Career Center AES Connect
Mar 25, 2026

On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Authors: Marjorie E. Bunch, MD , Jessica Falco-Walter, MD, Sasha Alick-Lindstrom, MD, MPH, Abrar O. Al-Faraj, MD, Brandy E. Fureman, PhD, James Herbst, PharmD, BCPPS, Lisa C. Garrity, PharmD, SM, Shilpa Klocke, PharmD, BCPS, Alain Lekoubou, MD, MS, Lara V. Marcuse, MD, and Lauren Orciuoli, MPH, MBA

 

The AES is committed to improving outcomes for PWE. ASMs are an essential component of epilepsy care, and timely access is critical. In AES surveys, 65% of PWE and 72% of caregivers reported difficulty obtaining medications, with 95% of HCPs recognizing access as a problem. Cost can lead to PWE taking less medication12 and nonadherence leads to higher healthcare expenses, despite savings from reduced cost of medication.11 Missed medication leads to seizures, ER visits, injuries, and hospitalizations.10,11,23,24 11% of surveyed HCPs reported patient death resulting from medication access delay.

Meaningful change requires coordinated action from clinicians, insurers, regulators, pharmacy associations, legislators, and advocacy groups. The AES supports coordinated efforts among these stakeholders to eliminate unnecessary barriers to medication access through the following principles:

 

1. Regulatory Reform:

Rationale: Survey data revealed “too soon to refill” as the most common barrier reported by PWE (37%), caregivers (39%), and HCPs (44%). Controlled substance regulations were the most frequently cited issue in HCP free-text responses (34%), with DEA scheduling creating narrow refill windows that lead to missed doses when pharmacies lack stock.
  • Eliminate unnecessary restrictions on refill timing for ASMs including adequate refill windows for authorization and medication shipment
  • Advocate for de-scheduling ASMs when abuse potential is low
  • Remove barriers to prescription transfers between pharmacies for all ASMs, including controlled substances

 

2. Improve Availability:

Rationale: Medication unavailability was the second most common barrier for PWE (25%) and the most common barrier for caregivers (54%), indicating widespread supply chain disruptions affecting timely access.
  • Increase transparency for supply chain disruptions
  • Improve communication of medication availability and timeframe for resolution
  • Establish pharmacy accountability for maintaining adequate stock of prescribed ASMs

 

3. Insurance Reform:

Rationale: Insurance was identified by HCPs as the most frequent barrier to medication access. In our survey, 55% of HCPs reported being asked by insurers to prescribe medications inappropriate for their patients. Insurance coverage barriers affected 23% of PWE and 43% of caregivers.
  •  Streamline prior authorization
  • Eliminate step-therapy requirements that contradict evidence-based epilepsy management
  • Advocate for automatic continuation of medication coverage
  • Transparency of coverage and copayment when selecting an insurance plan

 

4. Cost Containment:

Rationale: Cost barriers affected 20% of PWE and 22% of caregivers for out-of-pocket expenses. HCPs identified cost as a frequent barrier (57%), highlighting the need for pricing transparency and cost controls.
  • Support generic alternatives that maintain seizure control
  • Advocate for transparency in drug pricing, including pharmacy benefit manager markups and rebate structures

 

5. Practice Support and Education:

Rationale: Access barriers resulted in breakthrough seizures (27% of PWE), skipped doses (21% of PWE), inability to obtain rescue medications (29% of PWE), and significant emotional stress (25% of caregivers).
  • Develop clinical protocols for managing medication access delays and breakthrough seizures
  • Create standardized tools for expedited prior authorizations and insurance appeals
  • Educate HCPs on patient assistance programs, alternative pharmacy options, and cost-effective prescribing
  • Empower patients with resources on insurance navigation, refill timing, and emergency medication supplies
  • Promote 90-day prescriptions and mail-order pharmacies where clinically appropriate

 

6. Research:

  • The AES remains committed to promoting research and surveillance on access-related outcomes.

References
1. Epilepsy - WHO Fact Sheet. Updated 2/7/2024. Accessed 6/18/2025, https://www.who.int/news-room/fact-sheets/detail/epilepsy
2. Fiest KM, Sauro KM, Wiebe S, Patten SB, Kwon CS, Dykeman J, Pringsheim T, Lorenzetti DL, Jette N. Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology. Jan 17 2017;88(3):296-303. doi:10.1212/WNL.0000000000003509
3. Zack MM, Kobau R. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy - United States, 2015. MMWR Morb Mortal Wkly Rep. Aug 11 2017;66(31):821-825. doi:10.15585/mmwr.mm6631a1
4. Duncan JS, Sander JW, Sisodiya SM, Walker MC. Adult epilepsy. Lancet. Apr 1 2006;367(9516):1087-1100. doi:10.1016/S0140-6736(06)68477-8
5. Kanner AM, Bicchi MM. Antiseizure Medications for Adults With Epilepsy: A Review. JAMA. Apr 5 2022;327(13):1269-1281. doi:10.1001/jama.2022.3880
6. Walsh A. Coroner: Man suffered fatal fall after receiving IOU for epilepsy drug. Pharmacy Magazine: Communications International Group Ltd 2025.
7. Samsonsen C, Reimers A, Brathen G, Helde G, Brodtkorb E. Nonadherence to treatment causing acute hospitalizations in people with epilepsy: an observational, prospective study. Epilepsia. Nov 2014;55(11):e125-8. doi:10.1111/epi.12801
8. Donahue MA, Akram H, Brooks JD, Modi AC, Veach J, Kukla A, Benard SW, Herman ST, Farrell K, Ficker DM, Zafar SF, Trescher WH, Sirsi D, Phillips DJ, Pellinen J, Buchhalter J, Moura L, Fureman BE, as the Epilepsy Learning Healthcare S. Barriers to Medication Adherence in People Living With Epilepsy. Neurol Clin Pract. Feb 2025;15(1):e200403. doi:10.1212/CPJ.0000000000200403
9. Malek N, Heath CA, Greene J. A review of medication adherence in people with epilepsy. Acta Neurol Scand. May 2017;135(5):507-515. doi:10.1111/ane.12703
10. Faught E, Duh MS, Weiner JR, Guerin A, Cunnington MC. Nonadherence to antiepileptic drugs and increased mortality: findings from the RANSOM Study. Neurology. Nov 11 2008;71(20):1572-8. doi:10.1212/01.wnl.0000319693.10338.b9
11. Davis KL, Candrilli SD, Edin HM. Prevalence and cost of nonadherence with antiepileptic drugs in an adult managed care population. Epilepsia. Mar 2008;49(3):446-54. doi:10.1111/j.1528-1167.2007.01414.x
12. Tian N, Kobau R, Zack MM, Greenlund KJ. Barriers to and Disparities in Access to Health Care Among Adults Aged >/=18 Years with Epilepsy - United States, 2015 and 2017. MMWR Morb Mortal Wkly Rep. May 27 2022;71(21):697-702. doi:10.15585/mmwr.mm7121a1
13. Ernst LL. Drug Enforcement Administration scheduling negatively impacts patients with epilepsy: A call to action. Epilepsia. Jul 5 2025;doi:10.1111/epi.18546
14. Javarayee P, Meylor J, Shahrukh S, Pollock S, Andrade-Machado R, Sah J, Patel H. US Generic Antiseizure Medication Supply Chain: Observations from Analysis of US Government Databases. Seizure. Apr 2024;117:83-89. doi:10.1016/j.seizure.2024.02.003
15. Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O'Neal L, McLeod L, Delacqua G, Delacqua F, Kirby J, Duda SN, Consortium RE. The REDCap consortium: Building an international community of software platform partners. J Biomed Inform. Jul 2019;95:103208. doi:10.1016/j.jbi.2019.103208
16. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. Apr 2009;42(2):377-81. doi:10.1016/j.jbi.2008.08.010
17. Gotlieb E, Lally A, Blank LJ, Jette N. Geographic Heterogeneity in Epilepsy Specialist Distribution. Neurology. Sep 23 2025;105(6):e214035. doi:10.1212/WNL.0000000000214035
18. Transfer of Electronic Prescriptions for Schedules II-V Controlled Substances Between Pharmacies for Initial Filling. Drug Enforcement Administration. Updated July 27, 2023. Accessed 1/23/2026, https://www.federalregister.gov/documents/2023/07/27/2023-15847/transfer-of-electronic-prescriptions-for-schedules-ii-v-controlled-substances-between-pharmacies-for
19. Hawkins KL, Gidal BE. When adverse effects are seen as desirable: Abuse potential of the newer generation antiepileptic drugs. Epilepsy & Behavior. Dec 2017;77:62-72. doi:10.1016/j.yebeh.2017.10.007
20. Pironi V, Ciccone O, Beghi E, Paragua-Zuellig H, Patel AA, Giussani G, Bianchi E, Venegas V, Vigevano F, Treatment ITFoAt. Survey on the worldwide availability and affordability of antiseizure medications: Report of the ILAE Task Force on Access to Treatment. Epilepsia. Feb 2022;63(2):335-351. doi:10.1111/epi.17155
21. Smith AG. Looming Crisis of Financial Toxicity in Neurologic Drug Pricing: From Out-of-Pocket to Out-of-Community Costs. Neurology. Feb 28 2023;100(9):401-402. doi:10.1212/WNL.0000000000201725
22. Gotlieb E, Joseph B, Blank L, Jette N. Barriers and Consequences of Prior Authorization for Neurologic Medications: A Scoping Review. JAMA Neurol. Dec 8 2025;doi:10.1001/jamaneurol.2025.4560
23. Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. Epilepsy Behav. Aug 2002;3(4):338-342. doi:10.1016/s1525-5050(02)00037-9
24. Manjunath R, Davis KL, Candrilli SD, Ettinger AB. Association of antiepileptic drug nonadherence with risk of seizures in adults with epilepsy. Epilepsy Behav. Feb 2009;14(2):372-8. doi:10.1016/j.yebeh.2008.12.006
25. Eatock J, Baker GA. Managing patient adherence and quality of life in epilepsy. Neuropsychiatr Dis Treat. Feb 2007;3(1):117-31. doi:10.2147/nedt.2007.3.1.117
26. Welty TE, Willis SL, Welty EA. Effect of limited transportation on medication adherence in patients with epilepsy. J Am Pharm Assoc (2003). Nov-Dec 2010;50(6):698-703. doi:10.1331/JAPhA.2010.09081
27. Gilliam F, Kuzniecky R, Faught E, Black L, Carpenter G, Schrodt R. Patient-validated content of epilepsy-specific quality-of-life measurement. Epilepsia. Feb 1997;38(2):233-6. doi:10.1111/j.1528-1157.1997.tb01102.x

 

 

 

Read the full position statement

Epilepsy Currents Position Statement

For a deeper dive into the full position statement, including the complete analysis and recommendations from the authors, read the article in Epilepsy Currents.

Read the full position statement