At UCB, our core belief has remained solid for more than 90 years: Everyone deserves to live the best life that they can – as free as possible from the challenges and uncertainty of disease. This belief fuels our ambition to create value and make real improvements in the lives of people living with severe diseases.
As a continuation of our leadership and heritage in epilepsy and a progression of our science, UCB is leveraging our experience to develop treatments for rare neurological diseases, such as myasthenia gravis (MG). MG represents a rare, chronic auto-immune neuromuscular disease characterized by episodes of fluctuating muscle weakness, which can result in symptoms such as drooping eyelids and double vision in addition to more severe and life-threatening failure of the muscles that help with swallowing and respiration. For people living with MG, these symptoms are unpredictable and may appear and disappear on a day-to-day basis. These symptoms also may threaten a patient’s independence and ability to work, and interfere with aspects of their everyday lives.
As part of our commitment, UCB will be presenting data and hosting a symposium at this year’s American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Conference, which is being held October 13-16, 2021, in Aurora, Colorado. UCB also will be hosting booths for medical information (#126) and disease state information (#108, #110, #112) during the conference.
“UCB’s origins in rare disease and in myasthenia gravis are the result of one of our own scientists, who saw a family member suffer the ongoing challenges from a rare auto-immune disease and the burden of the current standard of care, and took action to try and improve treatment," said Jeff Boutelle, Head of U.S. Rare Disease Strategy. “We are proud to be sharing data at AANEM and the MGFA’s Scientific Exhibit, which will help us all to better understand the importance of access to medications for people living with MG and to improve the treatment landscape for this debilitating disease.”
Across two presentations1,2, both drawing upon a retrospective analysis of a U.S. insurance claims database, UCB will highlight the importance of improved access to an expanding number of treatment options with the aim of addressing some of the challenges currently faced by many MG patients. UCB will describe how generalized myasthenia gravis (gMG), a more severe form of MG that may result in unpredictable symptoms that cause weakness throughout the entire body, represents a significant healthcare burden for patients, payors, and healthcare providers and will shed light on the need for additional treatment options beyond currently available therapies.
UCB also will host an educational symposium at AANEM 2021 entitled ‘Connect, Act, Evolve: Collaborating to Reduce the Burden of Generalized Myasthenia Gravis.’ The symposium will explore the unpredictability of current gMG treatments and the extent to which this impacts patients’ daily lives. Dr. Pushpa Narayanaswami, Vice-Chair, Clinical Operations, Department of Neurology, Beth Israel Deaconess Medical Center and Associate Professor of Neurology, Harvard Medical School; Professor James (Chip) Howard Jr., Professor of Neurology, Medicine & Allied Health, University of North Carolina at Chapel Hill; and Glenda Thomas, MG patient, patient advocate, and member of the Rare Disease Advisory Council of Massachusetts, will participate in the live symposium on Friday, October 15, 7:00–8:00am MDT in the Juniper Ballroom of the Gaylord Rockies Hotel.
UCB also will participate in the Myasthenia Gravis Foundation of America’s Scientific Session on October 30. Data presentations will include a report that highlights how the severity of gMG symptoms correlate to a reduction in productivity at work and a lower quality of life.3 A second data presentation will show the results of a global survey of MG physicians and patient caregivers in which 38% of the caregivers report assisting MG patients with walking, shopping, and emotional support at an average of 30 hours per week, which has an impact on the caregivers' work and personal lives. 4 The third study will reveal a disconnect between healthcare providers and people living with MG, citing the need for better communication tools and more mutual understanding of the burden of the disease. 5
UCB’s ongoing work and unwavering focus keep people living with MG at the heart of everything we do, and we are committed to finding solutions for rare diseases, like MG, with a high degree of patient need by delivering purposeful innovations and differentiated solutions, creating value that cannot be expressed in numbers alone.
- 786211908/ROZ-ABS-053875 Management of myasthenia gravis is a high healthcare burden: A retrospective analysis of United States claims data. M. Mahic (Slough, United Kingdom); P. Zaremba (Katowice, Poland); J. Rudnik (Warszawa, Poland); A. Bozorg (Raleigh, NC, USA), P. Dolin (Slough, United Kingdom)
- 786211563/ROZ-ABS-053874 Currently used therapies for myasthenia gravis do not provide adequate disease control for many patients: A retrospective analysis of United States claims data. M. Mahic (Slough, United Kingdom); P. Zaremba (Katowice, Poland); J. Rudnik (Warszawa, Poland); A. Bozorg (Raleigh, NC, USA); P. Dolin (Slough, United Kingdom)
- 786212019 / ROZ-ABS-054502 Perspectives on myasthenia gravis: The impact on quality of life, productivity and employment in the United States. M. Mahic (Slough, United Kingdom); A. Bozorg (North Carolina, United States); A. Scowcroft (Slough, United Kingdom; M. Mackechnie (Slough, United Kingdom); K. Golden (Bollington, Cheshire, United Kingdom); C. Taylor (Bollington, Cheshire, United Kingdom)
- 786212021/ROZ-ABS-054503 Perspectives on myasthenia gravis: The quality of life and productivity of caregivers. M. Mahic (Slough, United Kingdom); A. Bozorg (Raleigh, NC, United States); A. Scowcroft (Slough, United Kingdom); M. Mackechnie (Slough, United Kingdom); K. Golden (Bollington, Cheshire, United Kingdom); G. Gibson (Bollington, Cheshire, United Kingdom)
- 786211886/ROZ-ABS-054455 Contrasting views of myasthenia gravis disease assessment: Insights from a mobile health co-design process involving people living with myasthenia gravis and healthcare professionals. Kenza Seddik (Paris, France); Jean-Christophe Steels (Liège, Belgium), Nancy Law (Parker, CO, USA), Annie Archer (Nanterre, France), Patrick Glinski (Ottawa, ON, Canada)