Well, They Did Ask Me

"So, what do you think about this deputy sheriff thing?"

Over the past couple of weeks any number of my friends, acquaintances and former co-workers have asked me this question. News broke of a former county deputy sheriff, a suicide last month, who had in fact scammed friends, relatives and co-workers with a cancer hoax. The local police organizations had raised $20,000 for his "medical bills"; co-workers had driven him to appointments and picked him up after his "treatments"; they had donated sick leave when his own ran out in the course of his multi-year battle with 3 supposed bouts with lung, brain and testicular cancer.

Outward appearances were faked with weight loss, careful depiliation and selective use of tanning beds to simulate radiation burns. Autopsy results? No active cancer, no evidence of cancer, no evidence of surgeries, no nothing. Family devastated. Friends and co-workers embarrassed and angry. Local residents indignant. Those who don't like him are pointing the finger at the sheriff for lax supervision.

So, here are my thoughts: I do find it hard to believe that the family could have been unaware of this, as claimed, but I wasn't there and I don't have any idea how open the husband and wife were about health. Some people don't WANT to share all the gory details with their nearest and dearest, and some nearest and dearest don't WANT to know. You can't force involvement with someone who doesn't want to share, on either side.

I think co-workers can easily be left in the dark. Health is so very private; most patients provide the minimum of detail. If one looks the part, as this fellow did, people will accept what they're told, commiserate, and be thankful that they're not in the same boat. It would be easy to fool people and, unfortunately, it happens all too often.

I think people generally misunderstand HIPAA. Yes, one's employer can ask for information from one for administrative purposes. But the employer cannot directly query the provider unless one gives written permission. If the employee provides forged documentation, as in this case, and does NOT give written permission for the employer to consult the records directly, as in this case, the employer has no way of verifying what has been said. It didn't matter that the sheriff had his doubts; he was in no legal position to demand the information, and that in no way reflects upon his supervision.

Finally, I think that this is a perfect example of why health care needs to be reformed. We are easily taken in by hoaxes and scammers because it's easy to believe that an individual can be faced with insurmountable medical bills under the present system. As I told one indignant friend, "Saint H and I are one life-flight and a few unexpected expenses away from bankruptcy ourselves, and I have good insurance and some money in the bank."

Those who complain about the people "who get everything paid for": All I can say in response is, Few people want to be uninsured, and nobody asks to be sick. Doctors are obligated to provide treatment by the terms of their training and licenses. What would you do, ask the under- and uninsured to just go die quietly because they somehow don't deserve proper care?

If I make a few friends, acquaintances and former co-workers angry because I tell them what I really think ... well, they did ask me. Sorry if my opinion doesn't match theirs, but those who know me well shouldn't be surprised by this.

Usual and Customary

Today's New York Times featured an article I've been waiting to see for a long time. Andrew Cuomo, Attorney General of the State of New York, has ordered UnitedHealth Systems to review its database of "usual and customary fees" covered for non-network charges on health insurance costs. The normal procedure, as we all know, is that in-network physicians and institutions have agreed to accept a certain fee for procedures, tests, and office visits; patients are encouraged to go to in-network resources so that the agreed-upon fees will apply, thus saving the insurance company a great deal of money. If a patient chooses a non-network provider, then the patient is responsible for the difference between what the provider charges and the "usual and customary fee". Cuomo alleges that the UnitedHealth database is consistently low-balling the costs, so that the penalty for using a non-network provider is a great financial burden to the patient. The UnitedHealth database is used by nearly all insurance companies as the basis for these costs. It's an interesting concept and I certainly understand the motivation behind it; the "in-network" relationship works well both for the insurance company and the health service provider.

But what happens when the patient has no choice in the matter? All of the local anaesthesiologists are non-network providers, for example. I paid $800 for the anaesthesiologist attending my nephrectomy - what choice would I have had, between undergoing emergency surgery at another hospital, or not having anaesthesia for the operation? Likewise, my lifeflighted trip from the local hospital to OSU was hardly something I had a choice in; I made it to ICU with literally minutes to spare before dying. Was I to have waited for some other helicopter with medical staff to show up? And who determines a "reasonable" cost for emergency transport under those circumstances - what comparable costs can you call for? That $5300 bill was worth it too, so far as I'm concerned, but it's hard for most people to come up with such a sum on short notice. I still keep a reserve in savings for that reason. Anyway, I'll be interested to see what happens with Cuomo's orders.

For the sixth straight week, Saint H will be spending at least one night in Columbus due to weather. Right now it's snowing (4" on the ground); we're supposed to get another 4" tomorrow followed by blizzard conditions. I may not see him until Friday at this rate. Oh well, I have lots of movies to watch ...

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."