Chapter 9_Policies and Priorities_pp 154-175

Chapter 9_Policies and Priorities_pp 154-175 - ~nine-...

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Unformatted text preview: ~nine- Policies and Priorities In the United States we would do well to make combating trau— matic brain injury a national priority. With the exceptions of heart disease, cancer, and stroke, traumatic brain injury is the greatest public health crisis that we face today. Compared to AIDS, brain injuries account for 60 percent more deaths and afliicts an even younger population, killing and disabling more children and young adults than any other cause. From the beginning of 1945 to the end of 1994, brain trauma caused more than 2.5 million fatalities and 25 million injuries in the United States. Clearly, we must take action against this epidemic. In recent years, we’ve made a start, but we must move forward more quickly and deliberately than we have in the past. Fortunately, the measures that I discuss in this chap- ter and the next are concrete and practical. Some of them will cost money, but many involve spending no more than we spend now. R E C O G N I T I O N The first step that we as a society must take to combat traumatic brain injury is to focus attention on it as a pressing menace to the health and well—being of us all. Although neuroscientists, rehabili- tation professionals, and a few journalists are taking more notice of brain trauma, the public profile of this epidemic remains far too low. Every year, about 800,000 Americans die from heart and cardio— vascular disease, about 500,000 from cancer, and about 150,000 from strokes. During that same period, at least 60,000 Ameri- cans die from brain trauma (a conservative estimate; others suggest 75,000 to 100,000), about the same number who die from Alz— heimer’s disease; another 70,000 to 90,000 survive but face a life— time of severe disability. Diabetes and its complications (including disorders related to elevated blood sugar but included in overall cardiovascular statistics) do kill more people—160,000 Americans a year—but diabetes isn’t as devastating a disabler. Unfortunately, there is no equivalent to insulin in helping brain-trauma victims to function. Brain trauma robs us of $7.6 billion annually: $2.9 billion are in direct costs, including treatment, rehabilitation, and care; $4.7 billion arise from indirect costs, including lost wages, taxes, and productivity. And the emotional price paid by the victims and their families, friends, and co—workers makes brain trauma one of the most tragic of all human afflictions. We can’t afford to keep ignor— ing it. Even if we or members of our families never suffer severe brain trauma, we all pay the bill. Young men between the ages of fifteen and twenty—four, those at highest risk for head injuries, are also those least likely to have insurance. As many as 40 million Ameri— cans have no health insurance, and in many of our most populous states, including New York and California, between 15 and 25 per- Policies and Priorities .155. cent of allrdrivers are uninsured as well. Although all of us are vul— nerable, a study conducted in San Diego in 1986 found that people with household incomes under $15,000 were half again as likely to suffer serious brain injuries as people making more. Poverty and the stresses that it imposes seem to put people at risk for falls, vio- lence, and traffic accidents. When the poor and uninsured have brain injuries, we end up sharing their medical bills through state and federal taxes. Yet traumatic brain injury seldom comes to mind when we list major public health problems. We all know about cancer and cardiovascular disease. Not only are they so common that almost everyone has known someone who has suffered from them; these afflictions usually hit in middle and late life, striking many of their victims at the height of their prosperity and power, when they have the means to focus public attention on whatever threatens them. Like AIDS, traumatic brain injury disproportionately hits the young and those in their prime. In 1995, AIDS took 35,607 Ameri- can lives—a terrible toll, but only half the number who died that year from brain trauma. Yet, thanks to effective advocacy, we are far more aware of AIDS than we are of severe head injury. Billboards, public service announcements, television programs, and newspaper and magazine stories have informed the American public of the threat posed by AIDS and of ways to reduce their vulnerability to infection. One reason for the failure to give traumatic brain injury the at— tention it deserves is that we seldom identify it as a single entity. Instead, we tend to look at the separate causes: car, truck, and motorcycle accidents; falls, violence, and sports injuries. We don’t look at the unifying calamity that constitutes their most serious re— sult. Paradoxically, as with statistics on cancer, heart disease, and stroke, the numbers of victims are large enough to surprise and even shock us, yet so large that we have trouble comprehending Politic: and Prioritie: 0156- them. They become abstractions and are therefore easy to disregard. As recounted in the newspapers, the individual cases are dramatic; they move us to sympathy, but only with a single victim and his or her family at a time. As Joseph Stalin is said to have observed, “One man’s death is a tragedy; a hundred thousand deaths is a statistic.” Statistics are general and abstracr; case studies are singular and concrete. Neither capture the magnitude of the suffering of thou— sands of individuals and families; nor can they convey the successes and failures, triumphs and frustrations, and sheer number of hours of painstaking effort on the part of physicians, neuroscientists, and physical, behavioral, speech, and occupational therapists. It is difficult for anyone to truly comprehend the searing impact of traumatic brain injury. Sometimes detailed narratives can come close to communicating its complexity, urgency, and propensity for causing human devastation—I think of A. R. Luria’s compel— ling T/ye Man wit/9 a Shattered “Vorld, a book about one of Luria’s patients. But we must often resort to art, symbolic representation, or metaphor to approach full understanding of a brain—trauma vic- tim’s individual experience. And even that lived experience, as con— veyed to us, is bound to be only partial, because by its very nature, traumatic brain injury steals the memories, thoughts, and fantasies that accompany the trauma and its aftermath. Still, we work with what we have and use it for our specific pur— poses. Epidemiologists seek to get an accurate quantitative picture of the incidence and prevalence of a defined phenomenon. Journal- ists want to tell a gripping, relevant story. Advocacy groups strive to raise awareness and generate support for their cause. Policy makers must decide which social problems should be addressed with legis— lation, regulation, and funding and must determine the order in which they should be tackled. In general, Americans have been slow to identify injury as a pub— lic health issue. Not until 1992 did the Centers for Disease Con— Polz'eie: and Prioritier '157' trol and Prevention, responding to pressure from policy makers, establish the Center for Injury Prevention and Control. In 1989, Dorothy P. Rice, former director of the National Center for Health Statistics, and Ellen MacKenzie, assistant director of the Health Services Research and Development Center at Johns Hopkins Uni— versity, reported to Congress that in 1985 injuries of all types cost the country $158 billion. They also found that vehicular accidents, the biggest cause of brain trauma, were also the single greatest cause of the most expensive injuries; car, truck, and motorcycle mishaps accounted for 9 percent of all injuries but for 31 percent of the resulting costs over a lifetime. Falls, the second largest cause of traumatic brain injury, came in second in injury—related expense, accounting for 24 percent of lifetime expenditures. Firearms, still another major brain-trauma culprit, placed third in cost. The bru— tal fact is that brain damage is not only devastating in itself; it is also devastatingly expensive to treat and to live with. R E S E A R C H Our reluctance to confront traumatic brain injury as a health crisis exhibits itself clearly in the disparity in research funding. Both the National Cancer Institute and the National Institute of Neurologi— cal Disorders and Stroke (NINDS) are part of the National Institutes of Health (NIH), the agency that acts as a conduit for the federal money invested in research. While each NIH institute does under- take some limited inquiries into the diseases or disabilities that it was founded to address, its primary function isn’t to conduct its own research but to support studies conducted by others, pri— marily researchers at health sciences universities. Leaving aside the millions of dollars that drug companies put into product develop— ment and testing, the NIH controls an overwhelming proportion of the money invested in examining the mysteries of how the human body functions and What can be done to promote health and com- Policie: and Prioritiex ' 158 ' bat disease and disability. By comparison, even the highest-profile nonprofit foundations contribute only a small fraction. For ex— ample, in 1993 the American Cancer Society (whose primary mis— sion is education) awarded less than $4 million in research grants; that same year, the National Cancer Institute spent over $2 bil- lion—more than 425 times that amount. With that kind of financial clout, the NIH sets the country’s research priorities. As a public entity responsive to an elected Con- gress, it also roughly reflects how important our society considers each affliction. Each year, cancer kills seven to ten times the num- ber of Americans killed by traumatic brain injury. We invest $2 bil— lion annually in cancer research; by a strict proportional standard, we should be investing between $200 million and $285 million in research related to traumatic brain injury. Instead, the NINDS spent a little over a tenth of that—just $29,235,000—researching head injury and related trauma in 1993 and roughly the same amount in 1994. And that modest figure represents what the country is devoting to brain—trauma research during what is intended to be a con— certed effort to expand basic and clinical knowledge of the body’s most complex organ. In 1989, President George Bush signed Pub— lic Law 101—58 declaring the 19905 the Decade of the Brain and funneling additional funds to the NINDS. The institute asked for a total of $901 million to fund the first year of the Decade of the Brain. The institute’s wish list covered fifteen areas of inquiry. In terms of amount of funding requested, the top three areas were cerebral palsy and other developmental disorders ($113.5 million), stroke and cerebrovascular disease ($91.2 million), and nerve and muscle disorders ($77.2 million). Traumatic brain injury came in tenth ($55.1 million), after epilepsy, multiple sclerosis, inherited disorders, and spinal cord injuries. And by the time the congres— sional budget paring was over, even this modest allocation had been Policies and Prioritier - slashed by almost half— despite the fact that traumatic brain injury kills and disables more Americans than do any of these disorders except stroke and cerebrovascular disease. By the end of 1994, the National Institute of Neurological Dis— orders and Stroke had established three comprehensive brain-injury research centers and eight centers to test promising treatments. By the close of the decade, it hopes to have a network of fifteen clini— cal centers dedicated to traumatic brain injury and to spend $78.2 million per year on related research. But in order to reach that goal, it will have to overcome our reluctance to confront the reality of the brain—trauma epidemic, our denial of our own vulnerability to brain injury, and our resistance to spending public money on any— thing for which we can’t see a potential personal benefit. Before new knowledge gained from basic research can be used to help brain—trauma victims, the therapies that it makes possible must undergo rigorous clinical trials. Each such study typically costs about $5 million altogether; spread over five years, that amount funds about twenty grants. In cancer, some innovative treatments are in their third or fourth round of clinical trials. In traumatic brain injury, many promising treatments discussed in Chapter 3, such as hypothermia, haven’t completed their first—not because of a lack of science but because of a lack of funding. Some of these would offer enormous benefits if they were proved to be safe and effective for a broad range of patients. RETHINKING REHABILITATION In focusing more attention on traumatic brain injury, we do need to increase our investment in basic and clinical research, at least bringing it into line with what we spend on investigating con- ditions that afflict far fewer people. But as we raise the level of funding, we also need to be careful not to merely perpetuate the crisis thinking that has hampered our ability to effectively confront Policies and Priorities ' I60 ' brain injury. Biomedical research appeals to our infatuation with heroic solutions—rescue for an individual patient, cure for a dis- ease. After all, Americans respond well to emergencies, a predispo- sition that partly explains our impressive advances in trauma care. Now neuroscience is extending further, probing ways to repair and replace damaged brain tissue. But this is still a medical approach based on a medical model. It seduces us into looking at a battered brain as we might look at a broken leg or a severed spine, mis- takenly assuming that once the physical damage is healed, function can resume—that if only we could figure out how to repair the wound, we would solve the problem. But the brain has more than a physical dimension. It has cogni— tive, emotional, social, aesthetic, and (one can argue) spiritual di- mensions as well. Once a broken leg heals properly and completely, a brief exercise regimen usually restores complete function. Neu— rologists appear to be on the brink of being able to mend spinal breaks that previously resulted in paralysis; the physical therapy that follows may be longer and more involved, but it still will be straightforward. Not so with traumatic brain injury. Regardless of future break— throughs in the medical treatment of brain trauma, it now seems, recovery will remain complicated and uncertain. We mustn’t de— lude ourselves into thinking that medical science will find every answer to this problem. No amount invested in basic and clinical investigations will re— lieve us of our ongoing collective responsibility. Traumatic brain injury is not like smallpox or polio—it is not a blight that we can defeat once and for all with a concerted and sustained medi— cal offensive. It will always be with us, either in its current state or as a reduced but looming threat. Confronting it effectively de— mands continuous effort and some fundamental changes, both in our individual attitudes and actions and in our culture as a whole. Policies and Priorities ‘ I61 ' We are already taking the first steps. Research is moving be— yond medical treatment and into rehabilitation, where it is sorely needed. For too long, rehabilitation following brain trauma has been a matter of trial and error, with no sound basis for determin— ing what worked and what didn’t—or why. The National Institute of Neurological Disorders and Stroke is funding some programs in neuropsychology aimed at discovering exactly how brain trauma disrupts learning, thinking, and behavior and providing solid sci— entific underpinnings for the development of new rehabilitation methods. But for the most part, despite recent interest in brain— injury rehabilitation, there is scant scientific evidence for the claims that rehabilitation institutions make about their treatments. For instance, researchers tend to agree that, in order to reroute neu- ral pathways around areas damaged by trauma, the healing brain needs stimulation. Thus a patient recently emerged from coma does best in a well—lighted room with people around and music playing. But whether music has some special effect beyond what a radio talk show might impart, and whether Vivaldi or the Rolling Stones might be a better choice, no one knows. What studies have been conducted to test the efficacy of vari— ous rehabilitation methods haven’t been nearly as rigorous as past trials of treatments for the acute stage of traumatic brain injury. One problem is that few rehabilitation institutions seem willing to submit their favorite therapies to the scrutiny of controlled trials. Furthermore, many of the publications about rehabilitation are sponsored by the rehabilitation institutions themselves; while the preliminary reports that the publications include may be interest— ing and even important, they can’t be considered definitive because they haven’t stood the test of unbiased examination and evaluation. Another problem with rehabilitation research is that measuring the results is much more difficult and complex than measuring the results of acute intervention. Each brain injury is unique, each vic— Polirier and Priorities ' 162 ' 73.; tim is unique, and each exists in a unique environment. At the initial rescue and acute stages, healing is a physical process; the underlying mechanisms are similar from one person to an0ther and therefore relatively amenable to objective valuation. The factors in- volved in recovery after that point, however, are much harder to pin down. Although experience has taught experts that motivation, persistence, and family support are important to a brain—trauma victim’s rehabilitation, ingredients like these don’t easily lend them— selves to quantification. But research is gradually moving onto this slippery terrain. The National Institute of Neurological Disorders and Stroke, for example, has funded a study comparing the re— coveries of children whose traumatic brain injuries resulted from falls and other accidents with those of children whose brains were damaged by abuse. The National Institute on Disability and Rehabilitation Research (NIDRR) appears to be well on its way to breakthroughs for the head—injured. Rather than being affiliated with the National In— stitutes of Health, NIDRR is part of the Department of Educa— tion, which gives it a perspective more appropriate to the difficult road faced by victims of traumatic brain injury and their fami— lies. It has designated two centers to conduct medical research into brain trauma. In addition, it has designated four model rehabilita— tion systems—the Santa Clara Valley Medical Center in San Jose, Wayne State University in Detroit, the Medical College of Virginia in Richmond, and The Institute for Rehabilitation and Research (TIRR) in Houston. Each of these has developed and is evaluat— ing a comprehensive program for delivering services to victims of traumatic brain injury, from the moment of the trauma through reintegration into society. The emphasis on education and the long term is important. “A head—trauma victim’s actual physical impairment may not change after a year and a half, when neurological healing plateaus,” explains Policies and Priorities '163‘ Don Lehmkuhl, a neurophysiologist and the director of the Re— habilitation Research and Training Center on Rehabilitation Inter— ventions Following Traumatic Brain Injury at TIRR. “But through education and by changing the environment, we can improve that person’s ability to function in the community.” In February 1994, NIDRR awarded TIRR an additional five—year grant of $650,000 per year to develop the center that Dr. Lehm— kuhl runs and to find valid and reliable ways of measuring each patient’s outcome. Until researchers have meaningful data that per— mit comparison, they won’t be able to investigate how well various rehabilitation methods work. Most existing outcome measures at— tempt to reflect the patient’s degree of impairment and disability, but TIRR is testing two scales for gauging the patient’s ability to perform specific social roles: the Craig Handicap Assessment and Reporting Technique (CHART) and the Community Integration Questionnaire (CIQ). The CHART has five subscales: physical inde- pendence, mobility, occupation, social integration, and economic self—sufficiency. The CIQ has three: home integration, social integra— tion, and productivity. The mark of successful rehabilitation isn’t whether the person with a brain injury has to use a wheelchair but how well that individual in a wheelchair can accomplish the tasks of daily living, perform in a job, and relate to others. Devising new therapies and testing existing ones is important, but we must not forget that for therapies to be truly effective, they must be available to those who need them. Although critics may question the efficacy of some techniques and most regimens have yet to withstand the rigor of scientific testing, there are others, such as the exercises involved in speech therapy, that rehabilitation professionals have shown do work. The problem is that access to such services usually depends on insurance and other financial re— sources as well as on where the patient lives rather than on his or her potential for benefiting from them. Extending the frontiers of Politic; and Priorities '164' rehabilitation research is a worthy endeavor, but it is of limited use unless we apply what we learn to everyone who needs help and not just to those lucky enough to be able to pay for it. Assuring that the brain—injured receive the rehabilitation they needmand only the rehabilitation they can benefit from—also en— tails seeing that providers of these services are properly trained and that the people in their care are neither neglected nor abused. The business of rehabilitation has mushroomed into a multi—billion— dollar industry free of regulation. To protect this vulnerable popu— lation, public agencies and private professional associations must establish standards for the training and competency of therapists and for the management of rehabilitation facilities. HELP WITH LIVING Beyond these moral and pragmatic challenges is one that is even tougher: no matter how much money and effort we put into it, no matter how fairly and rationally we distribute services, rehabilita— tion doesn’t always work. The rhetoric of rehabilitation continues to focus on recovery and improvement, but for many thousands of brain—injury survivors, recovery has in fact plateaued and sub- sequent improvement, if any, will be very small. What do we do with this large population of chronically disabled individuals who are never going to get much better? Who will provide the support services they need to function at even the level of basic survival? At present, Medicaid and Medicare fund minimal services, doing better in some states than in others. The primary burden falls to the families, most of whom become overwhelmed by the costs and daily challenges. Our society must come to terms with this issue. Just as our re— sponsibility doesn’t end when we’ve saved the life of a person with a serious brain injury, it doesn’t end when we’ve given that individual appropriate rehabilitation. Although universal access to these ser- Politie: and Priorities '165' #13- m... vices will maximize the percentage of brain—injured who regain independence and are able to support themselves, some won’t be so lucky. Providing the most seriously disabled with appropriate housing, food, supervision, transportation, social and psychologi- cal counseling, medical care, and the other necessities of life is society’s collective responsibility. Shifting this burden to the fami— lies only creates more victims and robs us of the other contributions that caretaking individuals would otherwise make. Besides, some people who suffer brain injuries don’t have families, and others’ families are unwilling or unable to take care of them. We should accept the burden, both because we have a moral obligation to help the needy and because traumatic brain injury could happen to any of us, causing us to require the same assistance ourselves. Since many progressive programs for helping brain—injured indi- viduals have come from the states, as a matter of policy the federal government should provide funding and broad guidelines but leave sufficient latitude for states to develop or institute innovative pro— grams for providing and regulating services. In this way, the federal government could focus chiefly on funding research, collecting data on the causes and incidence of brain trauma, establishing rigorous standards for the rehabilitation industry, and educating Americans about brain trauma. States that have yet to put programs in place could select the strategies that have worked well elsewhere and modify these to make them appropriate to their populations. If the legislatures fail to act on this issue, the media and, one hopes, in— formed voters can add their voices to those of brain-trauma interest groups and make sure every representative understands that pro— grams in place in other states are cost-effective ways of delivering essential services. It’s up to all of us to transform the silent epi— demic into one heard and responded to in the places where public policy is made. Even after appropriate rehabilitation, many survivors of trau— Polz'tie: and Priorities '166' matic brain injury need public help in order to maintain their highest possible level of function. If they aren’t capable of living by themselves, society should provide them with group housing or give their families financial assistance to defray the cost of their care and of necessary alterations to their homes, such as doorways that have to be widened or bathrooms altered to accommodate wheelchairs. Often, brain-injured individuals can live semi—independently in an appropriately modified environment if they are given regular help with chores and access to public transportation. They also may benefit from vocational training and job placement. Many recover normal levels of intelligence but have persistent problems with integrating knowledge; further encouraging employers to develop suitable positions—as the Americans with Disabilities Act does to some extent—may transform the brain—injured from lifelong de- pendents to contributing members of society. Giving brain-trauma victims and their families the services from which they can benefit not only is the right thing for a civilized society to do; it also makes economic sense. Why, then, have we taken so long to get around to it, and why are we still dragging our feet? CHANGING OUR ATTITUDES Before we can take effective collective action against the epidemic of brain trauma, we must deal with our ambivalence and discom— fort with brain injury and its victims. Severe brain trauma interferes with the very interpersonal and communication skills that human beings use to elicit understanding and caring from others. A per— son whose speech is halting and slurred evokes pity but not empa— thy. The sight of a previously normal adult reduced to the mental capacity of a young child and barely able to sit upright in a wheel— chair is so horrible to contemplate that we tend to turn away. We feel impotent in the face of the tragedy and confused about what Policies and Priorities '167' response would be appropriate. We also experience a desperate, albeit often unconscious, need to erect an emotional wall between us and the unfortunate individual, attempting to reassure ourselves that a similar fate couldn’t befall us—although, of course, it could. We even tend to disregard fatigue, judgment lapses, short—term memory deficits, and other effects of minor brain injury in family members and co-workers. Loss of mental capacity in ourselves and changes in the personalities of those close to us are two of the most nightmarish situations imaginable. No wonder we recoil from the brain—injured. As we do with AIDS, we often resort to blaming the victim, especially if the injury involved some element of voluntary risk )~ taking. That twelve-year-old girl shouldn’t have taken up horseback ‘ riding, or she should have worn a helmet. That seventeen-year—old boy shouldn’t have been driving eighty miles an hour, especially without fastening his seat belt. And as for the parents who for the rest of their lives will be caring for a disabled daughter or son, they should never have bought the horse or handed over the keys to the car. That middle—aged woman should have called a cab instead of J trying to driVe home after three drinks. That elderly man shouldn’t “3 WI have been living in a house with stairs. In September 1992, Jean Ann McLaughlin testified before the US. Senate in favor of Senator Ted Kennedy’s traumatic brain in— f} jury bill, which finally became law in 1996. In a voice rendered halting by lingering speech defects, she gave a poignant description 2 of living with the disabilities that plague hundreds of thousands of :32? people with brain injuries. McLaughlin had suffered her catastro— phe under circumstances well beyond her control; while operating her car at a normal speed, she had been hit head—on by a drunk driver. Yet, as she spoke, members of the audience fidgeted un— comfortably and averted their eyes. Another witness at the hearing, Clark Watts, a neurosurgeon and the director of the shock trauma Policies and Priorities ' 168 ' center at the University of Maryland Medical Center, explained to reporter Laurie Jones that this was a typical reaction. “Everyone gets uncomfortable— they don’t know where to look and they can’t wait to get out of there,” he said. “It’s not like having an eloquent Holly— wood wife who got infected with HIV through a transfusion ad— dress a national political convention. People don’t squirm at that.” Such self—protective reactions may help us turn the tragedies of others into cautionary tales that encourage us to practice safer be— havior, and they may give us the collective will to enact legislation and even change our culture in order to prevent traumatic brain injury. But they don’t relieve us of our obligation to help those who are already its victims. Despite the recent phenomenal expansion of rehabilitation facili— ties, only 5 percent of the victims of traumatic brain injury receive the rehabilitation services that they need to reach their maximum potential for recovery. Despite recent strides in brain research, severe traumatic brain injury remains a medical disaster, because recovery is usually lengthy, often incomplete, and always uncer— tain. Brain trauma is an economic crisis because care is expensive, rarely covered adequately by insurance, and uneven in its efficacy. Patients with substantial financial resources can obtain elaborate rehabilitation services, even if these do them little or no good, while patients of modest or straitened circumstances rarely receive enough rehabilitation, even if that care is likely to make the differ- ence between a lifetime of expensive public dependency and one of self-support or at least relative self—sufficiency. This makes no rational sense. It makes no medical sense. It makes no moral sense. On top of that, it is unfair. Unfortunately, it is all too typical of our nation’s health care system. One of the essential tenets of any civilized society is a com- mitment to assist and protect its neediest members. When a per— son suffers a serious head injury, that person needs our assistance Policies and Prioritier '169' and protection. Our moral sense tells us that acting together as a society, we must do whatever is reasonable to help. Our rational sense tells us that “help” in this sense entails doing what we believe offers the greatest promise for fulfilling that need in the long run. Because our resources are always finite and our collective obligation extends to so many individuals, we can—in fact we should—apply demanding standards of effectiveness and efficiency to the help we give; but we can’t abandon the needy. I have no delusions that our system can be made wholly rational and fair. But most people who stop to think about it believe that anyone in need of emergency life-saving care should get it. Emer— gency medical technicians don’t check a trauma or heart-attack victim’s wallet for proof of insurance before stabilizing that person and rushing him or her to the hospital. We agree that any human being in that predicament deserves a fair chance to survive and thrive. That is what we would want for ourselves under similar cir— cumstances. But when confronted with applying these precepts, we seem un— able to go beyond the first step. We tell our rescue and trauma teams to spare no effort and expense in saving the victim’s biologi— cal life. Then, once continued survival is likely, we disclaim further responsibility. We become distracted by irrelevant considerations, irrational fears, and lack of respect and concern for others. Because we don’t like to face our own mean—spiritedness and vulnerability, because we don’t want to admit our own bias and bigotry, we blame the victims of traumatic brain injury, devalue them as people, and argue that we don’t have the resources to help them. We make de- cisions that make no sense, even from a purely economic point of view. We permit and support the system that I described in Chap— ter 8, the system that denies the severely brain—injured but alert street artist Donny Michaels the rehabilitation services that might Policies and Priorities ' 170 ' enable him to become self-supporting, yet lavishes futile and costly treatment on Then Nguyen, who is in a persistent vegetative state due to an accident that involved a well-insured oil company. HOW WE CAN PAY FOR PROGRESS A rational, coordinated, morally responsible approach to traumatic brain injury would benefit us all, indirectly if not directly. We need to inform ourselves and our families, friends, and co—workers. We must press our political representatives and other policy makers to give brain trauma the attention it deserves. We must recognize that money spent wisely on stemming the brain-trauma epidemic is money well invested. Of course, we have to hold treatment, therapy, service, and research programs to high standards of appropriateness and cost—effectiveness, but this is not an area where we can afford to scrimp. Because in one way or another we all bear the cost of every victim’s brain trauma, main- taining the current parsimonious level of funding is shortsighted in the extreme. We neglected society’s best interests when we allowed Congress to retreat from expanding Medicare to include insurance for cata— strophic care for the elderly. That program would have covered treatment for traumatic brain injury, as well as other lengthy af— flictions, in Americans sixty-five years of age and older. Although federal legislation for such coverage passed in 1988, it was revoked the following year after a coalition of interest groups, led by the American Association of Retired Persons, suddenly realized that the program would require each person eligible for Medicare to pay a surtax for catastrophic coverage, with the better—off segment paying proportionally more. The idea behind the legislation was popular—but only if no one had to pay for its fruition. Catastrophic health insurance was a good idea. Its reversal was a Policies and Priorities 0 o prime example of both collective and individual shortsightedness. Instead of killing the legislation, Congress should have extended it to cover all Americans, not just Medicare recipients. This progressive legislation was killed by a paradox: few people can afford catastrophic health care. Even three or four months of treatment for cancer or a serious heart defea can easily deplete substantial savings or exceed the lifetime-benefit limit of the stan— dard insurance policy. Yet the chance of any one of us developing a brain tumor or needing a triple bypass is relatively low, and people are reluctant to support programs that are unlikely to benefit them personally. Persuading them to do so requires strong, committed leadership, and that’s in short supply. Most contemporary poli— ticians are more comfortable following polls and adjusting their votes accordingly than presenting strong arguments for meritori— ous programs that lack superficial appeal. The debate about more sweeping health care reform and univer— sal access that occupied the first two years of the Clinton admin— istration swept aside separate discussion about catastrophic care. But now that this more ambitious agenda has been shelved, we should resurrect the earlier subject, this time directing more effort toward presenting the compelling arguments for universal cata- strophic health insurance. Precisely because it’s unlikely that any given individual will suf— fer a long, expensive affliction, insurance premiums for catastrophic care policies can be set at aflcordable rates. Like any form of insur— ance, it’s a gamble, but it can prevent a medical catastrophe from becoming an economic catastrophe or worse. If every victim of traumatic brain injury had good catastrophic health coverage, every victim would be able to afford the rehabilita— tion necessary to reach his or her highest possible level of function— ing. The chief barrier to access would be geographic. People living in big cities would have a range of programs near their homes, all Policies and Priorities I a competing to offer the most effective rehabilitation services. Vic— tims in small towns and rural communities might have to seek care located hours away from their families. But at least everyone with severe brain trauma would be able to find help somewhere. We could pay for universal catastrophic health care insurance by collecting the modest premiums along with federal income taxes, as we do with mandatory contributions to Social Security. After that, we would still need to figure out a way to fund research into prom— ising medical and rehabilitation therapies. And we would need to do the same to cover the cost of statewide coordinating agencies to regulate, oversee, and support the rehabilitation industry and to di— rect the brain—injured and their families to the appropriate services. And beyond that, to be both just and rational, we would need to come up with the money to provide appropriate transportation, social and occupational services, and living arrangements for brain— injured individuals who, despite the best rehabilitative care, make only partial recoveries. One fair strategy for generating the money to deal with these expenses is for federal and state governments to tax those activities that are the biggest contributors to brain trauma. Since vehicles are the number—one culprit, an extra dollar or two added to driver’s license and registration fees and earmarked for brain-trauma reha- bilitation would be appropriate. So would a few cents more per gallon at the gas pump. Licenses for drivers under twenty—five, who cause a disproportionate number of accidents, could carry an addi— tional surcharge. Until we enact a universal, national catastrophic— care plan, states could cover the costs of more than half of these in— juries by requiring motorists to carry automobile insurance policies that include acute, rehabilitative, and long—term care for traumatic brain injury. The states could also establish reserves to extend these benefits to people hurt by drivers who, despite the law, were unin— sured. Because the likelihood is slight that any individual driver or Policies and Priorities '173' passenger will suffer serious brain trauma in an accident, the addi- tional premium shouldn’t amount to more than 10 percent of the cost of a policy without this protection. In 1991, Texas set up a trust fund for victims of brain and spinal cord injuries. Administered by the Texas Rehabilitation Commis— sion, the money comes from a twenty—five—dollar surcharge on fines for driving under the influence and a five—dollar surcharge on other moving violations. Florida operates a similar fund, paying for it with 8.2 percent of all civil penalties collected by the county courts. Because alcohol consumption increases the likelihood of both vehicular accidents and falls, the second most frequent cause of brain injuries, raising the tax on beer, wine, and liquor would be fair and appropriate; some of that money could also go to repair— ing the nontraumatic forms of brain damage caused by alcohol. Assaults rank third as a cause. Because assaults, including assaults with firearms, make up the third biggest cause of brain trauma, governments should impose fees on guns and ammunition and ear— mark the monies for treatment of brain trauma. Part of the price of every ticket sold to a boxing match should go toward correcting the devastation caused by this sport. Think what our society could do with the proceeds from a 5 or 10 percent tax on all such risky activities. It would give our country billions of dollars a year to spend on not only prevention campaigns but also rehabilitation, research, housing, and job training for the brain-injured. In 1993, the most recent year for which statistics are available, the Bureau of Alcohol, Tobacco, and Firearms collected $7.7 billion in excise taxes on alcoholic beverages produced in the United States. Imagine what we could accomplish by doubling that tax alone. Spending just a quarter of the difference on helping vic— tims of traumatic brain injury would generate a fund of $1.9 billion per year. If the added expense occasioned by these taxes prompts people Policies and Priorities . 174 . to drink less, drive fewer miles, or buy fewer guns, so much the better. Any reduction in high-risk activities means a drop in the number of associated traumatic brain injuries. We have to do more than pay the cost. We have to retool our culture. We need to nurture rather than deny our impulses toward empathy, compassion, and fairness and restore these virtues as cen— tral values in our society. The most effective, most rational way to halt the epidemic of traumatic brain injury is to dramatically reduce the number of brains that are damaged in the first place. That can be done. We could probably cut the incidence of severe brain trauma in half. Granted, we would have to agree to some tough trade—offs. And we would have to rethink our priorities. But if doing so would save thirty-five thousand to fifty thousand lives and prevent close to the same number of serious disabilities every year, wouldn’t that be worth it? Policies and Priorities ‘ 175 ' ...
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