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8 The Legislative Perspective John D. Rockefeller, IV We on the Pepper Commission fU.S. Bipartisan Committee on Compre- hensive Health Care] are charged with developing a public consensus on long-term care. Catastrophic illness costs $5 or $6 billion a year, a mere pinch. Long-term care costs $40 to $60 billion. And for the uninsured, one must simply grab some figure in the tens of billions. The bill for our nation's unmet health care needs is just extraordinary. The legislation on catastrophic illness coverage has been a subject for many speeches. It is an extraordinary thing, isn't it, that a program which is so directed, so progressive, and so precisely right-a rare thing could be rejected by precisely those people who have no business rejecting it, on behalf of all those people who benefit from it. But that is what has happened. UNMET HEALTH CARE NEEDS I was recently in Chicago, where I attended a hearing of the National Commission on Children. Much more important than that, perhaps, was a visit of commission members into ghetto areas, into housing projects, to see how it is there. First we started at Cook County hospital and saw prema- ture, low-birthweight babies who weighed a pound and a half. Some got to two pounds, some to two and a half. When they got to four pounds, they looked like they were really healthy, and one rejoiced; but we did not see many of them weighing four pounds. There were endless numbers of low- birthweight babies. Should they emerge at a cost of some $50,000 to $100,000 per child from the intensive care unit, most of them will have permanent developmental disabilities. We went into the housing projects to see what is happening there if it is possible to get in, if the gangs are not already there, which they are in most 44

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PERSPECTIVES ON EFFECTIVENESS AND OUTCOMES RESEARCH 45 of the housing projects. And there we saw how it is that teenagers who discover they are pregnant at the age of 14 or 15 do not go looking for something called prenatal care, especially since many of them do not even know what it is. If they do know, and if they have applied for Medicaid (or should be on Medicaid, which only reaches 42 percent of poor people any- way) and Medicaid keeps sending the forms back, they will have already had their babies by the time they get signed up. And so on and on and on. We are in a crisis. The dimensions of it-not just the financial dimensions, but the human dimensions as well are awesome. I am a relative newcomer to health care. I asked somebody the other day, whom I very much respect and who has been in this business for a long time in Washington (not in Congress), how many people he thinks there are in Congress who understand health care. He said, "Six." I was not one of them, unfortunately. But give meia little time, and I will be, because I am intensely determined about it. Since I am not one of those six, and since I am a relative newcomer, it is probably not very good for me to presume to make observations. Nonetheless, I will do so. It strikes me that we are at a dangerous crossroads. We have literally hundreds of billions of dollars' worth of health care needs that are as yet unmet, some as yet unthought-of. I completely agree with Uwe Reinhardt about the concept that a civilized nation simply will not tolerate having 37 million citizens who are uninsured, not to mention those who are underinsured. How do we rectify this? America has apparently fastened onto the con- cept of no new taxes, after having reduced taxes and having removed $150 billion from the revenue base of this economy every year since 1981. On further reflection, however, some Americans have decided that lowering taxes was not a good idea and that we should think about raising them. So the two parties argue about whether we should lower them again and how- capital gains or IRA? It is all sheer madness, if one cares about health care. Health care costs are rising 14 to 15 percent annually. By 2003, Medi- care costs will be larger than Social Security costs. Defense spending, interest on the national debt, and Social Security and Medicare costs together account for 85 percent of the entire federal budget. Those who would cut costs, including Medicare payments, face the wrath of the providers. Those who would add coverage, and thus the payment for it, face the wrath of the taxpayer and, we now discover in the case of catastrophic care, of the beneficiary. We risk gridlock because everyone with a vested interest in our current system providers, employers, patients, insurers, and taxpayers has something to lose from the changes that must be made. On the other hand, I think that all of these vested interests have a lot more to lose if the changes are not made. There is evidence of stress in the system. The budget reconciliation

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46 EFFECTIVENESS AND OUTCOMES IN HEALTH CARE process was tied in a knot over catastrophic illness coverage. The coal strike in West Virginia and the "baby Bell,' strikes this summer grew out of arguments over who would pay health care costs. One-pound babies like those I saw in the neonatal intensive care unit are still being born. The list goes on and on. We have to find a consensus somehow, and we have to do it very quickly. We need, as never before, those persons who are most knowledgeable about our health care system to help us reach that consensus. We need people who know what is at stake and who stands to lose in the process of trying to forge this consensus. That is where scientists fit in, at least in my judgment. GROWING AWARENESS OF EFFECTIVENESS RESEARCH This conference is incredibly timely. The answer to the question "What works in health care?" probably holds the key, or at least part of the key, to the many conflicts that we will wade into. Two years ago, nobody on Capitol Hill was talking about medical outcomes and effectiveness research. Nobody. Nobody was really talking about the trade deficit until 1984, at which point we were already in the tank so deeply but that's the way we are as a country. The crisis has to overwhelm us before we recognize it and then sometimes we can get out of it. Now outcomes and effectiveness research, if not quite the talk of the town, are the tank of a good deal of it. A recent survey of over a dozen studies on the appropriateness aspect of medical care included these findings: "Research finds high incidence of unwarranted pacemaker implantation." "Inappropriate coronary artery bypass surgery is frequent." "Rate of inappropriate hospital use is high." "EThere is] evidence of anti-psychotic drug misuse in nursing homes." The potential benefits of outcomes and effectiveness research have jolted many of us into what I hope is the realization that evaluation of health services may not mean rationing in a pejorative sense. Some of us even hope that the dual efforts of controlling health care costs and improving quality are complementary. In the Senate, George Mitchell, who is not an inconsequential figure as Majority Leader, introduced a companion bill to the legislation authored by Willis Gradison on the question of federal financing of a national research effort on medical outcomes and effectiveness. Now Senator Mitchell has requested, as have many physicians' groups, that his bill be included in a much larger physician payment reform bill that David Durenburger and I are working on. The provision is integral to the success of our package. Our package does not have integrity without that research in it. Physicians and policymakers

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PERSPECTIVES ON EFFECTIVENESS AND OUTCOMES RESEARCH 47 understand that the process of rationalizing payments for services must proceed apace, along with the process to understanding the value of the services. THE CHALLENGE TO SCIENTISTS Today, the medical community and the political community are ready for research. We hope it will improve the quality of care; we hope it will save lives; and we hope it will make cost control more rational and more consistent with good medicine. I encourage your scientific efforts enthusiastically, pleadingly, but with two important caveats. First, do not take political support of this concept for granted. To wit: last week, the research community came within a hair's breadth of losing its congressional backing. Senator Mitchell believed that a minimum of $35 million was necessary to get this national outcomes and effectiveness re- search underway and he made a very strong pitch as Majority Leader to the Appropriations Committee. But that committee did not vote out the hoped- for funds. Only the personal appeals and efforts of Senator Mitchell won a last-second restoration of funds. Without him, it would not have happened. So understand, please, when I say that you cannot take support for granted, because nobody understands it. All of us will need to work diligently to protect those funds, because the bill has yet to go to the House-Senate Conference Committee. Be aware of that conference. Summon whatever influence you have and exercise it on that House-Senate Conference to make sure that outcomes research money stays. That leads me to my second caveat, which is that, as scientists and as experts, your advocacy is imperative. Last spring, Frank Press, President of the National Academy of Sciences, called upon his colleagues to unite behind specific scientific efforts. Do not throw them out Gatling-gun style; they have to be given priorities you must set priorities. The work that you are about here clearly must be one of those priorities. A nation that spends over half a trillion dollars for health care can afford to spend-in fact, certainly cannot afford not to spend $35 million to begin learning what works. Not only must your case be made to the public and to the Hill on the need for this research, you must be persistent in your advice on the nature of the research. The politics of where these studies should begin and what they should seek will certainly overwhelm you unless you give us your best advice on how to proceed. Because of the budget crunch in Medicare, Congress will urge you in one direction; that is, toward the effectiveness of the "big ticket" services. Pro- viders of those same services will urge you in a different direction. You

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48 EFFECTIVENESS AND OUTCOMES IN HEALTH CARE need to give Congress your objective advice on the best way to proceed. We cannot do it ourselves. David Durenburger is a Republican and I am a Democrat; we do everything on the Pepper Commission together. That is our policy. I am chairman of the commission, but he knows much more than I do-and I tell him that frequently. We and our staffs do nothing without talking to each other. We are trying to make our actions not only bipartisan, but bicameral. Most people in Congress do not operate that way. We are determined to, and you can help us. CONCLUSION Two years ago, health was not center stage; it was all a question of what are we going to do with ASATs and Star Wars. But interestingly enough, defense and all of the raging passions it inspires has receded in the last year and a half, and other things have come to the fore. That has happened, I suppose, because of the Gorbachev window, and I pray that that window will stay open for a while. People now are really onto the cost of health care, are really scared about the annual increase in the cost of that health care, and really do understand that there are very few people in Congress who understand health care. We need you scientists; more importantly, we know that we need you and what you are doing. You are called upon not only for the right answers, but also for politically compelling evidence that those answers are right, evidence that will help us forge a consensus and bring about needed actions. It is a tall order, but I know that you will do it.