative Frank Chopp, and Senator Ed Murray.

Their political literature has been cluttering up my doorstep for some time now, left by little elves during the night, but I had never met any of the three in person.

We managed to pull Representative Pedersen out of a committee meeting and I spoke to him in the hallway for a few minutes.

I told him that I would apparently have the honor of being the first person in the state to hit the $1 million cap on WSHIP, and I hoped that HB 1569 might provide a solution to my problem.

He seemed sympathetic, and listened, and seemed to hold up pretty well when confronted by a seriously ill person asking for help. I give him brownie points for that.

I didn’t get a chance to talk to Chopp or Murray, so I sent them e-mail (using my laptop and the state wireless network in the Capitol buildings—I love technology), explaining my situation.

I also sent an e-mail to Petersen this morning to follow-up.

So we’ll see. There are 600,000 people in Washington state with no health insurance. Not to be too pessimistic, but I’m not sure if my legislators care if one more joins their ranks.

Read more:

Other Options

@ Jeanne Sather 2007.

Other Options

Assuming I do end up without health insurance before Medicare kicks in, I have a couple more options, other than throwing myself on the ground, kicking and screaming, in public places.

One is to talk to the cancer center where I receive my treatment to see if they will continue to treat me even if I can’t pay for it. I plan to write this letter in the next day or two.

They may offer me charity care (more paperwork, ugh), or a payment plan, or both.

Another option is to go to Genentech, hat in hand, and ask to receive the drugs I need for free, since I can’t pay for them. The cancer center may actually handle this request for me, I need to ask.

Meanwhile, even though I really enjoyed myself lobbying in Olympia yesterday, it was a long day. And I’m exhausted.

Read more:

E-mail to Rep. Jamie Pedersen, 43rd District

The (High) Cost of Cancer Treatment: I

Herceptin

@ Jeanne Sather 2007.

Feb. 18-24 Is National Blank Greeting Cards Week.

E-mail to Rep. Jamie Pedersen, 43rd District

Hi--I'm the woman who spoke to you in the hallway yesterday from WashingtonCAN, lobbying for better health insurance coverage for all.

As I told you, I have metastatic breast cancer (my cancer spread to my bones five years ago) and I have health insurance through WSHIP. Unfortunately, my treatment is very expensive and I will hit the $1 million lifetime max for coverage under WSHIP before the end of the year.

I apparently will be the first person to hit the cap, and then have no health insurance, but I am sure there will be many more. A $1 million cap for the high-risk pool is not reasonable given the cost of medical care today.

It seems like HB 1569 MAY provide a solution to my problem, if the cap on WSHIP is removed or raised. I'd appreciate hearing back from you or your office to learn if there is anything you can do to help me keep my health insurance coverage in the high-risk pool.

Jeanne Sather

Note: I sent similar e-mails to Rep. Chopp and Sen. Murray, also of the 43rd District.

Feb. 18-24 Is National Blank Greeting Cards Week.

Field Trip No. 1: To Buy a Hallmark “Cancer Card”

The next time you’re browsing the card racks looking for just the right card to commemorate Auntie Mabel’s fourth divorce, take a look at the latest “Hallmark moments”—cards to send to friends undergoing chemotherapy, or struggling with depression or bulimia.

Can you imagine? “Congratulations on your cancer diagnosis!”

Actually, the cancer card says—note the rhyming verse— Cancer is a villain who doesn't play fair ... but it can't dim your spirit, and it can't silence prayer."

Ugh. Friends and relatives, take note, DO NOT send me this or any other Hallmark cancer card.

Hallmark has been a cultural icon of schmaltz for decades with its rhyming sentiments and ribbons-and-flowers view of life’s important moments.

I give Hallmark Brownie points for trying.

But with all due respect to the hordes of people who were clamoring for printed cards to send to friends or relatives who had been diagnosed with cancer, or who were dealing with depression or bulimia—this is the time for a blank card or a plain sheet of notepaper, one on which you write your very own words, by hand, from the heart.

February 24, 2007 Update

NPR did a short, uncritical piece called A Hallmark Moment. Is NPR slipping?

Feb. 18-24 Is National Blank Greeting Card Week.

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@ Jeanne Sather 2007.