As UCB attends the 2019 American Epilepsy Society meeting in Baltimore, Maryland this week, Mike Davis, Head of Neurology in the U.S., talks about the long way to go in managing epilepsy, and how UCB is committed to closing this gap by bringing new solutions to market. Read the article on LinkedIn.
'Every day, I’m fueled by the stories of patients and their families who constantly make compromises due to the devastating and frustrating complications of epilepsy. For example, the now college student who’s been living with epilepsy and seizure clusters since he was one year old. There have been many times over the years when he wasn’t able to attend school, participate in family events, or even remember his previous day because his and his family’s entire world revolved around epilepsy.
Helping people - like this young man and his family - find ways to get to their ideal result has driven me since my first day as a research scientist. We still have a long way to go in managing epilepsy, and UCB is committed to identifying and understanding the greatest existing unmet need for patients so that we can develop and bring new solutions to market to close this gap.
One of those unmet needs is the treatment of seizure clusters, a type of seizure emergency, where patients experience multiple seizures, with a recovery period in between, over a number of hours and days.1
It is estimated that more than 150,000 people in the U.S. with uncontrolled epilepsy also experience seizure clusters.2,3,4 While a seizure may only last one to two minutes, a seizure cluster can typically last for hours, and if left untreated, can have potentially serious consequences including hospitalization, mortality, physical injury, neurological damage, and status epilepticus.1,5-12
The parents of this college student have feared long-term damage and have expressed how scary it’s been to watch their child seize for more than 20 minutes without stopping. They want their son to be safe and happy. It is critical that we find a way to stop these seizures and provide a rescue treatment that will allow people living with seizure clusters to live their best lives.
Rescue medications, which are taken “as needed” for specific situations, are commonly used to treat seizure clusters, but only one in five patients with seizure clusters report use of a rescue medication when they need it.1 This is often attributed to the current standard of care, which is a rectally administered gel that is burdensome and embarrassing for some patients.4 As a result, patients often seek out emergency care for treatment. If a patient is hospitalized, costs for commercial patients can be substantial at approximately $38,000 per hospitalization.13 Given the impact on patients, caregivers, and the healthcare system, it is critical to treat a seizure cluster as soon as possible.14
Providing a rescue treatment that meets patients’ needs is a primary focus at UCB. We understand that current solutions may not be effective for every patient with seizure clusters, so we must identify which patients still have the greatest unmet need, and unlock a match between those patients and a solution that helps them better manage their seizure clusters outside of the hospital.
As part of understanding the patients with the greatest need, we seek to understand the fundamentals of how they live their lives. With insight into their day-to-day, we ensure our solutions help make a meaningful difference.
At UCB, a company with over 20 years of expertise in epilepsy, we put patients at the heart of everything we do. To us, that means addressing unmet needs and helping patients, and their caregivers, live the lives they want to live.'
Read the full article on LinkedIn.
About the Author
Mike Davis is Head of the U.S. Neurology Patient Value Unit at UCB. Leading the neurology business in the U.S., Mike is committed to transforming our business to deliver maximum value to patients living with epilepsy and Parkinson’s disease.
- Penovich PE, Buelow J, Steinberg, et al. Burden of seizure clusters on patients with epilepsy and caregivers survey of patient, caregiver, and clinician perspectives. The Neurologist. 2017;22:207–214.
- Zack M, R Kobau. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy. CDC MMWR. 2017. 66:821-825.
- Kwan P, M Brodie. Early Identification of Refractory Epilepsy. NEJM. 2005. 342:314-319.
- Chen B, Choi H, Hirsch L, et al. Prevalence and risk factors of seizure clusters in adult patients with epilepsy. Epilepsy Res. 2017;133:98-102.
- Jafarpour S, Hirsch LJ, Gaínza-Leina M, et al. Seizure cluster: Definition, prevalence, consequences, and management. Seizure. 68:9-15.2019.
- McKee H, A Bassel. Outpatient Pharmacotherapy and Modes of Administration for Acute Repetitive and Prolonged Seizures. CNS Drugs. 2015. 29:55-70.
- Ferastraoaru V. Termination of seizure clusters is related to the duration of focal seizures. Epilepsia. 57(6):889–895, 2016.
- Haut SR, Shinnar S, Moshé SL. Seizure clustering: risks and outcomes. Epilepsia. 2005;46(1):146-149.
- Sillanpää M, Schmidt D. Seizure clustering during drug treatment affects seizure outcome and mortality of childhood-onset epilepsy. Brain. 2008;131(Pt 4):938-944.
- Haut S. Seizure clusters: characteristics and treatment. Current Opinion Neurology. 28:143–150, 2015.
- Status Epilepticus. Epilepsy Foundation. Accessed November 4, 2019. https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergencies/status-epilepticus.
- Buck D, et al. Patients' Experiences of Injury as a Result of Epilepsy. Epilepsia. 38(4):439-444, 1997.
- Data on file. UCB, Inc. IBM MarketScan Commercial Claims research database (CCMC 2008-2018 v0.1).
- Using Rescue Medications. Epilepsy Foundation. Accessed November 19, 2019. https://www.epilepsy.com/learn/managing-your-epilepsy/using-rescue-treatments