Caving In

This morning I walked a check for $15.00 down to the mailbox. It's the result of a coding error on a bill that I've been trying to get resolved since April. For a regular doctor's appointment in February, at which I paid my normal $15.00 co-pay, I was charged an additional "facilities charge" of $15.00. The $15.00 facilities charge isn't supposed to apply and, in most of these visits, isn't applied.

I've made phone calls to the billing agency. I've made phone calls to my insurance company. I've left messages for the coding clerk. I've called customer service. Everyone agrees that the $15.00 charge was wrongly assigned, but nobody seems to be able to take it off my bill. And now I've gotten a "FINAL NOTICE" threatening action by the state attorney general's office.

So, I'm paying the $15.00, like it or not. Chances are it will be refunded to me as soon as the check clears, because somebody will look at my account and have a eureka moment - "Gosh, she doesn't owe that. Let's send her a refund check."

The worst of it is, it's for a god-damned $15.00 charge. Who knows how much money has been spent by 3 or 4 different agencies trying to sort this out, send out billings, review statements, talk to me, ad infinitum? That's not even counting my time or my blood pressure. I had thought I could get this straightened out easily, which is why I hadn't paid the damned thing.

Things like this make me crazy. No wonder there's "business opportunity" out there for people who do nothing but straighten out medical billing messes!

Got Dilaudid?

A couple of weeks ago I started having nightmares that I was addicted to Dilaudid, so I spent several days trying to resist taking it. I didn't get the shakes, I didn't get nauseous, I didn't get addled or demanding, I just felt like I was wallowing in pain. It wasn't sharp pain, it was constant, never-ending waves of discomfort. I lost sleep and felt miserable.

I talked with friend and sister M about it - she's eminently sensible, reasonable and easy to talk to. She seemed surprised that I was worried: "Your doctor trusts you to be sensible about your use, and of all the people I know you're about the least likely to be a substance abuser." She told me to get out there and educate myself, and for heaven's sake to use the drug when I needed it!

I started looking and came to the following conclusions:
If one takes opiates for pain and takes them as directed, one may develop a physical dependency, but medical experts recognize compliance as a key indicator that one is NOT an addict.
Physical dependency is different from addiction, but today's social climate can easily lead one to equate ANY use with abuse.
Patients are generally willing to label themselves abusers, and will stop taking their medications despite their doctors' assurances that they will come to no harm if following directions. By not taking their medications they suffer needlessly.

There are several excellent sites available on this topic:
American Pain Society's Advocacy statement, "The Use of Opioids for the Treatment of Chronic Pain" addresses the social and legal aspects
US Food and Drug Administration's Consumer magazine, "Managing Chronic Pain" gives a good overview of the overall discussion
WebMD "Pain medication addiction and tolerance" gives general guideines for discussion and action

I talked it over with Dr G in Cleveland and he's not concerned with my continued use of Dilaudid. I'm taking it when I need it and I never exceed the prescribed dosage. I guess I have to trust myself. All things must be taken on balance:

"Every form of addiction is bad, no matter whether the narcotic be alcohol or morphine or idealism." - Carl Jung (1875–1961)

Double Nickel

Today is my 55th birthday! No more prevaricating to get the "55 Plus" menu selections at Bob Evans; $4.00 movie matinees on Fridays; gosh, the benefits just keep piling up. Glad to be here.

Yesterday's visit to Cleveland: net stable, once again. The lesion in my right lung has doubled over the past 4 months and is now at about 1" across (2.53 cm). The largest lesion in my liver has shrunk from about 3" (7.68 cm) to about 2" (5.49 cm). Other lesions in my liver have traded tit-for-tat, growing or shrinking at the same rate amongst themselves, so that the overall measurement has remained stable at around 3-3/4" total (18.3 cm). By volume I guess it's not much to talk about, is it? Funny to think that so much mischief is packed into in such small amounts of misbehaving tissue.

Guaranteed Or Your Money Back?

My friend Richard often sends me articles from the New York Times - I subscribe to the email headline notices and skip through those regularly, he subscribes to the "TimesSelect" option and actually reads the entire paper daily. So he picks up a lot that I miss.

One of his recent mailings was "Pricing Pills by the Results", which outlines industry thoughts on pricing expensive drugs based on efficacy. The lead example is Johnson & Johnson's proposal that the national health service in Britain pay for Velcade, a cancer drug ($48,000 per patient), but only for those whose tumors actually shrink; monies for other patients would be refunded.

It's an interesting concept, but I wonder how the details would be worked out. What constitutes shrinkage, for example (thirty percent, ten percent, seventy percent, or "all or nothing"), and who determines the definition of success (the drug company, the patient/oncologist team, or the purchaser)?

Is shrinkage the only goal? As we move further and further toward redefining cancer as a chronic illness, managing the disease rather than "curing" it, shrinkage seems to be less dominant in the discussion. I haven't seen any shrinkage for over a year now, yet my disease is well managed and my quality of life is good. I'm more comfortable now than I've been since fall of 2003 when my metastases were discovered, and I appreciate the stability. Shrinkage is a wonderful thing when it happens, but it isn't the only measure of patient response. Having nearly died while taking a drug that was shrinking my lesions at a spectacular rate, I'll take maintenance as the best response.

I can see pharmas pushing for relaxed definitions of success, to ensure the greatest possible rate of payment, and purchasers pushing for stringent definitions of success, to limit the number of payouts required. At what point does the struggle to define the bottom line, also define when and how the drug will be administered? What happens if one elects to remain on a drug even though results might not be "guaranteed"?

I hope that patients have a voice in the decision.

The Cost of War

Some months ago, the New York Times published a cost breakdown of the Iraq war, with details on "what this money would buy." I am always skeptical of such "what-if" proposals; one must accept on face that the funds expended for one cause would be appropriated equally enthusiastically for other causes. Given the legislative paralysis exhibited recently in our fair capitol, I doubt that the yammerers would be happy to provide money, say, for education or healthcare or disaster relief or poverty; all laudable social issues, all fraught with emotions and subject to hot button responses on too many levels. Can you imagine the "my Preznit right or wrong" supporters voting to spend money on social issues? Not bloody likely, I'd say.

However unlikely the tit-for-tat spending scenario might be, it is certain that we're facing a real squeeze on budgets coming up. It will take a long time for us to see how definitively this will affect life as we know it. But the hints are there.

For example, the budget for the National Institutes of Health will be affected as will all others. The NIH budget provides for the National Cancer Institute. The NCI budget for 2009 will be frozen at 2004 levels. We can start expecting cutbacks in research and program support. For some people, I don't suppose this is earth-shattering news. But just try to name an acquaintance whose life hasn't been touched by cancer in some way - I haven't been able to think of anyone.

"Heck of a job, Bushie."

In Memoriam

We lost a very dear friend Saturday. The Bear came into our lives through my friend Swanknitter. She and I left the Big House library vendorship on the same day in 1991, I to take my public library job, she to move to Australia. She followed her heart and married this dear, dear man with whom she'd fallen in love via the Internet (probably one of the first Internet romances, and one of the best). We were lucky to meet him and lucky to count him as a friend.

The Bear was diagnosed with Stage 4 liver cancer about 2 weeks ago. He died in hospital Saturday morning. I feel as though my heart is being squeezed by iron bands and I have cried many, many times in the last 2 days.

Swanknitter, if you read this, you know that words aren't enough and I wish I were there to hug you. I have many favorite memories of our visit, filled with discoveries and laughter (not least the Aussie Burger King creation, Whopper with fried egg and beet root). In my heart he's always going to be perched atop the Snowy Mountains, laughing into the wind.