The Assertive Cancer Patient

My Photo's in the Sunday Seattle Times

Carol Ostrom got in touch with me last week for a story she was writing about WSHIP, the Washington state health insurance pool, or high risk pool, which used to be my insurance plan until I went on Medicare. 

I have to say, Medicare makes WSHIP look good. In fact, it makes it look fabulous, but I was still amused to be asked to say something positive about WSHIP because I battled with them for years, and even lobbied in the state capitol to get the lifetime cap on benefits raised from $1 million to $2 million (We were successful.)

That was back in the day when my treatment was costing $300,000 a year, and I would have burned through my benefits in just a few years. I don't know what it costs now, to be honest. 

Anyway, here's the link to the story:

Health Care Law Will Alter High risk Pool

Here are all my posts about WSHIP: WSHIP

@ Jeanne Sather 2010. 

Being a Woman a Pre-Existing Condition?

Now, I don't have much respect for health insurance companies, having battled with them for something like 11 years now, but here is something that I missed, I'm embarrassed to say: Health insurance companies have been charging women higher rates when they buy individual polices, just because they are women. 

This goes beyond covering viagra for men so that they can enjoy sex in old age and refusing to cover birth control pills for young women, which would certainly help them enjoy sex without the fear of pregnancy ... 

One woman was refused health insurance because she had had a caesarean section in the past, which the insurance company considered a "pre-existing condition." The woman was told she would be eligible for insurance coverage if she had been sterilized. Pretty cold. 

Well, this has apparently all changed now with the new health care law, which forbids sex discrimination in health insurance coverage. 

That sound you hear is my two hands clapping. 

Read more: NYT: Overhaul Will Lower the Cost of Being a Woman

More on this blog: Medical Billing and Insurance Woes

@ Jeanne Sather 2010.

Bill Paying: I've Learned a Thing or Two

 Bill paying is really tough for me. This is one area of life where my chemo brain is all too obvious. 

I make stupid mistakes paying bills--forgetting to record the amount of a check in my checkbook, for example. Or even writing numbers wrong, something I would never have done BC (before cancer). 

So my strategy is to stack up all the bills in one place, and then, when I'm ready to pay them, I clear the decks and give the task my best energy--which means first thing in the morning--for a couple of days. I have a file box to sort the bills and other paperwork by categories, to help with end-of-year tax paperwork and similar things (like applications for financial assistance, or for charity care). 

I don't actually have very many regular bills, but I have ones that can take a lot of time and energy to deal with--medical bills, usually. I've ranted about that elsewhere, so won't rehash it now. 

One thing I have discovered, though, in my attempts to simplify the bill paying: You can deal with routine bills only once every two months, instead of monthly, and nothing very bad will happen. 

I discovered this by accident when I got behind. This was back in November, when I was hospitalized for eight days early in the month, before I had paid the bills, and then I was recovering at home and trying to get my strength back. 

By the time I got to the bills, it was December already. So I paid everything and got up to date. The only penalty was $15 to my cell phone company. 

January rolled around, and I realized that cancer was going to eat up the entire month. I still haven't paid January's bills, and it's almost February. I'm hoping to have the energy to deal with them next week, but I'm not worried.

Now, the reason this works is that the utility companies have many, many customers who are way further than one month behind on their bills. So they aren't worried about me. This strategy wouldn't work for someone concerned about a keeping a good credit rating, but I kissed my credit rating goodbye years ago, and I feel better for it. 

I'm never going to buy a house or a car again, so I don't need to worry about credit scores. 

Getting Help

I was thinking about this whole issue in the car today on the way to the cancer center, and I realized there is one thing I can do to make my life easier: I'm going to pass off the task of paying the routine bills--utilities, cell phone, that kind of thing--to Older Son.

After all, the boy is a graduate of the University of Washington business school. He can certainly handle my checkbook. And maybe seeing what we spend on water and electricity will encourage him to conserve a bit more. Ha! Or maybe not. But the bills will be paid on time. 

See also: Cancer EATS the Month of January!

One example of a medical billing nightmare:

Threats From Swedish

@ Jeanne Sather 2010. 

WSHIP: Prove My Eligibility TWICE in One Year?

This is insane--I just received another letter from WSHIP, the Washington State Health Insurance Pool, which insures people like me who the very-profitable nonprofits like Regence refuse to insure, asking that I prove my eligibility for coverage yet again. 

This is the second time in seven months. Isn't that just a bit insane? Hard to believe that WSHIP's goal is not to catch people who don't return the signed form on time by canceling their insurance, which is what happened last January. For a few days I sweated blood until I was able to get my insurance reinstated. I had sent the form in that time, but the first time WSHIP returned it to me, and the second time I sent it in, WSHIP lost it. 

So this time I'm mailing in the form registered mail so that WSHIP employees will have to sign for it and I will have proof that I mailed it in.

I am not going through this again. 

To WSHIP's credit, I did get a phone call this time, from someone who clearly identified herself as a WSHIP employee and who also said clearly what she was calling about, the eligibility form. That's a step up from last time, when I never received a call from WSHIP, although they claimed they called everyone who didn't return a form by the deadline. 

Oh, I tried to call twice this morning to let WSHIP know that my form is on the way, but--guess what?--I couldn't get through. The phone line was busy. No option for leaving voice mail. 

Read more: WSHIP

@ Jeanne Sather 2009. 

Not Sure WHO the Bad Guy Is ...

I went by the pharmacy at Northwest Hospital today to pick up a prescription for oral etoposide, one of two new cancer drugs that I'm adding to my regimen starting two weeks from today. 

At least I think I'm adding them ... 

When we pulled up at the pharmacy window, a staff person came over to explain that the pharmacy had not ordered the drug because the Medicare reimbursement was not sufficient to cover the cost. She said the pharmacy was not willing to eat the difference between the price of the drug and what Medicare would pay. 

I was supposed to get 14 pills of 50 mg. etoposide, and the cost was about $600. Medicare would pay less than $500, I was told. 

So I asked if I could pay the difference with my credit card, and was told no. 

The only alternative, according to the pharmacy employee, was for me to pay the entire cost--$600 or so--and then submit the bill to Medicare for reimbursement. Well, I could afford to do that maybe once, but I have no faith in speedy Medicare reimbursements, and I'm going to need another $600 worth of the drug in a month. 

That's quite a Catch-22.

The pharmacist suggested that I try the pharmacy at the Seattle Cancer Care Alliance and see if they would fill the prescription for me. I can't see why they should, since presumably they have the same reimbursement from Medicare, but the pharmacist seemed to think it was worth a shot. 

Or maybe she was just trying to get me away from the window. 

@ Jeanne Sather 2009.  

 

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.