Who Decides The Price Of Human Life?

Personalized medicine promises to deliver more tailored health care. But what if a person's genes reveal he won't get much benefit from the only available treatment? Ethicist Leonard Fleck discusses the tough decisions Americans face in deciding whether to pay for others' expensive treatments.

Copyright © 2010 NPR. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

PAUL RAEBURN, host:

From NPR, this is SCIENCE FRIDAY. I'm Paul Raeburn.

Researchers finished sequencing the human genome in 2003. And even before that, they were linking particular genes to different diseases, finding all kinds of mutations that could lead to breast cancer and other ailments. All of which led people to think: If doctors knew more about patients' genes, they might be able to tell which illnesses each patient would get and how well his or her body would respond to certain treatments.

They could tailor treatments to each individual to get the best treatment with the fewest side effects and not give expensive medicine to people who didn't need it. If that isn't the Holy Grail of medicine, it's close. It's certainly on the track.

This personalized medicine therefore sounds like a very good thing - maybe even a cost-saving thing. We already spend 17 percent of our gross domestic product on health care, the kind of figure that's been bandied around from months and months with all the health care talk in Washington.

President Obama and many of the doctors we've interviewed on SCIENCE FRIDAY in recent months and years have talked about the problem of rising health care costs. Maybe more personalized treatments could eliminate some of the unnecessary spending. Ah, but it's never that simple.

There's a problem, as my next guest writes in the current issue of The Hastings Report. What if your DNA says you will not get as much benefit from a $100,000 cancer drug as your neighbor, that your neighbor would live two years with the drug but you'd live only two months? Does that mean your neighbor gets the drug and you don't?

Joining me know to explore these kinds of tricky ethical issues is Leonard Fleck, professor of philosophy and medical ethics at Michigan State University in East Lansing. He joins us from a studio on campus. Welcome to SCIENCE FRIDAY, Dr. Fleck.

Dr. LEONARD FLECK (Michigan State University): Thank you, Paul.

RAEBURN: Now, these issues have come up before in other kinds of contexts, but what you're telling us now is that personalized medicine is going to make this even worse.

Dr. FLECK: Yeah, that is exactly what I'm saying. Personalized medicine is going to make it more difficult because the very fact that these drugs, these expensive cancer drugs, represent the difference between something of an increased life expectancy and a much shorter life expectancy, that something -and they represent a kind of last-chance therapy for many patients - it seems that everyone will want them.

But the problem, as you mentioned in your introductory remarks, is that these drugs - in some cases for individuals with a particular genotype - may yield only two extra months of life expectancy for that $100,000 and other individuals may gain two or three years for that $100,000. And we have to ask ourselves, in a society with limited resources and virtually unlimited health care needs, do we have equal moral obligations to provide the drug to both those sorts of individuals?

RAEBURN: Well, just to muddy the waters even further, we were - as you might imagine, this was subject of a lot of discussion around the office this week, this morning as well. Two months is not always two months. For example, if somebody gets two months and that enables them to see the birth of a grandchild or a child get married, that might be a different two months from somebody who doesn't have any of those big life events coming up. Do you think that's the case?

Dr. FLECK: I'm sure that would be the case in individual circumstances. But the problem is that most of the time the costs of these drugs are being paid out of what I'll call social resources, either public monies, Medicare/Medicaid, or from an insurance company, Blue Cross, Blue Shield or whatever. And the question is whether or not individuals, for those very personal reasons, would have the right to make a claim say, on $100,000 worth of medical care for those two extra months of life - for that, for those very personal kinds of reasons.

We, of course, are not saying that as a society we should absolutely deny those individuals access to those drugs. They always have the option of purchasing those drugs for themselves with their own money if those personal events are that important to them. But it's not obvious that given other health care needs that makes stronger just claims on us that we have a moral obligation to be responsive to those kinds of personal life circumstances.

RAEBURN: Well, I think the - I see your point. It's hard to tell somebody who has a lot of money that you can't buy the drug for yourself. On the other hand, that raises questions too. You know, the drug is available to, for example, Mayor Bloomberg in New York but not available to me, I would say, at $100,000 a shot, if my insurance didn't cover it. So doesn't that raise yet another kind of fairness issue?

Dr. FLECK: Well, it all depends on how we, collectively, initially made the decision to draw lines as to what we're willing collectively to pay for and what we find not to be a very good buy or a buy that is morally required of us as a society. One of the reasons why we would want to make decisions in this regard is that there are other kinds of healthcare needs where we can do a lot more good for a lot less money for many more people. And given that we have limited resources, it seems that that's the direction in which we ought to be allocating those resources and that individuals in what I would call a rational society would make precisely those kinds of choices.

The fact that somebody like Mayor Bloomberg could afford to pay for these drugs out of his own resources does not harm anyone else's rights, does not make the world less just. And so in that respect, as long as we're not subsidizing his purchase of those drugs with, say, tax subsidies of some kind or another, there really isn't any injustice there. That's just the way the world works in our society.

RAEBURN: Right. Now, the when we do this kind of arithmetic and mathematics, do we want to factor in one sees all sorts of numbers about the cost or the value of a human life. Is there any sort of generally accepted figure for that, and do we need that in order to make these decisions?

Dr. FLECK: We need some kind of reference point. And at least healthcare researchers nowadays, they look to the amount of money we spend to save the life of somebody who has who's in kidney failure, and the reason why they choose that particular number is because way back in 1972, when renal dialysis first came online, we had literally thousands of individuals each year who were dying of kidney failure whose life could be saved if they could afford access to dialysis, and most people could not afford access to dialysis because at the time, if you translate those dollars into 2010 dollars, it would have it was costing about $90,000 a year.

And so we passed this program, the End-Stage Renal Disease Amendment to the Medicare program that said we'll pay for dialysis and everything else related to your failed kidneys. We'll do that as a society because we don't want people to die if we have the medical capacity to save them for an indefinite period of time - 10 years, 15 years, 20 years is what is available to these individuals if their kidneys fail early on early enough in life.

And so today the price of saving a year of life per person like that is about $67,000. And so that gives us a kind of reference point. We believe thats a good buy. And so relative to that standard we can say that other healthcare interventions for heart disease, cancer, COPD or whatever that come in at that figure below should be judged to be reasonable buy by our society.

RAEBURN: Now, did was that decision made in the '70s because people hadn't realized what they were getting into? You know, to do an open-ended thing like that would never happen now, I wouldn't think.

Dr. FLECK: That's absolutely correct. No one everyone believed that the renal dialysis technology was a unique kind of technology, and it was because of that uniqueness that we believed it was affordable. They also believed that at 20 years out, the cost of that investment would be about a half billion dollars per year, but the actual cost this year of sustaining the lives of about 450,000 dialysis patients is about 28 or 29 billion dollars. So they clearly underestimated that.

(Soundbite of laughter)

RAEBURN: By a bit.

Dr. FLECK: Yeah, by a bit. Yes.

RAEBURN: Now, in your in the kind of framework that youre developing and exploring here, do you have an opinion on that? Was that a good idea? Was it a - should we stop it? What do we do with that? I mean, I understand politically its tough to stop it, but theoretically, what would be the right thing to do in your view?

Dr. FLECK: In I mean in my view, given the basic wealth of our society, we certainly should continue to provide to continue to save and sustain the lives of individuals on dialysis, though, I have to add, that part of the problem there is that we have gradually expanded the range of individuals who are seen as worthy candidates for dialysis - that is, medically worthy candidates.

And so initially part of the reason why the program was so favorably viewed by Congress was that it was individuals in the middle of life, in their 40s and 50s, who were in kidney failure. And so theres a lot of life left for them to be saved. But nowadays the fastest growing segment of the dialysis population are patients in their upper 70s and 80s. And its not as obvious there that were getting as much good or as much quality of life for those individuals as was true when the program was first funded.

RAEBURN: Now go ahead.

Dr. FLECK: No, you go ahead.

RAEBURN: Well, the I understand that your field is ethics, youre in the ethics biz, as we say...

Dr. FLECK: Mm-hmm.

RAEBURN: ...and not a businessman or an economist. But with these new you talk about some of the cancer drugs. I wanna talk about that a bit. Theyre so incredibly expensive, a hundred thousand dollars a year, maybe more. Are all the new drugs going to cost that much, or is somebody going to find a cheap one thats going to help us out somewhere?

Dr. FLECK: It certainly seems that in terms of whats in the pipeline, most of these cancer drugs are coming in somewhere between the 50,000 and 130,000 dollar mark. Now, theres nothing that says the drugs have to be that expensive. Drug companies build into that price the cost of their research, the advertising, the marketing and everything else thats associated with that. And beyond that, they simply they pick a number that reflects what they believe the market will bear. We have a kind of prevailing social ideology, I guess, that human life is priceless, and drug companies in effect are willing to take advantage of that belief and in effect charge whatever they think Medicare would be willing to pay, or other insurance companies.

And Medicare, it seems, is technically barred, when its considering approval of these drugs through the FDA, from taking into account the cost of these drugs in determining whether or not it ought to be Medicare funded.

RAEBURN: Now, as the health reform - yesterday was - I guess it was yesterday was a big day for some of the health reform, and some of the things kicked in from the recent bill. As that continues to be fully implemented, are there provisions in there that will address any of these questions?

Dr. FLECK: The provisions that will in part address these questions are provisions for comparative effectiveness analysis among, for example, the various cancer drugs that are out there that might address colorectal cancer or breast cancer and so on. Again, there is great reluctance to actually look at the cost effectiveness of these drugs, though there are researchers obviously outside of government who are looking at these kinds of things.

So if we go back, for example, to the drug bevacizumab in connection with advanced breast cancer...

RAEBURN: Yeah, give us the - what's the - the brand name, I think, is easier to remember.

Dr. FLECK: Oh, the brand name is Avastin. And that, of course, is the name that you see in the newspapers...

RAEBURN: Right. Right.

Dr. FLECK: ...and that has been the focus of some recent government attention.

RAEBURN: Yeah, and I was going to ask you about that, because that was one of those interesting things that didn't seem to work but then did in a funny kind of way.

Let me pause for just a moment, though, before you answer, to say that I'm Paul Raeburn and this is SCIENCE FRIDAY from NPR.

So in the initial study that was done - is it Avastin, is that how it's pronounced?

Dr. FLECK: Avastin, yeah.

RAEBURN: Okay. It didn't look very good, but then a further study made the picture more complicated.

Dr. FLECK: I mean the further study said, well, patients are getting at least six weeks to two months of life on average. But then the research that was done by this one medical group at Indiana University showed that around that average there were huge differences, and those differences were linked to different genotypes.

So one genotype, the genotype that got the greatest benefit from this drug, got more than - on average more than two extra years of life over individuals who were on what you would call the standard chemotherapeutic regiment...

RAEBURN: So by genotype we mean people with a certain collection of genes or certain critical genes that makes them responsive to the drug.

Dr. FLECK: That makes them especially responsive to that drug, that's correct. And - but that represented only seven percent of women with advanced breast cancer. And in the next group down, who represented 11 percent of that total population, they received the benefit of five extra months of life.

Now, the difference between those two is that if you're paying $100,000 and you're getting two or more years of life, then the cost-effectiveness number is $50,000 per life saved. But for the group that got only five months of life, the cost-effectiveness number $240,000 per year of life saved. And that's the kind of issue that we have to address, not just as an economic issue but as a moral issue, as a question of what justice requires of us when we have only limited resources in our society that has money to meet virtually unlimited health care needs.

RAEBURN: Now, I have to say, when I read your article in The Hastings Report, here's the part that brought me up short. I think, you know, the things we're talking about are very interesting, and you've clearly thought a lot about these things, very illuminating. Until we get to the point where you say something like - I don't have it right in front me - what we need to resolve this is a clear, you know, honest, democratic decision-making process, to which - at which point I would sort of like throw my pen against the wall...

(Soundbite of laughter)

RAEBURN: ...in despair of such a thing ever happening. I mean, I understand why that's a good way to go, but will it happen?

Dr. FLECK: It can happen. I mean, I'm not a predictor of the future. I've generally done...

RAEBURN: That's what we always try to get you to do. You know that.

Dr. FLECK: Yes, I know. But the one advantage I have is that I'm not a politician, and when I go out and talk to public groups and professional groups and do these workshops with them on these kinds of issues, we do not have - we have never had, in all of the hundreds of workshops that I've done, the kind of awful language that has characterized this debate around health reform and the challenges of what's called health care rationing or priority setting.

People can be and will be respectful to one another if you sort of set the stage appropriately, if you make - if you help make clear to them the fact that the problem we're talking about is not a Republican or Democratic problem, it's not a liberal or a conservative problem, it's a problem we all have to struggle with and that affects us all.

And furthermore, it's a problem that we can't really resolve just as individuals. We have to have health insurance, and that's a social-type institutional mechanism. And so we have to come to some kind of rational and fair agreement.

RAEBURN: Maybe you should be a politician. We're just about out of time, but maybe that's the way to go. Give it some thought.

(Soundbite of laughter)

Dr. FLECK: Okay.

RAEBURN: I'd like to thank my guest, Leonard Fleck, professor of philosophy and medical ethics at Michigan State University in East Lansing and possible future politician. We'll see. Thanks for being with me today.

Dr. FLECK: You're very welcome.

Copyright © 2010 NPR. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to NPR. This transcript is provided for personal, noncommercial use only, pursuant to our Terms of Use. Any other use requires NPR's prior permission. Visit our permissions page for further information.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR's programming is the audio.

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and terms of use, and will be moderated prior to posting. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.