Colleagues, patients and family mourned the passing of one of the great pioneers in the field of multiple sclerosis (MS) when Dr Kenneth Johnson died on September 3, 2011, at the age of 79. A distinguished neurologist and academic researcher, Johnson left behind a rich legacy of achievements and will long be remembered as a visionary leader who exhibited exceptional humility and kindness.
Born and raised in Jamestown, New York, USA, Johnson graduated from Upsala College in New Jersey, USA in 1955. In 1959, he received a medical degree from Jefferson University School of Medicine in Philadelphia, USA, and subsequently completed an internship at Buffalo General Hospital in New York. After military service at the Naval Hospital in Portsmouth, Virginia, USA, Johnson completed his neurological residency in 1965 at Case Western Reserve University (OH, USA).
Drawn to the field of neuroscience, Johnson gravitated early toward research involving viral and immune-mediated disorders of the CNS. In 1968 he completed a fellowship with Richard T Johnson, one of the founding fathers of neurovirology, who guided his study of California encephalitis virus and virus-induced hydrocephalus. After this fellowship, while holding faculty positions at Case Western Reserve University, Johnson continued to conduct research that contributed significantly to the understanding of viral infections within the CNS. In 1974, Johnson accepted a position as Associate Professor at the University of California, San Francisco, where he turned his focus to MS, a debilitating demyelinating disease for which only symptomatic treatments then existed. Under the guidance of J Richard Baringer, MD, a specialist in slow viral diseases, Johnson conducted MS research while serving as an attending physician at San Francisco General Hospital. During this time, Johnson was recognized for research contributing to the now well-known diagnostic significance of oligoclonal bands in the spinal fluid of patients with MS.
While in San Francisco, Johnson met Hillel Panitch, a promising young neurovirologist with whom he would form a long and collaborative partnership. In the 1970s both men subscribed to an increasingly popular theory (which remains unproven) that MS is caused by an occult viral infection, and both speculated that an interferon might prove to be an effective treatment. Together they were recognized for designing and conducting some of the first clinical trials to test this family of antiviral proteins for the treatment of MS.
Johnson and Panitch began to attract international attention with the interferon studies, and in 1981, the University of Maryland (MD, USA) offered Johnson the position of Chairman of the Department of Neurology. Johnson accepted and was later joined by Panitch, with whom he continued research involving IFN-γ and IFN-β. The highly publicized results of their trial of IFN-γ, which unexpectedly increased disease activity, provided valuable information that led to a paradigm shift in the understanding of MS pathology; that is, that MS relapses are immunologically mediated. Encouraged by early results of research involving IFN-β, Johnson went on to become a lead investigator in the pivotal clinical trial that led to the approval by the US FDA, in 1993, of IFN-β1b (Betaseron®; Bayer Healthcare Pharmaceuticals, NJ, USA) the first disease-modifying treatment for MS.
Long before the approval of Betaseron, Johnson developed an interest in a complex synthetic copolymer known as copolymer 1 (now known as glatiramer acetate), which had been discovered by a team of scientists at the Weizmann Institute in Israel. Recognizing the enormous potential of this immunomodulator, Johnson became instrumental in orchestrating clinical trials of glatiramer acetate, providing leadership and coordinating the efforts of a small Israeli drug company (Teva Pharmaceutical Industries), the National Multiple Sclerosis Society (NMSS) and the FDA. Johnson eventually led the multicenter pivotal clinical trial that resulted in FDA approval of Copaxone® (glatiramer acetate injection; Teva Pharmaceuticals, Israel) in 1996. This ongoing study, now in its 20th year, is the longest continuous study of an MS therapy ever conducted.
Johnson brought extraordinary vision and remarkable political and organizational skills not only to his research but also to his 20 years as chair of the Department of Neurology at the University of Maryland. Shortly after his arrival at the university, Johnson gained a reputation as a gifted administrator and a thoughtful and inspiring mentor. As a talented principal investigator who was able to attract NIH grants, he fostered the careers of numerous young faculty members and physicians, many of whom, in turn, have become leaders in MS research.
In 1981, after envisioning a center where individuals with MS could seek proper diagnosis and long-term care, Johnson founded the Maryland Center for Multiple Sclerosis. In the decades since, the center has expanded enormously; an institution that now cares for more than 2000 patients, it has become a leader in basic research and clinical trials. During the 1980s, Johnson also succeeded in turning a personal interest in neurological repair and recovery from neurological insult toward the development of one of the first neurorehabilitation programs and neurorehabilitation fellowships in the country. Today, the James Lawrence Kernan Hospital in Baltimore (MD, USA) a legacy of Johnson’s early efforts, is one of the largest providers of rehabilitation services in Maryland. In a collaborative effort with colleague Christopher Bever, MD, Johnson helped establish the Veteran Administration’s MS Centers of Excellence, with cooperative clinics located in Seattle, Portland and Baltimore, improving services for veterans with MS around the country. Moreover, Johnson’s efforts fostered strong research and clinical care relationships among Kernan Hospital, the VA medical centers, Johns Hopkins, the NIH, and other great rehabilitation centers around the country and around the world that have improved the lives of thousands of MS patients. Many of these centers are staffed by fellows and residents trained in the neurorehabilitation program begun by Johnson.
Johnson’s leadership in many national and international programs was well known by members of the international MS community. His deep appreciation of the European Committee on Treatment and Research in Multiple Sclerosis, established in 1982 to foster communication and disseminate knowledge among members of the MS community, inspired his vision of developing a North American counterpart. In 1995, Johnson brought together Canadian and American neurologists and neuroscientists who specialized in MS and founded what is now known as the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS). The mission of ACTRIMS is to attract young physicians and scientists to clinical and basic research in the field of MS, and to encourage sharing of knowledge and expertise. Johnson served as the first president of ACTRIMS and was credited with organizing the first joint meeting of ACTRIMS and the European Committee on Treatment and Research in Multiple Sclerosis (ECTRIMS) in Basel, Switzerland in 1999. He also hosted a second joint meeting in Baltimore in 2002. Triennial meetings have taken place since, and in 2008 the international meeting included, for the first time, the Latin American Committee for Treatment and Research in Multiple Sclerosis (LACTRIMS).
In addition to his extraordinary international efforts, Johnson accepted appointments to senior leadership positions at the NMSS, where he served on the Research Programs Advisory Council and on the Clinical Advisory Board. In 2000, in recognition of these roles and his leadership in the development of two of the most commonly prescribed drugs for MS, glatiramer acetate and IFN-β, the NMSS and the American Academy of Neurology jointly awarded Johnson the prestigious John J. Dystel Prize for research in MS.
In 2001, Johnson officially retired from the University of Maryland, but continued to serve the university for close to a decade in an emeritus role. He also worked at NMSS on the Database Advisory Panel, which helped to establish the Sonya Slifka Longitudinal Multiple Sclerosis Study, the nation’s first comprehensive longitudinal study of the impact of MS over time on the lives of people with the disease. Johnson also served as president of the Consortium of MS Centers from 2004 to 2005, and during his presidency he teamed with the Multiple Sclerosis Association of America and the Multiple Sclerosis Foundation to found the Multiple Sclerosis Coalition. In 2010, Johnson received the Consortium of Multiple Sclerosis Centers Lifetime Achievement Award.
Johnson authored more than 175 scientific articles in international medical journals (including his paper on page 371 of this issue of Expert Review of Neurotherapeutics). In 2010, Johnson published work of great personal significance, recounting the saga behind the development and approval of Copaxone, one of the most widely prescribed immunomodulatory treatments for MS. In ‘The Remarkable Story of Copaxone: An Approach to the Treatment of Multiple Sclerosis,’ Johnson characteristically downplays his own efforts and devotes considerable focus to the many individuals who participated in the development of the drug. He also repeatedly expresses gratitude to the many patients with MS who have participated in clinical trials.
In a touching eulogy delivered to members of the Consortium of MS Centers, colleague-turned-patient Alan Levitt, MD, no doubt spoke for countless individuals as he related his first-hand experience of Johnson’s kindness after Levitt himself was diagnosed with MS. Levitt told how Johnson, his former mentor, stayed with him from the beginning, even accompanying him to the emergency room for a spinal tap. Near the end of the eulogy, Levitt shared a characteristic statement from Johnson, made in response to Levitt’s expression of thanks: “You should thank all of the patients who participated in my studies,” Johnson replied, “They are the true heroes.”
Written by Susan Worley and Sheila Truten.