(00:00:00) Usually one says it's a pleasure to be giving a talk. And in this case, I have to restrain my enthusiasm. I realized once I had agreed that they're really being asked to do a task. I consider highly unpleasant and difficult. And the reason for it is fairly simple. The question before us is how we ought as a society to decide whether how and to what extent to provide resources for bone marrow transplantation. What's unpleasant about that question. I think the answer is really simple at a time of enormous budget constraints. We're asked we're being asked to bed providing funds for something that we know to be extremely costly. We know we as well that we're (00:00:51) going to spend the funds on something that does not by any means guarantee a hundred percent success (00:00:56) rate. In fact in many cases as we saw figures earlier not A (00:01:00) high success rate (00:01:02) we know as well that there are very few good solid long-term technology assessment or outcome studies for this particular technology. We know of course that for (00:01:14) individual patients. There can be enormously painful burden some side effects. (00:01:20) And of course, we know that given the constant changes in this technology. We really don't have good cost-benefit studies either. (00:01:30) So here we (00:01:31) are under great pressure by virtue of the desire to move forward with (00:01:36) this technology and particularly by virtue of the fact that without the technology people will die that is to say we are forced to deal with the work but I think is the worst kind of dilemma and (00:01:47) contemporary health care and expensive and increasingly expensive technology which promises some but not (00:01:56) perfect benefits and (00:01:59) over against which is the fact that if people don't get it they will die. This is a (00:02:05) particular challenge to people of my persuasion on these General issues for a (00:02:10) couple of reasons. I become known a bit. I suppose that's why I was invited here because I've talked about the need for (00:02:15) rationing and limiting Healthcare resources (00:02:18) and in a way to invite me to (00:02:20) take up a real case. Like this (00:02:21) is to rub my nose in the problem and I suppose (00:02:27) we all understand one clear dimension of it namely it's one thing to talk in the (00:02:32) abstract about setting limits about holding back about not about trying to be sensible as to what we spend our money on in healthcare (00:02:40) and it's quite another thing to deal with living (00:02:43) people who will be harmed if not killed by our failure to provide resources this (00:02:50) movement from the general level where we (00:02:52) might agree. Yes. We have to set some (00:02:53) boundaries to the Practical limit where we have to (00:02:55) say no to individual people is very painful. I've reminded of this by mr. Sutton's (00:03:01) remarks earlier. He mentioned the (00:03:03) In Pittsburgh a couple of years ago Doctor Who Doctor starzl transplanted liver transplant. I was at that time speaking in Pittsburgh and an enterprising reporter asked me what I thought of that case. I thought I did I said I did not think it a good Trend to move to organ transplants and people in their 70s the reporter being a good enterprising reporter decided to call up the woman and put the question to her. What did she think of My Views? Well, it turned out she had very little use for my views. She said I'm glad to be alive and what would he have done in my case? And of course, I think all of us say, we may recognize the economic problems, but when it comes down to our wife our child our parent then it's a different (00:03:53) matter. So here is it (00:03:54) right a challenge to those of us who are trying to think about limits. How do you deal with these (00:03:59) human beings? I've also had The Misfortune of debating Thomas starzl. About limiting organ (00:04:06) transplants and that the problem with dr. Starzl. You can talk about these large issues and what he does is throw up on the screen pictures up Sally Age 3 who and and Jimmy and well, of (00:04:18) course, it doesn't take very long you feel absolute rat (00:04:21) and how can you be talking about these nasty things? And here I am the problem, of course though is that if we allow ourselves to totally to be caught up by the individual cases to look at that side of (00:04:33) things. I believe it's going to be utterly impossible for us in the future to devise any kind of rational (00:04:39) effective approach to these problems. (00:04:42) That is to say we are going to have to find some (00:04:44) effective way to move back and forth between our general needs to have a sensible Health Care system. (00:04:50) And the (00:04:52) fact that (00:04:53) that is going to require of us that we do in fact say no and that we will (00:04:57) say no to some individual. So here we have a very fundamental dilemma and even trying to cope with the Problem at its most basic level now. There are a number of ways to avoid getting in this dilemma (00:05:13) and let me mention some familiar ones (00:05:16) because we'll see lots of them in the days ahead with their we can (00:05:20) either stall on dealing with the problems or we can try to get rid of them altogether. Of course, the standard way of stalling (00:05:28) on many of these issues is one used by the insurers namely to declare certain procedures experimental and refuse to cover them. This is a standard way of with all new technologies of the (00:05:42) insurers dragging their feet for as long as possible and finally saying, (00:05:45) okay. Okay. We it's now a standard and we'll (00:05:47) accept it. So that's that (00:05:49) and that that of course is going will happen here as there are New Uses found for bone marrow transplantation one way to get rid of the problem altogether a common one here a little less of these days, but (00:06:04) Still here namely that that given the absolute value (00:06:08) of human life. We shouldn't have this discussion at all. We should (00:06:11) simply pay whatever it takes to save (00:06:13) life end of discussion. The problem with that position, of course is that it overlooks the fact (00:06:21) that by taking that was some patients you (00:06:24) may well be deny having denying needed care to other patients (00:06:28) that seems to me in the name of a very high (00:06:31) morality to be overlooking the realities which mean that what you give (00:06:37) some in Unlimited (00:06:38) Supply may result May mean that you have to limit what others get (00:06:42) a third wonderful thing we like to do in this country is we say, yes, it's terribly expensive let the government pay for it. That's the government. Of course. He's not you and me. It's that (00:06:54) abstract group somewhere in Washington. They have money as let them pay for it (00:07:01) the problem. Of course, this is just pushes the problem (00:07:03) somewhere. Also as taxpayers, we naturally say the government should pay for it, but we don't want to have our taxes increased (00:07:09) but there's another even more basic problem. What (00:07:13) should the government think about the matter and that is to say what should our elected representatives think about the about the question. How should they go about deciding whether to provide the support or or not? (00:07:25) And of course (00:07:27) finally one device that might be mentioned occasionally as (00:07:32) mentioned is that we should simply refuse coverage altogether until we have in hand absolutely perfect outcome assessment studies and cost-benefit analyses and that until we have those proving that this is absolutely efficacious Beyond any doubt and cost beneficial to a superb degree. (00:07:51) It shouldn't come in (00:07:52) the problem. Of course at that approach is we (00:07:54) will never find get results of that (00:07:57) kind particularly since Technologies keep evolving particularly (00:08:00) since most (00:08:01) certainly technology. Assessment studies are (00:08:04) a lot are likely to show mixed results. Not either things being perfectly terrible or perfectly great, but usually (00:08:11) somewhere in between at least for some (00:08:13) classes of patients. (00:08:14) So we (00:08:16) so that that particular way of evading. The problem is not going to work either. (00:08:22) I want to assume then that despite the (00:08:25) fact that sometimes we find ways to stall on the issue to or to Simply somehow punt the ball and get it somewhere else. (00:08:34) It is a real dilemma. We're not going to get out of it. We can stall the insurers can stall for time. But (00:08:40) eventually the technologies will be refined enough that they will be acceptable (00:08:46) if the government has to pay for (00:08:49) this will only come about I believe parsley because we have changed their attitude on Health Care here (00:08:54) are spending I want to assume for the (00:08:56) purposes of my remarks here (00:08:59) that that bone marrow technology would become increasingly (00:09:02) successful in the years ahead. That it will show (00:09:06) gradual improvements with all potential users. And I think as mr. Sutton (00:09:11) suggested we will probably expand the number of conditions for which it can be used. (00:09:17) Now. I happen to believe that the real problems with the allocation of resources in this country are not represent or not represented by the failures in our health care System, but by the successes, it's the things that are going to work and work very expensively that pose the worst kind of problem for us. There's a Kind of Wonderful assumption that if we can just get rid of everything (00:09:39) that that's ineffective that cost too much for what it's worth there for (00:09:43) what's going to be left is what what is Affordable. I don't think that follows it all it seems to me that the history (00:09:51) of modern medical technology is that as Things become more except effective people want them more (00:10:02) and and the demand for them. (00:10:04) Increases very very (00:10:06) rapidly and once things are are accepted once things that are understood to be a efficacious (00:10:12) therapies. People are not willing to give them up and not willing to go backwards. (00:10:17) I think one can look at some of the early (00:10:20) technologies that have cost us a great deal of money to get a pretty good picture of the pattern and one that persists take the case dialysis a wonderful example of was originally thought it's going to cost in the vicinity of 400 million dollars a year, maybe maybe a (00:10:35) billion when it really got up (00:10:37) and running but we're now spending close to three bit over perhaps three billion dollars a year on that program. (00:10:45) So I want to assume in talking about this issue. I want to assume success and I want to also assume that the real (00:10:53) problems come when things are effective and there's no way to deny the fact that they are effective. Now, how do we go about trying to sort this out? (00:11:05) I want to say right off that. I don't think in matters of this sort that there is any perfect solution. There are certainly no economic (00:11:13) algorithm and there is surely no moral algorithm Rhythm or mechanical means of making these decisions (00:11:21) at best we can come up with the sensible reasonable Fair process is for coping with the questions and perhaps if we're lucky we can decide what the right questions to ask our but I see this as a kind of issue that (00:11:37) requires perhaps those (00:11:40) virtues and traits that are hardest to come by namely. We have to be sensible. We have to be balanced. We have to be sensitive to human needs individual needs at the same time as we're being trying to be (00:11:51) sensitive to the (00:11:53) more general public needs. We have to be very intent on fairness. Making sure that our Solutions are Equitable in the end though. We have to struggle we're going to have to (00:12:05) balance lots of things with no simple formulas for that balancing (00:12:10) what I run it really suggest you today is is to at least lay at a kind of rough approach to (00:12:15) that that balancing things that I believe we ought to think about that will not provide a perfect answer but then we will never find a perfect answer to this question. (00:12:28) Now what I'd like, I'd really like (00:12:30) to take go through three stages in my remarks (00:12:35) first. I want to argue that this is a real (00:12:37) problem and I'll say why I even have to raise that question that is it is a genuine and serious moral dilemma, that will not be gotten rid of secondly. I want to argue for a general set of priorities in the American Health Care (00:12:51) system and then (00:12:53) try to locate bone marrow technology within that set of priorities and thirdly I want to suggest Of some (00:13:01) criteria or at least things to think (00:13:03) about when it's a matter of deciding how much money to allocate to this particular technology. (00:13:11) Let me begin with the question of why this is a real problem. I think there are still a number of people who believe that we should not be discussing any kind of limitation rationing (00:13:25) allocation of resources because we're a (00:13:26) rich country that we audit we have available all the funds we need to do whatever we want and that somehow it's already a kind of moral cell Aid to be talking of any kind of boundaries. Well, I think there are a couple of problems with first of all we know from all kinds of public opinion surveys that even if the money is there there's a limit to how much people are willing to spend on on (00:13:52) health care as a practical matter. They are there. (00:13:55) We perhaps haven't found what the limits exactly are, but we know increased resistance, of course to spending more money on entitlement programs through either the federal or state government. We know there is growing resistance on the part (00:14:10) of The people to (00:14:13) Cuts cutbacks in healthcare benefits, they receive from employers but also an unwillingness to along with that to pay (00:14:22) more and more out of their own (00:14:24) pocket. So one way or the other people are will come up against the limit of what they think they should spend their ought to spend that that sets the boundary even if the money is there there are other things people want to spend it on and more. Generally. It seems to me and it we now spend twelve percent of our gross national product in this country on health care. We could go up to 15 or 20% is some argue but the question is, how do we want to think about the place of health and comparison with everything else? We (00:14:53) need in our society 30 years ago. We spend about six percent on Healthcare (00:15:00) and 6% on education. We still spend six percent on education. We're (00:15:04) up to 12% on health care of our gross national product. Is it because our kids are (00:15:08) getting smarter and smarter they're doing better and better. Relationship to the Japanese and the Germans and I'm we're going to be an (00:15:14) industrial power in the years ahead because our kids are so well educated. Well (00:15:19) answer that one for yourself. Meanwhile, our healthcare system has gotten better and better (00:15:24) in many respects. Our statistics are wonderful things are going (00:15:27) up all the time education is going down how in the world can we justify that? And of course if you look around the country, we have enormous problems of poverty. We have enormous problems to take the (00:15:38) Federal Highway System estimated 400 billion (00:15:40) dollars simply to keep up the highways estimated. I'm gonna be 20 25 billion dollars in New York City alone just to repair the (00:15:48) bridges over the next 20 (00:15:49) years. There are lots of important things to spend money on in this country other than health care we could turn the country into one (00:15:56) big hospital. So that's all we care about health. Is that what we do in the United States, (00:16:01) but of course you couldn't get to the hospital because the roads would be so lousy. The people in them couldn't do a good job because the school system was so poor (00:16:09) and you wouldn't want to get out of them because The cities and (00:16:13) the parks and everything would be decaying so we can't spend all of our (00:16:17) money on health care, even if we might be (00:16:20) it would be foolish I would argue to do so, so I think the problem is is very real. It's been suggested that if we could simply have a more effective economically efficient Healthcare System, (00:16:31) there would be no problem. (00:16:33) Well, this is surely true in (00:16:35) theory estimates are we could say fifty to a hundred billion (00:16:39) dollars a year if we would simply assess our Technologies better get rid of the malpractice problem reduce excessive physician fees control the price of drugs. (00:16:49) There's a long list of ways that we could save money. The problem is (00:16:55) human reality. We have been working on Cost (00:16:58) Containment and cutting the (00:16:59) fat as it used to be said for nearly 20 years. Now, we've introduced drgs, we've introduced pressed for expansion of hmos. We've the Reagan Administration was big on Competition despite all of these tactics (00:17:15) the inflationary rate of healthcare keeps going up last year at that rate of increase was 11% (00:17:22) which was higher as it turned out from the three previous years. So one really has to say sure and some Ideal World. We could (00:17:30) have a (00:17:31) more efficient system, but we don't know how to do it and I've come to think that we will not effectively control our costs until (00:17:37) we understand that we are in a situation of rationing and limitation and really get serious about the matter effective Cost Containment effective economic (00:17:47) reform will look feel taste and smell just like (00:17:51) rationing because it will require that we say no to people who require that we put in (00:17:55) in place standards that will make make positions on happy that will make manufacturers unhappy and I think we have not we somehow think it's (00:18:06) either we ration or we become more efficient. I think the to have (00:18:11) Go together. The only way will become (00:18:13) more efficient is to understand that we have to ration now. (00:18:17) So I think the problem is the serious one and in any case even if we could reform and have a more efficient Healthcare System. We are in fact faced with an aging population and we are in fact (00:18:29) faced with the constant Ingenuity of (00:18:32) medical research, which is likely to turn up more and more (00:18:35) expensive life is saving life extending life improving Technologies in the years ahead with an aging population that we know we're going to have more people who are (00:18:46) coming into that time of life and they're likely to be sick and that's going to be combined with with the constant presence (00:18:52) of medical progress, which is going to turn up more and more ways to keep their lives going. So and this I believe is clearly born at when one looks at (00:19:06) the European Health Care Systems, which have already have in place many of the reforms that we are looking for. (00:19:11) But they too are beginning quietly to talk about rationing. They too are beginning to say what are we going to do about it? Thus increasing public demand The increased sophistication of the technology and the fact of Aging (00:19:24) so there's a real (00:19:25) problem there. It's not going to be wished away. (00:19:28) Now, I believe that if we are to seriously (00:19:32) cope with these allocation problems in our system. We're going to have to do a number of (00:19:37) things at the very least. We will have to carry (00:19:39) out the the numerous reforms suggested and I don't want to in any way be taken to suggest that I minimize the importance of doing something about malpractice or better technology assessment the (00:19:52) or controlling cost across the (00:19:54) Line This is terribly important, but I think there that we have to understand that the problem is a deeper one. In fact, I believe that we are going to have to make some fundamental shifts in underlying values to deal with the health care System very generally and bone marrow technology technology specifically, let me suggest that the five areas of value change that I think are fundamental in the (00:20:19) years ahead. First of all, we're going to have to (00:20:22) restrain our appetite for unlimited Tecna unlimited medical progress and unlimited. It Improvement in medical technology. (00:20:31) There's probably no value deeper more deeply embedded in the American Health Care System particularly in the research side of that system, then the value of endless (00:20:41) progress. There are (00:20:42) always new and (00:20:44) Open Frontiers in medical research in the conquest of disease in the saving of life. (00:20:50) I believe we're going to have to (00:20:51) recognize that it is increasingly expensive (00:20:55) to push those Frontiers for out that there are many things that we would like to do that we will not be able to do it will not be a matter of stopping progress at turning back the clock but but but of understanding that medical progress is like (00:21:10) many other good things in life, you (00:21:12) can't necessarily have all of its you want. You have to slow down and be careful in particular. It seems to me we're going to have to be much tougher on assessment the (00:21:22) assessment of new technologies coming into the system. My picture is a kind of a funnel where you have a A lot of basic biomedical research going on but but the move from that research level (00:21:35) to putting things into the system (00:21:36) would be much tougher than at present there. The funnel will get very narrow the standards get higher and I will come back to that. (00:21:44) Secondly. I believe we're going to have to have a much greater emphasis on public health and on individual health that is to say we're going to have to ask them different questions. We're going to have to ask. What is the what is the general state of health in this country as distinguished from what (00:21:58) is the state of health of people suffering from cancer (00:22:00) heart disease or stroke? We're going to have to ask the (00:22:02) question. How much health (00:22:04) do we need as a society to function will is it is it the case that the be a good Society? Everybody's life has to be saved and definitely or is it not perhaps the case as I would argue that we (00:22:15) already have a very high level of Health in this country. We have a perfectly we can give people a reasonably good average life expectancy. Is it necessary (00:22:24) that (00:22:25) that we (00:22:25) will be a better country if we could get life. Expectancy from 75 to 85 to 95. I'm not convinced of this (00:22:33) in any case an awful lot of American Health Care system. I think of dr. Stars was pictures of Sally its individual Focus. We respond to the (00:22:41) individual need I think we have to begin asking (00:22:44) what is the level of our Public Health in particular? What is the level of minority and other groups that are below this General level? How can (00:22:51) we bring them up and perhaps recognize that in terms of Public Health. We can begin plateauing we don't have to keep (00:22:57) going forward in general. We may want to work here and there but in one sense, it's important to (00:23:03) keep in mind one simple thing. (00:23:05) We are now the longest-living healthiest people in the entire history of the human race, not a bad accomplishment. (00:23:13) Third. We need a better balance between caring and curing (00:23:18) our Health (00:23:18) Care system has been heavily oriented toward cure. That's where the (00:23:22) money is gone. (00:23:23) That's where the drama has gone. Look at the patterns of spending it NIH (00:23:28) Those diseases that cause mortality get the money those that bring back morbidity tend to always be in second place. (00:23:39) Now when I talk about getting a better balance between caring and curing I want to stress one thing in particular, it's not simply I'm not saying (00:23:46) that we have a impersonal inhumane Healthcare System (00:23:51) in Men in some places that more but more fundamentally what's striking to me is that what we see in this country is a rising burden (00:23:59) of chronic illness (00:24:02) arising burden of people who are disabled arising burden that is of people (00:24:07) who are (00:24:09) sick and who are not going to get well and indeed to me the most important trend (00:24:15) of all in American (00:24:17) Health Care indeed in the western world is a declining (00:24:21) mortality rate for just about every age group a combined with an increased rate of morbidity. That is to say we're (00:24:28) Paying for it for a longer lives by having a sicker population (00:24:33) and a secret population one sense. That's the mark of success of an unsuccessful medicine people (00:24:38) simply die the kind of successful medicine. We have keeps people alive, but it doesn't always make them will (00:24:46) and indeed we're seeing more people who are alive, but are going to be sick for the rest of their lives. So we're going to have (00:24:52) to help health care system that has to cope with a chronic illness and I the future I believe belongs to chronic illness that when I talk about caring it's not just the human touching side so to speak but but simply because of (00:25:04) this large increasing population of people whom the medical system has (00:25:08) got to cope with in (00:25:09) some real fashion a serious fashion because they are going to be part of our community and a growing part in the years to come (00:25:18) fourthly. I believe we need national health insurance. They're like, I won't go into different possible ways of doing it, but it seems to me (00:25:28) At least for the sake of Justice we have to deal with the large number of people who are (00:25:31) uninsured but also as a matter of efficiency, we have a normal sleep fragmented chaotic kind of system. We pay a high (00:25:38) price for our pluralism some kind of a unified system would help us. I believe reduced bureaucratic costs would help us perhaps better (00:25:49) regulate the placement of Technologies would help us better to control (00:25:54) cost across the (00:25:55) system. So for both reasons of equity and reasons of efficiency seems to me we need we need some kind of system that will guarantee that everyone (00:26:04) regardless of income has some minimal level of decent Health Care finally and most important for the (00:26:12) rest of what I want to say. We have to accept the idea of limits. We cannot we (00:26:16) ought not to allow ourselves to think in the future of (00:26:20) endlessly Open Frontiers that we pursue we have to (00:26:23) live with the sense of a more bounded finite World in medicine and health care. (00:26:28) And once we accept that notion and we ask all right, we have to if we say yes, we're going to have to live within boundaries. What do we do then? I think the next obvious question is well, if you have to live within some kind of (00:26:38) boundaries, what is the fairest way of doing? So what is the most reasonable way of doing so (00:26:43) I believe that leads one to an obvious conclusion namely you'll have to (00:26:47) set priorities of some sort. You'll have to decide what is comparatively more important to provide people and what is comparatively less (00:26:55) important what a people desperately (00:26:57) need. What what do they need strongly and what at the other end of the spectrum (00:27:04) they perhaps desire but can can (00:27:06) get by without I happen to think the (00:27:10) experiment in Oregon is a very healthy one. We don't know the outcome, but at least there is an effort has been made to recognize that the necessity of living within limits and then and then to try and (00:27:22) develop a priority system accordingly now, let me give you my own. We'll set our priorities as I look at the Healthcare System. I begin with the problem of caring and (00:27:36) curing I would make caring the (00:27:38) very first priority of the Health Care system. Not cure for a very simple kind of simple logical reason if you (00:27:45) will namely cure will run out on all of us someday. We have not conquered death. We're never going to conquer (00:27:52) death. There is going to be some point in our lives where we are going to need care because cure will not be available and If (00:28:01) the trend and chronic disease disease and illness continues, (00:28:05) we know that more and more of us are going to need care as the year goes on. (00:28:10) So I would say Karen comes first non abandonment relief of pain and (00:28:14) suffering long-term care home care for people whom the system cannot cure (00:28:20) the second priority Public Health this of course is the standard things of nutrition sanitation (00:28:27) immunization providers. (00:28:28) Mention efforts screening programs that is to say those well-known (00:28:32) measures that that in general increase the health of populations in general (00:28:37) thirdly access to primary and Emergency Care everyone ought to have access to a primary care physician for at least (00:28:45) diagnosis for at least relatively simple treatments. (00:28:50) We all ought to have access to an emergency room. Now between the among those three things the caring of Public Health Access to primary medicine that seems (00:28:59) to me that's where I would build a sort of a minimal health care package. But of course there is still more we can do for people we can move people Beyond out of the primary care (00:29:10) physicians office (00:29:12) into more complex (00:29:14) Technologies as surgery (00:29:18) more complex surgery complex (00:29:20) expensive drugs chemotherapy. (00:29:24) What have you that's still another level and finally Lowest priority would be Advanced (00:29:31) expensive High Technologies high technology medicine that affects (00:29:37) comparatively few people in comparison with the overall population at but at a very high cost at the same time. So my priorities then I start with the working with the public base and then coming down to the expensive Technologies as last in line for priority setting. (00:29:55) I'm struck in at least in New York City this being maybe as a (00:29:58) more civilized city than the York, (00:30:00) but what's happening in New York is really shows just the (00:30:04) opposite of what I (00:30:05) think is important and if you go and say Hospital like Columbia (00:30:10) Presbyterian a very old very distinguished Hospital teaching Hospital of college of Physicians and (00:30:14) surgeons. The emergency room is absolutely lousy. You don't want to have an axe auto accident anywhere in that (00:30:21) neighborhood because the emergency room is is (00:30:25) many most of the day is a mess. You will wait. (00:30:28) It's under staff. It's a terrible (00:30:31) place up to where they're doing the heart transplants calm orderly. They got money there. Everything seems to be working very well. (00:30:40) This is that I think this is (00:30:42) that many of you were patients of (00:30:43) course and going through the emergency room, (00:30:45) but somehow it's all wrong somehow you would hope that the very base to (00:30:49) the healthcare that hospital. This is where things ought to be ought to be nice and people want to get what they need. In fact, the people shouldn't have to get their primary care that's in a poor neighborhood and he get their Primary Care by showing up at the emergency room. That's a crazy way to run things too. So what I'm really suggesting is that we fundamentally find a way to shift shift the balance and start the priorities with with the caring needs and the public health needs and then and then last the high technology (00:31:18) medicine now to say last though is not to say not (00:31:22) at all. Keep in mind. I'm talking priorities here. We are a wealthy country. Can afford some degree of high technology medicine is not a matter of saying no to every expensive new technology, but it's a matter of saying well, maybe perhaps it all depends and that brings me to my last last part of my comments. (00:31:49) Let us assume (00:31:51) that we (00:31:52) agreed for some we need some priorities. How do we get? How should we try to think (00:31:56) through bone? Marrow technology? Let me suggest a number (00:32:00) of questions. These are not rigorous criteria. They (00:32:04) need to be refined and Polished but a checklist if you will of things to think about first of all (00:32:12) before providing this technology have we taken (00:32:16) care of the lower level priorities? (00:32:19) Is it the case that (00:32:20) we have in place good Public Health measures that we have in place good caring programs that Have the people have access to primary care (00:32:32) if that's if it is not the case that we provided those fundamental Services then it seems to me there is serious reason to ask (00:32:40) why in the world (00:32:41) should we would be adding this new and very expensive service when we haven't even dealt with the more minimal more fundamental (00:32:47) more primary things. First of all, (00:32:49) why should we allow an expensive new technology? So to speak to jump the queue? Why should we allow the heart transplants at Columbia (00:32:57) Presbyterian to be well-endowed well supported when the emergency room is so poorly run and so poorly supported (00:33:06) secondly do we have the (00:33:08) best available knowledge of (00:33:11) the costs and benefits of the technology. This is something one obviously has to say (00:33:17) do we do we understand? Mr. Sutton's show to some of (00:33:22) the possibilities there. Have we run through that (00:33:24) scenario? Have we tried to look down the road and I (00:33:28) think one of the things that we fail on most in this country is we don't look down the road long (00:33:33) enough. I'm struck by the fact. He'll time goes (00:33:36) by rapidly five years that is is a no (00:33:39) time at all and 10 years is no time at all. (00:33:41) We've got to ask with our (00:33:42) Technologies when we try to assess them. (00:33:44) Not only the short-run gains, but what it's going to do to us in the long runs. What are the projections look like? I think it's also important to keep in mind I happen what seems to me a fairly obvious principal historically that it is. It is almost always the case that the price of individual Technologies comes down, but it is almost always the case that as the as the (00:34:08) price comes down. The pool of users expands. (00:34:12) Nobody will buy TV sets when they are five (00:34:14) fifty thousand dollars as was the case of around 1940 and there weren't any shows on anyway, but (00:34:22) get him down to a hundred (00:34:23) dollars. Everybody wants one. The aggregate cost of TV sets is enormously higher. When there was only one available at a high price (00:34:31) so too with most Technologies, it's interesting the case of dialysis a wonderful case. They really kept the cost of (00:34:38) dialysis down. In fact, it's lower in (00:34:41) comparison with inflation than was the case when the program (00:34:43) started but meanwhile the number of users that has (00:34:48) increased enormously and it is said they are older and sicker is the rule (00:34:53) of fastest growing group on dialysis. Are are those over the age of 70? So I (00:35:00) think one has to assume that with technologies that (00:35:03) we when people say well but it'll save us money in the long run. We'll keep in mind (00:35:07) we may be saved we may have a unit (00:35:10) savings. But but if it's really successful the demand for it will grow and the aggregate cost will increase (00:35:18) moreover. I think it's important to the think of aggregate cost in another way. We are not when we are here today simply looking at (00:35:27) bone marrow. Technology, but what about all the other new technologies that are coming online these days which are awfully expensive as well erythropoietin which (00:35:39) improves outcome of dialysis enormously expensive the new drugs for schizophrenia for depression all of those very expensive. We could have a wonderful time. We could probably bring representatives of 10 or 12. It groups in here going to tell you the wonderful benefits of (00:35:55) each of these new (00:35:56) technologies, but we tend to look at them. Only one by one. I think we have to begin laying them all out side by side and say what is the cost of this total package and then begin comparing (00:36:07) some of them with each other the problem with looking at them one by one (00:36:11) is you sort of get misled because you think this is the only (00:36:14) thing in the world but lots of other things are going on simultaneously and the Very nature of our technological progress is to is to keep expanding the possibilities. It seems almost (00:36:29) We have to ask questions about the short-run benefits to individuals. (00:36:33) And of course that's that's commonly done now, but also the long-term consequences for for society what will happen if this (00:36:43) technology continues to improve what will it do to the rest of the healthcare system? Will it perhaps a block at other things in the years ahead. These are hard questions to answer one of the things that I think we should keep in mind to bed programs (00:37:01) like like dialysis and say organ transplants more generally (00:37:06) least those covered by Medicare is that they've scared legislators, they've scared legislators because they they know that these programs once you put them in place that you can't go back on them very very well and they continue to expand (00:37:20) it's almost as if you're writing a kind of blank check and I think (00:37:23) there's enormous nervousness about that blank (00:37:26) check kind of process it. It's (00:37:28) me. In this case. We're going to have to ask about if this gets in place if it's successful, what is it going to do to the Healthcare System 10 or 20 years from now when it's really in place will it push other things that will it block other things coming in? (00:37:41) These are questions to be asked now (00:37:45) here comes a very crucial question. Where should the burden of proof lie should the burden of proof be on those who want to stop the technology saying slow down or should it be with those that want to go ahead this makes a great deal of difference. I think in the past the prediction if you will or the practice in this country has been that we allow all of our technological flowers to bloom and then we ask questions then we met if we have problems that look back and say well if my guys maybe we've got to think about this do we want to limit it to we want to cut back what conditions but we let things just get out (00:38:26) there (00:38:27) because We've sent because we believe in progress. We think it's a good thing to go forward. So anybody that wants to stop progress we placed the burden on that person to come up with with the objections. And of course that's very hard to do. If you're dealing with human life people said well, if we don't do this people are going to die and they also say of course that the beginning programs. Well the cost they're manageable here. We can afford (00:38:49) this they don't talk about the 10-year 20-year (00:38:51) course, they talk about next year's cost and that always is that's feasible. So given the enormous bias in favor of progress. It is it has been the critics and the (00:39:02) naysayers who have had to try to slow things down. But what if we shift (00:39:05) the burden we could of course say given the high (00:39:09) cost of the Healthcare System given the fact that so many of our Technologies (00:39:14) are increasing the cost of the Healthcare System given the fact that they don't always give us such a (00:39:19) terrific outcome. Anyway, (00:39:20) what if what if we make those that want to introduce things let them bear the burden of the proof let them prove in Vance if you really want to be tough that this is going to be a wonderful thing that really will save money in the long run that it (00:39:33) really will be efficacious that that it really is the only possible way of going I myself think that (00:39:43) we are have reached the point where we are going to have to shift that burden to prove that the technological enthusiasts are the ones that have got to prove their case. (00:39:53) Not not the rest of us. The rest of us I think have enough evidence in hand that we have a system that is getting more (00:40:02) expensive than we can cope with and particularly being bedeviled by increased number of new technologies that are making (00:40:09) things a worse not better at least economically therefore it seems to me those that want to come in with new technologies. They're the ones that have to answer some of the hard (00:40:18) questions. They have to show benefit. (00:40:21) They have to show (00:40:22) long-term social gain, they have to show efficacy (00:40:26) and they have to show that (00:40:28) Claim in particular is a greater claim than others. If one wants to push bone marrow transplantation, (00:40:34) then show why this is (00:40:35) more important than say improving our childhood immunization in our society, which of course is going down as transplants of going up why it showed that it's a good thing that this is better than improved prenatal care something else, (00:40:49) which is also decline. In other words show also that this is a better way of (00:40:55) spending money than the money for the schizophrenia drugs in short put those the the Enthusiast it seems me have to be forced to answer some difficult questions to be seen in a kind of (00:41:10) competitive mode. If you (00:41:12) will and not have a the past situation where it was sort of easy to get everything in because we thought progress is that by definition a good thing who can ask questions (00:41:21) about it. Well, my suggestion is that we have to ask questions about it. (00:41:26) Now one question that that obviously has to be dealt with here given that this enormous (00:41:34) tension between overall public needs if you will and the fact that these Technologies save lives is how do we try to think (00:41:44) about the value of human life in this in this context? It's been argued effectively that one of the great difficulties with (00:41:52) technology assessment as a movement. That is the effort to really (00:41:56) determine what treatments are (00:41:57) efficacious and and which are not and (00:42:00) what's your cost beneficial in which you're not is that that there seemed to be a certain class of technologies that (00:42:06) Trump all others where we throw at the usual standards and these are some times when coal rescue technologies that is to say in general. We're all in favor of assessing our (00:42:15) Technologies, but when it comes to something that will save a life (00:42:18) that's forget it then we simply then we simply go forth (00:42:23) and and understandably go for it. Suppose the model here is however poor of the (00:42:28) City of Minneapolis are ever however poor New York City might become if a child falls down (00:42:34) a sewer and it cost a million dollars to get that child out of the (00:42:37) sewer, you know, the money will be there and that will be done. (00:42:42) So there's there's a Kind of (00:42:43) Rescue mentality which throws out a balance and cost (00:42:46) benefits we go for but the problem is you can do that. If it's a relatively rare kind of a situation if (00:42:55) it's only once in a while that children get get full down deep pipes (00:42:59) and things you can spend if the begins happening as a regular thing. If it begins becoming then I suspect even there when would begin taking in somewhat different attitude and of course with these rescue Technologies, it's one thing when they're new they're experimental that they dramatically save lives but it's another things when they become widespread the cost become (00:43:21) very high. They are there still saving lives, but the overall so (00:43:25) She'll (00:43:26) impact is great. (00:43:27) How do we how do we think about that situation? (00:43:32) Well, I I believe that (00:43:36) as a general principle the saving of Life cannot be allowed to Trump every other (00:43:42) consideration. It's certainly important. It's a fundamental goal of medicine to save life, (00:43:47) but it can't be the only the the the only (00:43:51) possible goal or the only possible value (00:43:54) certainly it in our situation of some de facto a limitation in any race the the save life of one person may in (00:44:03) fact be to limit what you can do for another person. (00:44:07) So you may often (00:44:09) we see the benefits were doing to some individuals but we less rarely observe the things that are for gone for other individuals. So at least if nothing else in a face of limitation, you know, if you give to a you may well be and are likely to be taking away from be (00:44:26) Secondly, this is a complex question. I can't pretend to have a full answer to it. How do we balance off the saving of Life over over against other (00:44:36) things that that bear on the quality of life, but but don't necessarily save life that is to say (00:44:45) I don't think it would be (00:44:47) reasonable for somebody to come along (00:44:50) and say let's cut out (00:44:52) long-term care for Medicaid all together much less than prove it. Let's cut it at all together and throw the money into in the saving lives from cancer and heart disease. (00:45:02) We said because saving life is (00:45:04) certainly more important than caring for people in long-term care. (00:45:07) Well, I think that would be ridiculous. However, (00:45:09) if we say that saving of life is (00:45:11) important then of course we take money from everything that doesn't save life to that one go but I think if we recognize her balance (00:45:17) Health Care System, there are other (00:45:19) human needs than to have have lives saved. So the (00:45:23) argument that it that you can't place a value on a human It's a that's (00:45:26) the thing that comes first. I think has to be limited by (00:45:30) respect for other health care needs that are important. I mean (00:45:33) once you're alive then what (00:45:35) if your life is is terribly miserable if you've been saved by the dramatic rescue technology, but then you're chronically ill the rest of your life and you (00:45:44) can get no care for that chronic illness. It's not clear that (00:45:47) you've had a gain at all. It's in fact, you may be worse off by virtue of having your life saved for a miserable number of (00:45:55) years to endure in a poor condition moreover. Of course, I would want to ask o even a harder larger (00:46:02) question to what extent is it valuable to (00:46:04) save life when the school system is lousy or the roads are falling apart. You've got to do a little of that measuring to how do we come out with some coherent balanced view of thing? (00:46:14) All of which is to say the saving of life is a primary fundamentally important value in Health Care system (00:46:21) and in our society, but it's not the only (00:46:24) one. (00:46:27) I think as well. It cannot be the case is sometimes argued that because we ought to respect human life we ought therefore to (00:46:36) invest unlimited resources in finding ways to save and extend life. (00:46:40) It is sometimes argued that my gosh if we could find a (00:46:43) cure for there would be no moral reason and not to (00:46:45) go forward to (00:46:47) taking area quite apart from this. There are those that say we have to map the human genome we have to engage (00:46:52) in genetic engineering because if we don't do this, we won't gain the knowledge that (00:46:56) someday will save the lives of thousands of people who will die from genetic disease insert. It's made a kind of moral imperative as if the only way to respect human life is constant medical progress. (00:47:07) Well, I happen to believe that (00:47:09) mortality is part of our condition human condition that it is the case that we must all die (00:47:16) and it is also the case that we have to Fashion a generally (00:47:19) viable balance the life for ourselves and it is not it is not going to be (00:47:26) ultimately fulfilling simply (00:47:28) to try and Always break the New Frontiers of (00:47:32) extending life unless we have been pretty sure that we have created (00:47:35) behind that life a decent society and a broadly based Healthcare System. Okay. Well, I think I want to stop I've tried to lay out some things. These are only questions, but I suspect if we (00:47:49) can can try to (00:47:50) deal with questions like that. We won't get any clean answers, but at least we might have some assurance that we have have dealt with the issue in a prudent way in a reasonable way in a morally sensitive way. Thank you. (00:48:09) well (00:48:13) There are obviously a variety of mean obviously you could become an international agitator of these issues. That's when there are groups of people trying to change her form groups. You could join to change the American Healthcare System to set priorities and the like you could also work within present organizations. And let's assume one is part of a Group Health Organization in these issues come up then it seems to me one can then effectively try to work out an agenda of the questions that the group that ought to be dealt with by this particular entity as it tries to make its own coverage decisions. What are the things that ought to be thinking about? What are the standards that should be using in short? You could begin right at home within your own Insight. I don't know (00:48:57) what you happen to do your own institution and say, how can we (00:49:01) how can we Foster a kind of structured Dialogue on these matters that might help us to work them through I think what strikes me there couple of things that I wish every institution would do and that is First of all did start doing some comparative work, I'd love to see I'd like to see a conference getting in people from (00:49:21) 10 10 groups Each of which has a new expensive technology in the Horizon (00:49:25) and let them talk among themselves as to how they would balance make their own claims and counterclaims. Let's hear them argue with each other. If you will typically in a kind of interest group Society things are done by one by one. I would like to see some people organize some really talks across these different fields. I'd like to people in mental health talk with people in transplantation about the allocation of how do we how do we compare our mental health issues over against life-threatening issues of cancer organ failure of the like I would raise the question who should be in on these dialogues. Who should how do you get a good mixture of professionals and and lay people trying to make sort of these decisions as well? (00:50:08) So I but I seem to be the simplest thing is to start at home working within your own institution and see if we can find (00:50:15) Ways to structure a debate and discussion that will again won't give us (00:50:21) perfect engines, but at the end of the will say look we've done we've gone about it in a pretty sensible (00:50:26) Fair reasonable (00:50:27) fashion. I (00:50:29) mean, I think the political problem is a very difficult one first of all because we are we we're in an economic slump many the federal government as a large deficit many of the states have large deficits. This is not a time that encourages legislators to be introducing new programs and new initiatives. And that's what they say. Look we've got a terrible New York state has got a in theory of kind of universal health care plan, but my gosh Shivan como como is faced with enormous deficit. He's not about to begin pushing that so that some practical problems, but I think just as important is the fact that legislators at this point don't really feel they have the American public behind them with many of these reforms public opinion surveys indicate that health is a it's there (00:51:12) as a concern people are unhappy with the Healthcare System, but it's not (00:51:16) up there with with drugs or crime in the streets or jobs. It's simmering and not exploding and and I think legislators (00:51:26) occasion you find some that really will stick their But they're not going to stick their neck out. If it's obvious from every public opinion survey that this is going to be so unpopular that they're going to they're just they (00:51:37) cannot possibly win. So my question really then is how do you begin changing some public attitudes such that the legislators will feel some nerve to take on some things that right now are not very popular my own guess is that when the middle class in this country begins hurting then we'll see some action so far has been mainly the poor people in this country of hurt. Do we have some who the uninsured there others but middle class people employed middle class people have by and large been pretty well taken care of in the are present Health Care system through their employer provided insurance. (00:52:15) I think as time goes on we're going to see those (00:52:17) programs constantly restricted more people going to pay more out-of-pocket. They're going to make more nasty choices and then people say my gosh this Health Care crisis is my crisis is not just a poor people problem. Then we'll have then the stage will be set. But but until that (00:52:32) happens, I suspect that most people are still at least middle class people the kind who influence vote (00:52:39) legislators who have go ahead and vote who are (00:52:42) able to get on the telephone and write (00:52:44) letters to legislators. These people (00:52:47) have not been hurting that much and only when they hurt will things really change I suspect there's another thing which is a more subtle transformation. I think people have Are going to have to also begin wondering just how much of (00:53:02) the medical progress do they really want (00:53:05) and the one strong the wind (00:53:07) I see here are the large increasingly large number of people who are fearful of dying at the hands of medical technology. They don't want to die in the ICU. And this is everybody's enormous fear. They don't want the tubes the image of dying with the tubes and impersonally or being saved in the ICU to end up one's years in a long-term care facility is demented persistent vegetative state. What have you (00:53:34) I think this is beginning to introduce some second thoughts (00:53:36) about the very progress itself. Everybody wants these wonderful this wonderful (00:53:41) Technologies, but maybe not too much of it and (00:53:43) let's be a little careful. Let's be a little weird. (00:53:46) My analogy is I wonder whether in (00:53:48) medicine will see something like what happened in the environmental area that is to say when I was growing up (00:53:55) everybody said wow something they want to build a new Factory. Town isn't that wonderful. I'm going to just going to bring jobs and money and isn't this is just terrific (00:54:04) now somebody wants to build a new Factory who said I've got to go an (00:54:06) environmental impact statement. Is it really going to be a good what's going to do the environment? They say going to bring new jobs? What will this really help the tax base and will bring new kids in the school, but maybe this won't be so great for the school system in short. It's very hard to build a new Factory these days because we've changed their attitude. We don't what was once considered progress. We now we have mixed views where say yeah, maybe we want the new Factory but you must prove a b c d e f and g in order to get it here will we see something like that happen in medicine? I (00:54:37) suspect so as we see this combination of very high prices mixed results (00:54:44) a lot of things that will make us think well look medicine. I think for a Time medicine had a kind of free run. It was the one thing that only did good and no harm when we had plenty of money. Everybody's we're constantly improving lives are being saved. Isn't this wonderful. Now? I say my gosh. It's like the rest of the world has a lot of good things and it's sometimes that's the bad things that cost you a lot of money in always get a great value for your money. It's short it's (00:55:09) it's so to speak been brought off its pedestal and now we're looking at it in a more sober fashion. And that might I think once we begin thinking of it that way then of course the public may change and that will James the legislators. That's my scenario, but that's not a fast scenario that takes time but I'm struck by the fact that just over the past four or five years how people's attitudes are changing and I think fact I almost don't talk about anymore for five years ago when I talked about I've got a set limits be (00:55:41) half the audience. What do you mean? This is Rich country. We don't have to set any limits. That's terrible. That's subversive talk. I don't find anybody people aren't then I said, (00:55:49) ok. You may be a right (00:55:50) time. You know, there's a kind of acceptance. I see shifts and changes already.