Healthcare costs for cancer, etc --- discussion

[Bill5107]

Lots to consider here to be sure. I agree to the concerns about agism, wanting it both ways and that there is a huge gap between where we are as a society and where we should be.

Here are the concerns I'm left with at the moment:
1.) As a society we are apathetic. We don't want to be inconvenienced with taking actual responsibility for the freedom and benefits we have in the US. Is this unique to the US? I highly doubt it. Whatever concerns I see here, however important they might be, I don't see any long term solution to as we won't focus on any one issue long enough to actually solve it. . . we'll follow the butterflies to the next issue of the day as we, due to human nature, fatigue from whatever the current battle is.

2.)If we are talking $$$, I have for some reason been really pissed lately about how money is used and abused. Money is effectively printed which amounts to an attack on anyone who is on fixed income(think at least inflation, let alone fast rising medical costs), whether the money is from Govt or their own savings. Looking at the costs of various hospital and medical bills just gets my hackles up too as I just don't see how some of these items can possibly actually cost what is billed... oh yeah, and then look at the "negotiated" costs my insurance claims. . . and then look at what the uninsured would pay, which seems much more defensible. But how to effectively complain about this system since it is complicated and must work in some way? Then let's look at why things are "legitimately" expensive. . . sometimes because of insurance(humans do make mistakes). But how much is due to our society's sue-happy nature and people's lack of basic understanding or comfort with issues of health, death and dying? How much of that money is enriching only the lawyers on both sides, not advancing or rewarding anyone for medical practices or advances?

3.) What can _I_ do to set the example here? There's little I'm knowledgeable in this area (remember the apathy above?) so I'm not likey going to be much help in solving the underlying problems. Personally, I know my treatments are expensive. I also know my prognosis without it is very short. With treatment there is good reason to believe I'll get some more years. . . well, more accurately, this expensive treatment is one step to a multi-year survival. What is the metric? What is the equation to take my preferences into account, my available resources, and my medical options to help give me one way to look at whether or not it's perhaps time to consider switching to comfort mode rather than doing that last treatment? Who knows if I'll have to decide on a 10 month, give or take, treatment that only adds months vs. perhaps choice of treatments run out. . . at which point the equation maybe doesn't matter?

Hmmm.... I'm en engineer at heart, so I do wonder what the cold hard math might look like. Not saying it should be this simple, but it seems it would be a valid data point. ( or data points since certainly there are multiple possible equations)

4.) Luckily even though I have been sickly lately, I am very much on the mend. I really do feel content with life again. Back to where I was before my flight back from Colorodo when I was on vacation.

This is something I really do wish for everyone. Ill or not, I think we all owe it to ourselves and loved ones to _be_ happy, to _be_ content, so _share_ ourselves. Maybe our contentment with life will rub off after all. I know in my case, this is what my family wants for me and it's what I want for them, so that's what I'm trying to find ways to focus on. I can't fix the world's ills, but I can personally be OK with the world despite it's deficiencies.

What's that got to do with this thread? Nothing or everything I say.

[lohidoc]

Well, this is turning into a very interesting thread! This forum is a good place to muse and rant once in a while, and why not. As far as health care costs are concerned it is surely unfair to blame cancer patients, or other seriously ill patients for the cost of (their) health care. And any woman with herpetic vaginitis has my sympathy. Ouch! A large chunk of our health care dollars are spent in the last months of life. No surprise, that's when people are the sickest. But I am a firm believer in individual autonomy and the right to make our choices at this time. Consider my own case: A 30 odd year career, worked hard, never asked for a damn thing, done some good at times and paid $1.8 million in taxes. I think I am entitled to some pay back when I am faced with an existential threat. But like Gaelen I will know when to call it quits.
If, or more likely, when my cancer recurs I will probably agree to further treatment, folfiri and avastin most likely, even though I know the chances of cure are small. But I will do it, not for my own sake but for the sake of my two teenage children, who, somewhat to my surprise still love me.

But there are societal questions as well. We, the baby boomers and those who have come after are the most fortunate generation in mankind's history. We have not known war, or hunger, or oppression and genocide. For most of us, nothing but peace, security, freedom and material well being. And it was never enough. I think of the generations of my parents and grand parents. I think of my father, joining the resistance as a young man, ending up in a concentration camp, and surviving to go off to another miserable war. And then building up his life after all that, raising a family, and never complaining about any of it. I think of the 35 million civilians who died in Europe between 1930-45 as a result of deliberate state murder. I think of the many millions of people who even today live in conditions of famine, and war, and oppression and murder. I think of the 200,000 who died in the tsunami. Truth is we are spoilt, soft and filled with narcissistic arrogance. And yet, cancer or not, we are the lucky ones. When we are 20 we don't think about death. When we are 40 or 50, we have seen our parents die. But we think we we are entitled to at least reach our early 80's, our life expectancy in this world. And when we are 65 or 70 we believe we will live to 85 or 90, in good health of course and material comfort. 70 is the new 50 right? And we believe this is the natural condition of mankind. Truth is, few of us will ever reconcile ourselves to our own demise, at any time. And yet death is certain. And to have our pretty plans derailed by cancer, well, something, no, everything must be done…..

For myself I know how far I will go with this. And I will not rely on the ministrations of others. I will try to leave my children in some degree of comfort and peace, and I hope they will think well of me in the years to come, in spite of all my failings. And meanwhile, I plan to enjoy the time that is left and consider myself very fortunate indeed to have lived this life. And as far as the politicians, the bureaucrats, the insurance executives and all those others who think they have the right to tell me how to live and how to die….. to hell with them (said with a smile).

[justin case]

Pretty much every aspect of the high cost of health care, has been touched upon in this thread. I just don't want to leave out that doctor, who knows you have insurance. I have had one that has gone out of his way, to order any test, or develope any treatment plan, with which he could make a buck. Being in Houston, where there is no shortage of oncologists, I think the competition to fill infusion rooms leads to offering more, and suggesting anything the patient could want, and probably more than some need. We talk about lawsuits and scammers, but I also think unscrupulous doctors, play a role in the overall well being of the public they serve. I don't know how much treatment I will go through in my life. I may be done with cancer this year. I do know, I have already exceeded, $200,000.00 in treatment in 9 months, and I'm not done yet. I dismissed my old onc, and have a new one that will treat me with what is neccesary, and not with treatments that will keep her practice afloat. Sorry guys, I've been wanting to get this off my chest for a while. I just hope it fits into the line of thought that this thread intended.
Regards,
Michael

[Laurettas]

Michael, I agree. I have seen some of those doctors in action. My MIL had two joint replacements done that she didn't need, her heart went into a-fib after the second, causing lots more medication and tests and dr. appts; one joint failed and had to be replaced. She has aged at least 10-15 years as a result of all of this. I am still angry about all of it.

Another aspect of this that is difficult for me is the unknowing. If one had some assurance that x treatment would yield y life expectancy, then one could make somewhat of an informed decision. But one just can't tell. When my husband was first diagnosed, I did a lot of reading and it did not sound good between the type of cancer that he had and the locations of the mets. Everything led one to believe that chemo would not be very helpful for him. He decided to go ahead with the treatments and at this point his cancer is shrunk back to almost normal lymph node size with very little metabolic activity at one year from diagnosis. The doctors don't know the individual reactions to any particular treatment, no one does. So it is all a big guessing game costing hundreds of thousands of dollars.

[rp1954]

Excellent discussion and analysis by Gaelen on the aspects of cognitive dissonance between third party payments, expectations, hope, "freedom" (and "free").

An extra avenue of advance is that dramatic cost reductions in treatment become possible for the worst common varieties of CRC, if treated reasonably soon at diagnosis, before dessiminated mets are well established.

What if advances in oral treatments for immunology, chemo and molecular target treatments cut costs and side effects so radically that treatment was home based and oral? That an average 2 year prognosis could be shifted to 5-10 years for under $10,000 per year or into potentially curative surgery?

I know many people will say this is an impractical or delusional dream. Yet, if correct and statistically valid, some of the posts, papers and board discussions indicate such technologies may already largely exist, if combined and used early on for the majority of the metastatic prone population with the most common dread CRC biomarkers.

[Laurettas]

Do you have links to some of this information?

[Guinevere]

...About Guinevere's mention of $138/day: I believe this is the current daily reimbursement per patient from the government to qualifying hospices-- NOT the amount the patient pays. It may sound like a lot, but when the actual expenditures per patient are all averaged together, our hospice spends significantly more than that per patient (because we do not believe that cost should ever be the deciding factor in what drugs to administer, unlike many for-profit hospices). Which is why fund-raising is mandatory to keep non-profit hospices afloat. When a patient signs up for hospice care, all drugs related to their diagnosis are covered by hospice, along with all durable medical equipment like hospital beds, commodes, oxygen, etc. The patient pays nothing. Just wanted to make that very clear...

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May all benefit,
Rachel

Thanks, Rachel. I should have made that clear in my post. I'm blaming it on chemo brain!