Sunday, May 02, 2010

How much am I worth?

Oh wow…  Thanks to my Kidney-Onc friends for alerting me to this story and providing this link.  Last week CNN aired a story called  'the high cost of dying' featuring the story of a man who had kidney cancer.  The story made some good points, but made more points that gave me a headache.  Watch it and see if you agree with my thoughts.

Before you even watch the story, read the summary below the video clip.  The woman did NOT spend $618,000 on her husband's cancer treatment.  That is the total of what was CHARGED to their insurance.  And that doesn't mean that was even what the insurance paid... if you have ever studied an explanation of benefits form from insurance, you can see that there is the 'retail' charge for a service, then the rate that is negotiated by your insurance company.  Many times it is much lower.  That is the amount your co-insurance is based on.  Of course, if you have no insurance at all, you are being charged 'retail'; you'll either never pay it off, will go bankrupt trying, or you won't go for treatment at all because you can't afford it.

Drug costs:  drugs are Very Expensive... we are all aware of that already.  Especially new drugs.  All kidney cancer drugs are new drugs, except for IL-2.  And again, the prices quoted in the story are noted as what was 'charged', not as what anyone paid for them.  It's mind boggling what drugs can cost, but slanted reporting to inflate the costs by the use of the charged amounts in the story.

The wife states at one point that the money spent on her husband's last hospitalization was to 'confirm that he was dying'.  What is she trying to say?  Were they forced to put him in the hospital?  Was he not there to hopefully feel better, even if only for a while?  It sounds as though that hospitalization came in his final stage; if they really thought it wasn't going to benefit him, perhaps they could have opted for in-home hospice treatment or no treatment at all.  Or is she upset because they expected the hospital treatment to extend his life?  If it had, would she now be talking about how expensive it was?  With terminal illnesses, hindsight is 20/20.  At the time a family is facing and making treatment decisions, they don’t have the luxury of foresight to say, well, this isn’t going to help the patient, so it’s not worth the expense, much less any pain or discomfort the patient may have to endure.  The family makes the decisions they think best at that time.

The reporter asks if the husband would have wanted to be 'saved at any cost'.  What kind of question is that?  If a person thinks that a treatment has the possibility to either cure them, or to extend their life with some quality of life intact, how often is that person going to say "oh never mind, this treatment is too expensive.  I'll just lay down here and die.  It's been nice knowing you all."  I am very aware that in the future Jim and I may have to face some high costs, depending how things go with my disease.  So far we have been very lucky and I feel very grateful for having excellent insurance; I get very nervous about the thought of being without that insurance.  But it would take a lot for me to give up on my life just because of the cost of treatment.  I realize that because I have insurance, and good insurance at that, that thought is a luxury some other people don't have.  And that makes me really sad.  

Then, after the wife says that her husband would have been appalled at the total cost of his treatments, she notes that their total out-of-pocket was about $10,000 and that she'd do it again in a heartbeat.  So now they've acknowledged that the patient's family didn't spend over $600K.  And, after making all the earlier shocked comments about costs, she basically says that she wouldn’t have done anything differently.

The last comments of the reporter, as well as the title of the report, bothered me a lot.  "Did all those expensive treatments actually help her husband live longer? Not even his doctors can say for sure."  No, they can't say *for sure* but they thought that they might, right?  Otherwise they wouldn't have offered them as options.  Despite what some cynics believe, I don't think that most doctors are in the business of giving people lots of useless treatments, just to run up a high bill.  Is there inflation of services in the medical business at times?  Absolutely.  But the tone of this final comment, along with the title "the high cost of dying", makes me think that the complaints about the costs are because the patient did after all die in the end.  Had he lived and gone on to do great things, or even live a productive life, would this story have aired?  

So there is the point, after all... should we as a society spend so much money on medical treatments for people who are just going to die anyhow?

Well, there's the thing... who knows if the patient is going to die anyhow?  Take a look at this patient.  He was free of visible cancer for two years after his nephrectomy.  Then he had IL-2 treatments, and went 3 more years before needing more treatment.  So there are three years he could spend with his family and friends that he might not have otherwise had.  He was gracious enough to participate in a clinical trial, which he likely hoped would benefit him.  Without these treatments, when would he have died?  Nobody can say, just as nobody can say that the treatments were useless because he died anyhow.  I know a number of people (some reading this right now!) who have battled stage IV kidney cancer for years, if not decades.  They have been through a myriad of treatments and drugs, some of which worked well, and others which failed miserably, along with various results in between.  Not only are these people still alive, they are LIVING lives of quality.  They are also sharing their information with others who are newer to the journey, to give us perspective and hope.  They are my inspiration as I plan to be another person who holds on for more and better treatments, in the hope of a cure one day, and if not a cure, then the ability to keep my disease at bay so that I can continue to live my life.

The cost of health care in the US is an enormous and enormously fraught topic right now.  I totally agree that costs need to be contained somehow.  But I also fear that people like me will not get the option to fight to live our lives if decisions are not made carefully.  When I read or hear the thoughts of someone who has insurance and has never had to deal with a serious illness, I understand a little bit why they feel like they don't want to have to pay for everyone else.  It's easier to feel like others have bad luck and will just have to 'suck it up' when you've never had to face it yourself.  It's true that a lot of our circumstances are out of our control.   But having the choice to have medical treatment shouldn't be. 

If you want to see another story with a slanted comment, watch this clip from CBS news.   The story itself is intriguing; it discusses the use of a vaccine to treat prostate cancer.  The statistics they report on survival of people on the study don't sound great, but they are likely to be better in real use when they are not just being used on people in clinical trials, who tend to be those for whom nothing else has worked.  In the kidney cancer world, the first statistics on the newer drugs didn't impress me.  I remember the first time I attended a kidney cancer patient meeting, at which Dr. Rini happened to be speaking - this was before I was his patient.  The progression-free and survival times for the patients in the studies didn't sound very long.  It wasn't until later, when I met people who have had true success, that I understood that the patients in the trials were much worse off than people taking the drugs once they were approved. Listen to the comments by Katie Couric at the end of the piece.  Thank goodness the reporter explains what I have above.  I wouldn't disagree out-of-hand that tens of thousands of dollars is a lot of money to spend for a small increase in a lifespan.  But again, they are looking at this with the benefit of hindsight... and since these are experimental trials, nobody knew what might happen.  But do most people watching and reading these news stories understand that?  Probably not.


Joannah said...

Very well said, Liz.

Julia said...

The thing about cancer treatment is that noone knows who will survive. So is it worth treating a young mother who might live to see her kids grow up? You bet it is. Until we develop the medical 'crystal ball', then we need to treat patients aggressively, if that's their wish.
FWIW, when Ry was diagnosed with leukemia, we were told that he had less than a 15% chance of surviving five years. He was 15 months old at the time, and we were obviously absolutely devastated. He got some very, very aggressive chemo, (expensive), was hospitalized several times (way more expensive), and had some pretty pricey supportive care. The upshot is that he is alive and thriving at almost seven years old. He has kicked the crud out of his prognosis, and although he has a couple of years to go before he can be really considered "cured", we're hopeful.
You can't put a price on someone's life--and you cannot predict anyone's outcome with absolute certainty. It makes me shudder to think that he could have been denied care because of his statistical chances of survival.

Of course you're worth it....and I hope that you get decades of good time. Of course, I'll cross my fingers that there will be a cure in the meantime. As an oncologist I work with once said, "Some people will survive even the most devastating of cancers". You're just going to have to count on being in that group. :)