Concussion advocacy and legislation: a neurological surgeon's view from the epicenter.

CONCUSSION PREVENTION EFFORTS CONCUSSION PREVENTION EFFORTS

Concussion Advocacy and Legislation: A Neurological Surgeon’s View From the Epicenter Richard G. Ellenbogen, MD Department of Neurological Surgery, University of Washington, Harborview Medical Center, Seattle, Washington Correspondence: Richard G. Ellenbogen, MD, FACS, FAAN, Department of Neurological Surgery, University of Washington, Seattle, Washington, Harborview Medical Center, 325 9th Ave., Box 359766, Seattle, WA 98104. E-mail: [email protected] Received, March 7, 2014. Accepted, June 2, 2014. Copyright © 2014 by the Congress of Neurological Surgeons.

Traumatic brain injury is the leading cause of death and disability in the world for adolescents according to the World Health Organization. Sports-related concussion is a small but perhaps one of the most preventable causes of that morbidity. Legislation to protect student athletes is one of the ways in which we can advocate for safety in sports. This paper reviews the legislative history of the first concussion law passed to protect youth athletes: Washington State’s Zackery Lystedt Law. This history is viewed from the point of view of one of the participants in the efforts to pass laws in all 50 states. The key provisions of the Zackery Lystedt Law include (1) education for parents, athletes, and coaches; (2) immediate removal from play during a game or practice, after a suspected concussion with no return to play until (3); (3) written clearance by a concussion expert for return to play; and (4) uniformity of rules for all schools who use public land. Last, the nature of this legislative process, which included attorneys, legislators, and physicians, demonstrated that effective collaboration of local, state, and national leaders can address a critical public health challenge such as concussion affecting student athletes. KEY WORDS: Sports Concussion, Concussion Education, Return to Play, Health Legislation, Lystedt Law, Concussion Prevention, NFL Head Neck and Spine Committee Neurosurgery 75:S122–S130, 2014

DOI: 10.1227/NEU.0000000000000495

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ashington State became the epicenter of concussion legislation in the United States in 2009. The compelling story revolves around a remarkable young man named Zackery Lystedt who suffered a terrible tragedy in 2006 while playing the sport he loved, football. He was saved by emergency craniotomies and continues to lead a meaningful life, albeit one that includes permanent neurological disability. He was blessed with loving, strong, and supportive parents, as well as passionate advocates who believe that there should be no more Zackery Lystedt narratives. ABBREVIATIONS: ACSM, American College of Sports Medicine; AMSSM, American Medical Society for Sports Medicine; AOSSM, American Orthopaedic Society for Sports Medicine; BIA-WA, Brain Injury Association of Washington; CDC, Centers for Disease Control and Prevention; CSG, Coalition of State Governments; NFL, National Football League; TBI, traumatic brain injury Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.neurosurgery-online.com).

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The story is told as objectively as possible, but it is told in narrative style as a result of the following disclaimer. The major disclaimer for this paper is that the names of all the organizations, legislators, attorneys and physicians that contributed to the success of this legislation in each state is too expansive to list, but in no way diminishes their immense individual and collective contributions. Although I was involved with both the Washington State team that passed the Lystedt legislation and the National Football League (NFL) team, which is referenced in the paper, it is told from that unique perspective. This is in no way intended to devalue the essential contributions of all the other organizations and individuals who were instrumental in concussion legislation. This paper discusses the events that led to the first law in the United States written to protect student athletes against preventable brain injury. I will try to place these laws in the context of the evolving concussion medical model in the United States. For the neurological surgeon, a tragic traumatic brain injury (TBI) story is all too commonplace. The management of TBI consumes


Copyright © Congress of Neurological Surgeons. Unauthorized reproduction of this article is prohibited.

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a significant portion of a neurological surgeon’s life, starting with residency training and continuing into practice. The neurological surgeon’s commitment to treating TBI is implicit, providing a safe haven for all patients regardless of the severity of the injury or the time of day or night that they arrive in the emergency department. According to a January 2006 survey by the American Association of Neurological Surgeons, more than 93% of neurosurgeons participate in their hospital’s call schedule for emergency care and more than 55% take call 2 or 3 times per week.1 However, mild TBI such as concussion remains mostly a nonoperative, emergency department or outpatient portion of a neurosurgeon’s practice. Fortunately, for patients in 2014, there has been an evolution away from the hospital-based emergency care model. No one specialty “owns” the mild end of the TBI spectrum. Thus, physicians and health care professionals from all backgrounds are currently actively participating in concussion management. The Certificate of Added Qualifications in Sports Medicine has exponentially expanded the expertise available to the patient with a concussion. The curriculum in Sports Medicine covers a broad range of subjects and includes the role of the team physician, basic science of sports, prevention, emergency assessment, diagnosis and treatment, rehabilitation, and invasive procedures. Specialties such as Emergency Medicine, Family Practice, Neurology, Internal Medicine, Physical Medicine and Rehabilitation, Pediatrics, Orthopedic Surgery and Sports Medicine, Psychology, and Psychiatry have all been active participants in the care of athletes with a concussion, in the outpatient setting and/or on the playing fields. The long-standing active involvement by athletic trainers, registered nurses, physician assistants, nurse practitioners, physical therapists, and other health care professionals has also improved the quality and breadth of concussion care management. The importance of these aforementioned observations is not simply to multiply the expertise of professionals available to the patients but also to increase the number of advocates who are now campaigning for player safety and health from the playing field to the legislative battleground. The specialty of Sports Medicine has emerged as an active and skilled partner in this fight for the TBI patient. The American College of Sports Medicine (ACSM) was founded in 1954. The ACSM is the largest and arguably the most prominent sports medicine and exercise science organization in the world and is inclusive in its membership. The ACSM claims more than 45 000 international, national, and regional chapter members and includes clinicians, scientists, health and sports fitness professionals, students, and a broad international membership. From a neurological surgeon’s perspective, the ACSM meetings are impressive in both their breadth of subject matter and variety of participants. The American Orthopaedic Society for Sports Medicine (AOSSM) is also a world leader in sports medicine education, research, and training. The AOSSM, founded in 1972, is an

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international organization of orthopedic surgeons and other allied health professionals primarily dedicated to elevating the field of sports medicine. Almost every professional and collegiate athletic team in the United States seeks to be associated with a team physician who is a member of the AOSSM. The American Medical Society for Sports Medicine (AMSSM) was founded in 1991. The AMSSM is a multidisciplinary organization of physicians whose members are dedicated to education, research, advocacy, and the care of athletes of all ages. It now comprises more than 2500 sports medicine Physicians. The majority of the AMSSM members are primary care trained with a Certificate of Added Qualifications in Sports Medicine, and their goal is to provide a link between the rapidly expanding body of literature related to sports medicine and its application to their patients in a clinical setting. The National Athletic Trainers Association was founded in 1950 and boasts a mission to enhance the quality of health care provided by certified athletic trainers and to advance the athletic training profession. In practical terms, the athletic trainers have been on the “front lines” for decades. They are part of the fabric of health care professionals who have improved the safety for all athletes by focusing on sports injury and illness as well as prevention, diagnosis, and treatment. They have been indispensable partners in advocating for TBI prevention at all levels: youth, college, and professional. The only drawback has been that there are currently not enough of these valuable professionals available to all student athletes. The “Perfect Storm” of events from blast injuries during wars in Iraq and Afghanistan to injuries of professional athletes and young students, such as Zackery, has focused the media spotlight on concussion. The military conflicts have unfortunately produced a significant population of soldiers returning from the battlefield with either TBI or posttraumatic stress disorder after TBI. And, the evolving peer-reviewed literature on chronic traumatic encephalopathy and potential for long-term consequences of sports- and war-related TBI has added to our zeal and need for prevention, treatment, and safety. However, successful concussion legislation in the USA during the 21st century revolves around the tragic but inspiring story of Zackery Lystedt. On October 12, 2006, Zackery Lystedt sustained a severe TBI, which included acute bilateral subdural hematoma during a middle school football game. Zack was an outstanding student athlete in a town just south of Seattle, Washington. He was excellent at many sports, but he loved football and excelled at it. Zack played fullback on offense and linebacker on defense. On a critical play in the game, the opposing ball carrier sprinted toward the end zone only to be caught by a leaping and diving Zack Lystedt who ran diagonally across the field to tackle him. Zack’s body, while airborne turned to the supine position causing the young student athlete to land on the back of his helmet. He moved all limbs initially slowly but painfully but did not appear to lose consciousness. Zack was required only to sit out 1 play according to the prevailing rules in 2006 and did so because the referee called a time

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out. There was no loss of consciousness, and he walked off the field under his own power and stood next to the coach. He stayed out 2 more plays until halftime. There were no health care professionals on the sidelines. He played offense and defense most of the third and fourth quarters. His teammates noted that he was not himself, in the sense that his behavior was different, and it included an element of confusion. He played well for the rest of the game scoring the go-ahead touchdown and causing a fumble while playing defense. At the conclusion of the game after the customary congratulatory high fives, he began walking off the field with his father. He turned to his father and in a panicked voice that turned to screams, said he could not see; he had a horrific headache. He collapsed on the field and was in extremis before being airlifted to Harborview Medical Center/UWMedicine, the only Level I Trauma Center in a 5-state region in the Northwest. He underwent sequential craniotomies by a team led by Professor Randall Chesnut, University of Washington Department of Neurological Surgery. It was strongly stated later by many external medical experts that had Zackery been removed from the game after his first obvious concussion and subsequent neurological changes, he would have likely not have experienced the catastrophic medical deterioration later that day. Zack’s individual football-related tragedy will be lost as an isolated event, if it is not viewed in the greater context of this worldwide public health challenge. The World Health Organization predicts that by 2020 TBI will be the third leading cause of death and disability in all populations.2 Currently, TBI is the number 1 cause of death and morbidity in adolescents worldwide.3 Although sports concussion is only a small fraction of that statistic, it is the one with perhaps the most media focus and arguably the most preventable. Often athletes with a concussion do not come to the attention of an emergency department physician or neurological surgeon unless it is after hours or the injury causes progressive symptoms. The athletes are often treated by their local primary care physicians or sports medicine personnel or receive no medical care at all. In fact, the Centers for Disease Control and Prevention (CDC) estimate that children make approximately 473 947 emergency department visits for TBI for ages 0 to 14 years.4 Approximately 75% of TBIs that occur each year are mild TBI or concussions. Each year, emergency departments treat more than 173 285 sports- and recreation-related TBI among the 0 to 19 years of age population.5 The number of patients who do not come to the emergency department is difficult to estimate but is likely significantly higher. The CDC estimates that there may be as many as 3.8 million sports and recreational head injuries annually.6 Although the brain may be nondiscriminating about the source of an insult that causes a concussion, it is argued that a large number of sports and recreational concussions are preventable injuries. The concept that concussions were a subset of TBI that should be treated with seriousness was not novel in 2006, the year of Zack’s injury. The CDC has had a moderately successful educational program called “Heads Up: Concussion in Youth


Sports.” The CDC supplies a box filled with free concussion tools that include educational posters on how to diagnose concussion, fact sheets, clip boards, videos, and DVDs. These tools are free to parents, students/athletes, and coaches. The Web site has a wide range of educational tools and is updated with impressive frequency (http://www.cdc.gov/concussion/sports/resources.html). The CDC has been a pioneer in the effective use of all media and educational material (Web based to written) for this major public health issue. Similarly, the Canadian effort in concussion education is equivalently impressive and is called ThinkFirst (Pensez d’Abord). The Canadian online site for provincial, coach, parent, and student education can be found at http://concussioneducation.ca. Neurological surgeons, such as Professor Charles Tator of Toronto, the founder of ThinkFirst Canada, have been dynamically communicating the message of TBI prevention to all Canadians since 1992. US ThinkFirst efforts have been active since 1986, the year the program was cofounded by the American Association of Neurological Surgeons and Congress of Neurological Surgeons. Zackery Lystedt was fortunate in the sense that the EMS system worked well, and he was brought emergently to the operating room within the “golden hours” after his injury. After he underwent sequential bilateral decompressive craniotomies, he was in a coma for about 1 month. He could not move any limb or even blink for about 9 months. Zackery and his parents worked tirelessly through a grueling rehabilitative process, which is still ongoing. It is unlikely he will return to his premorbid state. Although his speech is halting, and he can only walk a short distance with a cane, he has remained positive, humorous, full of vigor, and downright inspirational to all who are fortunate enough to meet this engaging young man. One meeting with him will result in a deep abiding respect for his perseverance, charm, and indomitable spirit. He has graduated high school but remains dependent on his parents for most activities of daily living and transportation. His parents have been clear that although they understand and appreciate the well-intentioned notoriety that he has achieved, they would give anything to have the premorbid Zackery back (personal oral communication, October 2010). How did the on-field event that fateful day in 2006 change the lives of not only the Lystedt family but also those around them? This event moved the national debate on concussion from purely educational to intensely legislative by a team of advocates. Why had our formidable education attempts by the CDC, ThinkFirst, famous athletes, and the media not worked? One of the United States’ key advocates for youth concussion legislation is Richard H. Adler, JD, an attorney from Seattle, who has been a compassionate, tenacious, and thoughtful leader in this laudable effort. Mr Adler served as President of the Brain Injury Association of Washington State (BIA-WA) for 8 years and currently serves as Chairman of its Executive Board. During his tenure, he was deeply moved by the devastation he saw among the people whom he helped. His mission became to prevent a future “Zackery,” and the Lystedt family requested the same. He was convinced that many sports-related tragedies could be




averted or mitigated if the CDC concussion guidelines were used in a timely manner.5 Respected spokespersons, from celebrated professional athletes to physicians, spoke eloquently and often advocating a cautious, sound approach to resting athletes who sustain a concussion. The mantra repeated often was “When in doubt, sit them out.” One of the many articulate spokesmen for the Lystedt family was a team physician for the Seattle Seahawks and Mariners, Professor Stanley A. Herring, MD/UW Medicine. He had been preaching the safety message for decades to his fellow physicians, patients, and athletes. However, the intensive educational efforts were simply not successful for a variety of reasons, so more had to be done. The educational approach, although robust, had major gaps. Educational efforts initially failed because there is what Mr Adler called the “inconsistency gap.” There are perhaps more than 300 million youths worldwide who participate in athletics (personal oral communication, November 2012, Prof. Jiri Dvorak, Fédération Internationale de Football Association [FIFA] Medical Director). There are more than 35 million kids 5 to 18 years of age in the United States alone who participate in organized sports. Coaches, school districts, parents, and health care experts all had different interpretations of the diagnosis, management, and even magnitude of the concussion problem that we were facing. There was a wide range of reasons for the inconsistency, from denial to rugged individualistic approaches. Further, there was a shortage of Level I and II scientific evidence arguing for a more cautious approach, inconsistent application of the suggested CDC suggested guidelines, and varying levels of support from the leaders supervising the students. Next, there was the “stickiness problem,” as Mr Adler so aptly named it. There was no countywide or statewide adoption of best practices once identified by a specific sport or coach. The result was a piecemeal patchwork of practices and policies that were neither coherent nor consistent. At the end, education alone could not change the well-meaning but often ineffective action by those supervising student athletes. The collection of youth sports throughout the United States and the world is enormous, diverse, and far from centralized. It often varies wildly between sexes and within a single sport at different levels. There are the “haves” and “have nots” in terms of equipment, coaching, parental supervision, and medical expertise. In many countries, there are no “sports medicine” physicians or precious few health care professionals available to support youth athletes. In rural or small town United States, a physician with expertise in concussion may be a county away from the playing field. Most coaches are simply well-intentioned, dedicated volunteers who have little training in medical issues and must balance their family and occupation with the demands of mentoring a wide spectrum of youths. It was ultimately decided that there needed to be a clearly articulated, consistent approach and written policy to change behavior to protect the youths of Washington State against preventable sports-related TBI.6

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Last, there is a fundamental principle in sports that seems to work and that is Rules. When FIFA outlawed elbowing in the head by an opposing player while heading the soccer ball, the concussion rate dropped in the game. NFL Commissioner Goodell during his tenure has been a huge promoter of strict adherence to rules to improve safety. When the NFL started to fine players for intentional head-to-head contact that became a huge disincentive for players to tackle with their helmet, and that activity began to disappear. When the NFL moved the restraining line up 5 yards in the kickoff, the concussion rate dropped 40% on that one play. The combination of the stickiness problem, inconsistency gap problem, and the success of rules led to the conclusion that a law will be more effective than anything else attempted. The legislative route was chosen. Mr Adler and his team of legislative warriors, using the story and spirit of Zackery Lystedt and his parents, would enlist physicians to include Dr Herring and myself, insurers, politicians, journalists, health care organizations, government agencies, professional sport teams, interscholastic athletic leaders, youth sports organizations, and a lobbyist. The next step was employing a lobbyist and influencing legislators. Knowledge of the legislative process is essential and to dive into this process without assistance is naive and prone to failure. The BIAWA Board employed an experienced lobbyist, Lisa Thatcher, to guide them through the next steps. The next strategically essential piece was identifying a legislative advocate. Jay Rodne, Washington State House of Representatives (Republican, 5th District, North Bend), was moved by the Lystedt tragedy and this engaging family. He was the representative in the Lystedt’s home district. Representative Rodne made passing a youth concussion bill his top priority. He applied his legislative savvy and moral authority to the sponsorship of a new bill to protect student athletes. The law sponsored by Representative Jay Rodne was bolstered by support from organizations including the BIA-WA, the Lystedt’s family, Seattle Seahawks, Washington Interscholastic Activities, Washington State Soccer Association, Washington State Athletic Trainers Association, Cannfield and Associates Risk Managers, Harborview Medical Center/UW Medicine, University of Washington, and Seattle Children’s Hospital. Beyond the moral imperative, each of these organizations had both obvious and subtle motivations for supporting this law. Each played a unique role in ensuring that the law was passed. For example, Cannfield and Associates Risk Managers wanted to set the stage to reduce costly litigation from preventable brain injury tragedies on school fields. The Washington Interscholastic Activities, who provided the administrative infrastructure and rules for participation in Washington State school sports, desired uniformity in the concussion management approach so that the playing fields remained a safe haven for student athletes. This powerful coalition of politically committed organizations, generous individuals, lobbyist, and patient advocates, led by Mr Adler, carefully crafted and wordsmithed a law that later was aptly named the Zackery Lystedt Law. This law passed unanimously in both the Washington State House of



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FIGURE 1. Governor Christine Gregoire signs the Zackery Lystedt Law in 2009 with Zackery (kneeling) surrounded by his parents Mercedes and Victor to the right and Richard Adler (far right) and bill sponsor Jay Rodne (far left).

Representatives and Senate as Engrossed House Bill 1824. It was signed into law by then Governor Christine Gregoire, another passionate advocate, on May 14, 2009 (Figure 1). The Zackery Lystedt Law became an inspiration not only for Washington State and its citizens, but also as importantly, it served as a model for youth sports concussion laws for all other states that had yet to enact such legislation. This law was both impressive in its scope and ingenious in the political realities that it communicated. The 5 key provisions of this law are as follows: 1. Youth athletes who are suspected of sustaining a concussion or head injury be removed from play. “When in doubt, sit them out.” REMOVAL FROM PLAY 2. School districts work with the Washington Interscholastic Activities to develop information and policies on educating coaches, youth athletes, and parents about the nature and risk of concussion, including the dangers of prematurely returning to practice or competition after a concussion or head injury. UNIFORMITY OF RULES AND IMPLEMENTATION 3. All student athletes and their parents/guardians sign an information sheet about concussion and head injury before the youth athlete’s initiating practice at the start of each season. INFORMATION AND EDUCATION 4. Youth athletes who have been removed from play receive written medical clearance before returning to play from a licensed health care provider trained in the evaluation and management of concussion. WRITTEN CLEARANCE BY AN EXPERT TO RETURN TO PLAY 5. Private, nonprofit youth sports associations wanting to use publicly owned playfields comply with this law. PRIVATE SPORTS ORGANIZATIONS COMPLYING WITH THE SAME RULES AS PUBLIC SCHOOLS


The law was written (with the help of Mr Adler) and reviewed by the key stakeholder organizations so that it could be passed without opposition. It was voted into law unanimously, not a common event in the Washington State legislature. The law avoided specifying the physician as the sole expert capable of clearing a youth athlete to return to play. The term “licensed health care provider trained in the evaluation and management of concussion” was quite advantageous because it broadened the expert qualifications in a state in which rural constituencies are prevalent. It avoided the debate that occurs when one assigns the duties to a specific medical personnel category over another. This lesson had to be learned in several states when physicians battled with other health care providers over primacy to be sole providers of this expert care. The Washington State solution of licensed health care provider trained in concussion management was the legislative compromise that was most effective at the time. The law written in this manner was more practical, as concussion experts such as certified athletic trainers, nurse practitioners, and physician assistants could provide the expert medical care. In addition, in challenged economic times, the concern about costs was raised. The bill was crafted in such a way that it was budget and revenue neutral. There were no extra costs for the education as the CDC had already produced almost all of the educational material and placed it on the Web. The cost savings from preventing brain injury to student athletes would be hard to estimate and perhaps could not be placed in a financial context. It was priceless from a human perspective. In October 2010, the NFL, Seattle Seahawks, BIA-WA, CDC, and the US Army held a conference at the Seattle Seahawks training facility to discuss concussions in youth sports (Figure 2). It was a “call to arms” for legislative action. At the time, 6 other states had adopted the core principles of the Zackery Lystedt Law,




FIGURE 2. The Zackery Lystedt Law Legislative Advocacy Team in 2010. Top row (left to right): Peter McLoughlin, President/ CEO of the Seattle Seahawks & Sounders FC; Jen Carroll, Washington State Athletic Trainers Association; Doug Andreassen, President, Washington State Youth Soccer Association; Richard H. Adler, Principal of the law firm Adler Giersch/Lystedt family attorney/President, Brain Injury Association-Washington; Lisa Thatcher, lobbyist for the Zackery Lystedt Law; Hunt Batjer, MD, Chairman Neurological Surgery, UT Southwestern, Co-Chairman of NFL’s Head, Neck, and Spine Committee; Washington Governor Christine Gregoire; Roger Goodell, NFL Commissioner; General Peter Chiarelli, General US Army; Ilena Arias, PhD, Principal Vice Director, Centers for Disease Control and Prevention; Richard G. Ellenbogen, MD, Chairman Neurological Surgery UW Medicine, Co-Chairman NFL’s Head, Neck, and Spine Committee and UW Medical; Jeff Miller, Executive Vice President of Health and Safety, NFL. Bottom (left to right): Kevin Griffin, Seattle Seahawks and Seattle Sounders FC; Representative Jay Rodne, 5th District; Mike Colbrease, Executive Director, Washington Interscholastic Activities Association; Dick Langum, Cannfield and Associates Risk Insurers; Stanley Herring, MD, Professor UW Medicine/Harborview Medical Center/Team Physician, Seattle Seahawks and Seattle Mariners; Jim Whitehead, Executive Director, American College of Sports Medicine.

and many others were beginning efforts to introduce legislation. But additional efforts, resources, and energy were needed for the road to 50 states plus the District of Columbia. The conference celebrated the efforts of influential representatives of the Washington State medical, legal, and political communities to pass a unique law to make youth sports safer. General Peter Chiarelli, Vice Chairman of the US Army, was a participant and insistent that we continue our quest to protect athletes and warriors exposed to TBI risks. He was struggling with preventing and managing the devastation from improvised explosive devices to our soldiers in Iraq and Afghanistan. He had noted that the Army had introduced a new practice of removing soldiers from combat duties until cleared by a medic or physician after a single exposure to an explosion significant enough to cause a concussion. If the soldier sustained a concussion, he or she would rest and recover and only be placed back into combat if he or she returned to baseline. This new practice had saved many soldiers from sequential TBIs and a poor outcome. General Chiarelli’s observation was not lost on any of the participants. It was clear

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that we needed to redouble our efforts for the other states to ensure that once an athlete was injured, he did not return to play unless an expert cleared him. The NFL’s commitment to the issue began a few months before the conference when Commissioner Goodell wrote to the governors of 44 states without similar laws advocating the adoption of Washington’s Zackery Lystedt Law in their states and announcing the League’s intent to champion this cause. The Commissioner of the NFL enlisted some of his most skilled experts in the battle to assist all 50 states to pass a youth concussion law. Jeff Miller, now NFL Senior Vice President for Health and Safety, an attorney and a former lobbyist, was assigned the formidable task of accomplishing this goal. He was politically savvy and intelligent as he strategically planned to help each state individually pass a youth concussion law. Joe Browne, who was at the October 2010 kickoff in Seattle and a highly experienced and knowledgeable NFL executive, participated, working past his retirement. Just as the BIA-WA hired the right lobbyist in Washington State, the NFL engaged 2 talented and



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dedicated lobbyists, Amy Jorgenson and Ken Edmonds. They were instrumental and relentless in negotiating the treacherous legislative waters on a daily basis. One of the challenges that the NFL faced in some states was to provide a reproducible educational module for the physicians and health care provider experts. This would help each state keep this a budget-neutral bill. Jeff Pash, the Executive Vice President of the NFL devised a method to accomplish this. The Commissioner and he awarded an NFL education grant to the CDC to design and host a Website that would train health care experts. Kelly Sarmiento, MPH, Director of Communications at the CDC, managed this ingenious idea and shepherded it to completion in a matter of months (http://www.cdc.gov/concussion/headsup/clinicians/). Content was provided by recognized experts on concussion and was supported by a host of professional organizations to include the American Association of Neurological Surgeons and the American College of Sports Medicine. The outstanding CDC educational product had a wonderful user interface, robust content, and case studies. The participant could earn a certificate and continuing medical education, continuing nursing education, or continuing education unit credits by completing the module and passing a test. It has become one of the most popular Websites accessed from the CDC (Kelly Sarmiento, MPH, personal oral communication, 2013). It is so popular that school nurses in New York State and US Olympic Medical Staff are required to complete this CDC module. At the 2010 Seattle Conference, Commissioner Roger Goodell announced a specific goal for the NFL’s legislative efforts. Seven states had adopted the Zackery Lystedt Law at that point. The Commissioner committed the league to advocate for passage in an additional 10 states in 2011 and all 50 states in the future. When the Commissioner met privately with me 6 months earlier in Vancouver (before selecting Dr H. Hunt Batjer, MD, to CoChair the NFL’s Head, Neck, and Spine Medical Committee with me), he asked me for concrete goals for the Zackery Lystedt Law. I stated that I wanted to see 10 states pass the Zackery Lystedt Law simply in my lifetime. The Commissioner responded immediately that we must be bolder and could help all 50 states pass youth concussion laws within a shorter time frame! I was impressed and committed and signed on to the volunteer job offered by the Commissioner of the NFL. If the end result improved the safety of youth sports throughout the United States as well as the NFL, it was a job worth doing well. The NFL wasted no time. Within 2 months, the state of New Jersey, working with the NFL, passed its Zackery Lystedt Law. New Jersey commemorated that passage with a signing ceremony hosted by Governor Chris Christie and attended by Commissioner Goodell, New York Jets owner Woody Johnson, and representatives of the New York Giants. Most state legislatures reconvened in January 2011 so the NFL’s advocacy efforts began in earnest then. The League contacted numerous medical and youth health and safety organizations to find allies with whom to partner and share the effort in promoting the laws. Given the novelty of the issue at


the time, no advocacy groups included youth concussions laws on their legislative agenda. Working with partners such as ACSM, led by the diligent and tireless work of its Executive Director, Jim Whitehead, the NFL continued to lead the charge to pass the laws. In preparation for the January 2011 kickoff, the NFL devised a legislative strategy as well. The league connected with national state legislative organizations such as the National Conference of State Legislatures and the Coalition of State Governments (CSG) to heighten the awareness of the issue before state elected officials. The National Conference of State Legislatures agreed to mail every state official across the country a summary of the proposed legislation and highlight the youth concussion issue in its newsletter sent to all state legislative officials. The newsletter ran an interview with Commissioner Goodell touting the importance of the issue for youth health and safety. The interview was supplemented by a full briefing of the issue. The CSG produces an annual publication called “Suggested State Legislation.” The CSG identifies legislation on a variety of topics and sends information on those issues to state legislators around the country. This has the benefit of raising the profile of specific issues and sets a standard for what a model law could look like. Additionally, the NFL, frequently through its 32 member clubs, engaged with lobbyists in a handful of states where it determined there was a relatively strong chance of passage. Through this series of strategies, the NFL raised the profile of the legislation and attracted the attention of numerous state officials and succeeded in drawing attention to the issue. There were many examples of neurological surgeons actively lobbying their state legislators to pass a youth concussion bill; to name just a couple, Professor and Chair Anil Nanda in Louisiana (LSU-Shreveport) and pediatric neurosurgeon Paul Klimo, MD (University of Tennessee) were ardent activists in their states, both testifying and campaigning for a concussion law. In many more states than anticipated, legislators introduced the Zackery Lystedt Law. Frequently, the NFL’s lobbyists under Jeff Miller’s able direction and the experts in Washington State such as Richard Adler and Stanley Herring worked with individual states to craft the bills on introduction and created relationships and allies that lasted throughout the legislative process. To improve the education of lawmakers and in an effort to anticipate critical questions about the proposals, the NFL prepared information packets and distributed them generously to legislators. These included answers to frequently asked questions, fiscal analyses of the bills, testimonials and endorsements from relevant medical organizations, advocates and notable personalities, as well as updates from other states as the bills moved forward. Through lobbyists or in person, the NFL distributed these widely. In addition to educating legislators, the NFL also kept the spotlight on this issue in a number of states by actively participating in the legislative process. Local club personnel supported by League officials and former players and local medical




FIGURE 3. Zackery Lystedt (center) with his father Victor (left) and National Football League Commissioner Rodger Goodell (right) receiving an award for the “Most Inspirational Player on Any Team” at the Brain Injury Association of Washington’s Gala in the fall of 2010.

experts appeared at hearings and press conferences to tout the legislation. The NFL arranged to hold informational sessions for legislators and media members. In addition to raising the bills’ profiles, these events permitted the League and club officials to spend a day with elected officials to promote the effort. It is important to celebrate that in almost every state, individual supporters—local physicians, teachers, youth advocates, youth sports organizers, and others—participated actively in the efforts. In almost every state, these coalitions were joined by at least 1 athlete who sustained a concussion during a game or practice and faced challenges recovering and returning to school. Both girls and boys who played soccer, basketball, softball, and football supported the laws. The genuine heart-wrenching stories and testimonials offered by articulate youth athletes in each state resonated with legislators and contributed significantly to the legislative efforts. Only weeks or months into the effort, several states passed the laws. Arizona and Colorado with the strong assistance of the Arizona Cardinals and Denver Broncos led the way. South Dakota also moved quickly on the legislation. Before the year was out, the 10-state goal had been met (certainly exceeding my expectations; I thought it would take a lifetime)—and then more than doubled. The list of states to enact a Zackery Lystedt Law in 2011 included Alabama, Alaska, Arizona, California, Colorado, Delaware, Illinois, Indiana, Iowa, Kansas, Louisiana, Maryland, Minnesota, Missouri, Nebraska, Nevada, New York, North Carolina, North Dakota, Pennsylvania, South Dakota, Texas, Utah, and the District of Columbia. As of 2014, the core principles of the law have been enacted in some form in ALL 50 states and the District of Columbia.

NEUROSURGERY

In the year after the Zackery Lystedt bill passed in Washington State, our neurological surgery team at Harborview Medical Center/ UW Medicine had operated on no additional student athletes. The final analysis of its effect of the law on prevention of more severe TBI will take years, but we remain hopeful the positive impact of the law will be sustained. With time and continued penetrance, the effect of this law in Washington State has been substantial among coaches and demonstrates both significant concussion education and good concussion knowledge, although improvements are still needed.7,8 Passage of the Zackery Lystedt Law is a testament to the effective collaboration of local, state, and national leaders in a variety of fields to address a critical, global public health challenge affecting student athletes (Figure 3).9,10 It is a testament to the courage of a single remarkable individual and his family to persevere and confront a devastating injury with resilience, dignity, and faith to inspire all of us to action. A podcast associated with this article can be accessed online (http://links.lww.com/NEU/A669). Disclosure The author has no personal, financial, or institutional interest in any of the drugs, materials, or devices described in this article.

REFERENCES 1. Manda J. Seaver AANS Bulletin: Summer 2006 (Volume 15, issue 2) completing the picture: AANS 2006 Workforce Survey Assesses Neurosurgical ER Coverage. 2. Hyder AA, Wunderlich CA, Puvanachandra P, Gururaj G, Kobusingye OC. The impact of traumatic brain injuries: a global perspective. NeuroRehabilitation. 2007; 22(5):341-353.



ELLENBOGEN

3. Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. J Neurotrauma. 2010;27(8):1529-1540. 4. Faul M, Xu L, Wald M, Coronado V. Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations, and Deaths. Atlanta, GA: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2010. 5. Nonfatal traumatic brain injuries related to sports and recreation activities among persons aged #19 years—United States, 2001-2009. MMWR Morb Mortal Wkly Rep. 2011;60(39):1337-1342. 6. Heads Up—Facts for Physicians About Mild Traumatic Brain Injury (MTBI). US Department of Health and Human Services, Center for Disease Control; 2005. Available at: http://www.cdc.gov/concussion/headsup/pdf/facts_for_physicians_booklet-a.pdf. Source citation: Iverson G, Gaetz M, Lovell MR, Collins MW. Cumulative effects of concussion in amateur athletes. Brain Injury. 2004;18(5):433-443.


7. Adler RH. Youth sports and concussions: preventing preventable brain injuries. One client, one cause, and a new law. Phys Med Rehabil Clin N Am. 2011;22(4):721-728, ix. 8. Adler RH, Herring SA. Changing the culture of concussion: education meets legislation. PM R. 2011;3(10 suppl 2):S468-S470. 9. Rivara FP, Schiff MA, Chrisman SP, Chung SK, Ellenbogen RG, Herring SA. The effect of coach education on reporting of concussions among high school athletes after passage of a concussion law. Am J Sports Med. 2014;42(5):1197-1203. 10. Chrisman SP, Schiff MA, Chung SK, Herring SA, Rivara FP. Implementation of concussion legislation and extent of concussion education for athletes, parents, and coaches in Washington state. Am J Sports Med. 2014;42(5):1190-1196.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.neurosurgery-online.com).



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