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

Abstract

Rationale

Seizure medication must be taken regularly to be effective; seizures often result from missed doses. Numerous barriers can delay people with epilepsy (PWE) from obtaining medication on time.

Methods

Two surveys were designed, one for PWE and their caregivers and one for healthcare providers (HCPs). Surveys were delivered electronically and data analysis was descriptive.

Results

Medication unavailability was the most common barrier reported. Additional barriers in order of decreasing frequency included: the message “too soon to refill,” insurance coverage, prescription delay, and cost. For non-active drivers, transportation was a barrier. Sequelae of delayed medication access included: stress, emergency medication utilization, and hospitalization. Access to seizure medications was recognized as a problem by 95% of HCP surveyed, most frequently attributed to insurance barriers and cost. Over 10% of HCP reported a patient death from a medication access issue.

Conclusion

The American Epilepsy Society's Position Statement on medication access supports reducing obstacles that delay obtaining medication through a multifaceted approach. It recommends elimination of unnecessary regulatory barriers, cost containment and insurance reform, supply chain transparency, practice management guidance, and ongoing research.

Keywords

adherence seizures supply missed consequences doses availability

Introduction

Epilepsy is a common, chronic health condition with significant morbidity and premature mortality that affects over 3.4 million people in the United States.^1–3 Medication is the mainstay of treatment for epilepsy, providing seizure freedom in two-thirds of individuals when appropriate medications are taken as prescribed.⁴ Antiseizure medication (ASM) is not curative but needs to be taken consistently to maintain efficacy.⁵ A single missed or delayed dose can result in a breakthrough seizure, with immediate consequences including reduced quality of life, injury, loss of driving privileges, missed school and work, and even death.⁶

Medication nonadherence is a common challenge in epilepsy management,^5,7,8 with reported rates from 18 to 79%.^8,9 Nonadherence results in increased healthcare utilization and costs, and increased mortality.^10,11 Adherence to ASMs is multifactorial, including access to care as well as intending to and remembering to take medication. No adherence strategy can succeed if the medication itself is unavailable when needed. Several factors make obtaining medications challenging for people with epilepsy (PWE). PWE are more likely to lack transportation, use public health insurance, and have difficulty affording medication.^3,12 Additionally, many ASMs are controlled substances, requiring more frequent prescriptions due to restrictions on refills and days supplied. These requirements create narrow windows for requesting and picking up medications.¹³ These challenges are compounded by availability delays: supply chain issues, pharmacy refill restrictions, and stocking practices.¹⁴

The American Epilepsy Society (AES) Treatments Committee Medication Access Workgroup was established in 2023 in response to the recognition of these challenges. Literature review revealed need for more information on causes and consequences to identify priorities for systemic improvement. Two online surveys captured perspectives from, 1) PWE/caregivers and 2) healthcare providers (HCPs).

Methods

Survey questions were developed using input from HCPs and caregivers, targeted literature review, and prior related studies. PWE, caregivers, and HCPs evaluated the surveys for face and content validity. The study protocol was approved by the Albany Medical College IRB. No incentives were offered.

Voluntary participation was solicited electronically from PWE and caregivers via epilepsy advocacy organizations and from HCPs via professional society listservs and online communities. Surveys are provided in Appendix A. All survey items were optional due to the potentially sensitive nature of responses.

Data was collected from September 27, 2024, through January 15, 2025, using REDCap hosted at Albany Medical College.^15,16 Data analysis was qualitative. Free-text responses were independently coded by reviewers, with discrepancies resolved by consensus or adjudicated by a third reviewer when needed. Additional information is available in Table 1.

Table 1.

Survey Design Methodology and Participation.

Metric	PWE/Caregiver Survey	HCP Survey
Primary distribution	Epilepsy Foundation, Epilepsy Leadership Council, Rare Epilepsy Network	AES listservs, AAN Synapse Communities
Email reach	Not tracked^a	47,210 individuals (AES listservs) 2200 individuals (Epilepsy Synapse Community) 2100 individuals (General Neurology Synapse Community)
Email open rate	N/A^a	39.7% (AES listservs)
Click-through rate	N/A^a	1.5% (AES listservs)
Total responses	256	319
Valid responses (U.S.)	226 (92 PWE, 134 caregivers)	243
Geographic reach	22 + states (PWE), 29 + states (caregivers)	40 + states, Washington D.C., Puerto Rico
IRB approval	Albany Medical College	Albany Medical College
Data collection period	September 27, 2024 - January 15, 2025	September 27, 2024 - January 15, 2025
Data analysis	Qualitative	Qualitative

^aSurvey links were distributed at the discretion of each organization and included social media postings.

HCP, healthcare provider; AES, American Epilepsy Society.

People With Epilepsy / Caregiver Survey Results

There were 256 respondents to the PWE/caregiver survey. Four did not identify either as a PWE or caregiver, and 29 never used seizure medication; both were excluded. Three PWE also identified as caregivers. The final analytic sample included 92 PWE and 134 caregivers. Respondent demographic and epilepsy characteristics are shown in Tables 2 and 3. Available zip code data indicated representation from at least 22 and 29 U.S. states among PWE and caregivers, respectively. Reported difficulties, management strategies, and consequences of missed dose(s) are shown in Figure 1. Free-text responses are summarized in Supplementary Table S1. Of the 92 respondents who had used ASMs, 60 (65.2%) reported having trouble filling or refilling a prescription; 21 (22.8%) reported no difficulty, and 11 (12.0%) did not respond. The most common difficulty was being told it was “too soon to refill,” despite need (34, 37%). The second most common difficulty was “medication not available” when needed (23, 25%), followed by insurance coverage (21, 22.8%). Overall, 15 respondents (16.3%) listed transportation as a barrier. Among respondents who were not active drivers 33% (9/27) cited transportation as a barrier, compared with 7.1% (2/28) of active drivers.

Figure 1.

PWE and Caregiver Responses on Medication Access 190 × 355 mm (96 × 96 DPI).

Table 2.

Demographics of PWE (92) and the PWE Under Care of Caregiver (134).

	PWE (% Total)	Person Under Care (% Total)
Current Age
0–17 years	2 (2.2%)
18–34 years	14 (15.2%)
35–54 years	28 (30.4%)
55 years or older	13 (14.1%)
Prefer not to say / Missing	35 (38.0%)
0–17 years		70 (52.2%)
18 years or older		47 (35.1%)
Prefer not to say / Missing		17 (12.7%)
Gender
Female	42 (45.7%)	54 (40.3%)
Male	15 (16.3%)	62 (46.3%)
Other	0 (0%)	0 (0%)
Prefer not to say / Missing	35 (38.0%)	18 (13.4%)
Ethnicity
Hispanic or Latino	3 (3.3%)	8 (6.0%)
Not Hispanic or Latino	40 (43.5%)	104 (77.6%)
Other / Unknown	10 (10.9%)	2 (1.5)
Prefer not to say / Missing	39 (42.4%)	20 (14.9%)
Race (could select more than one, can total more than 100%)
American Indian or Alaska Native	4 (4.3%)	1 (0.7%)
Asian	2 (2.2%)	1 (0.7%)
Black or African American	3 (3.3%)	2 (1.5%)
Native Hawaiian or Other Pacific Islander	0 (0%)	0 (0%)
White	44 (47.8%)	106 (79.1%)
Other / Unknown	1 (1.1%)	4 (3.0%)
Prefer not to say / Missing	38 (41.3%)	20 (14.9%)

Table 3.

Descriptors of PWE (92) and the PWE Under Care of Caregivers (134).

	PWE (% Total)	Person Under Care (% Total)
Highest level of education completed
Not yet completed high school	2 (2.2%)	78 (58.2%)
High school graduate	14 (15.2%)	35 (26.1%)
Completed trade school	5 (5.4%)	2 (1.5%)
College graduate	33 (35.9%)	2 (1.5%)
Post-graduate degree	3 (3.3%)	0 (0%)
Missing	35 (38.0%)	17 (12.7%)
Current insurance (could select more than one, can total more than 100%)
Private	20 (21.7%)	77 (57.5%)
Medicare	10 (10.9%)	14 (10.4%)
Medicaid	12 (13.0%)	46 (34.3%)
VA, Tri-Care, other government	3 (3.3%)	9 (6.7%)
Other	5 (5.4%)	9 (6.7%)
None	6 (6.5%)	1 (0.7%)
Prefer not to say / Missing	38 (41.3%)	16 (11.9%)
Current number of daily ASMs taken by person with epilepsy
0	2 (2.2%)	1 (0.7%)
1	37 (40.2%)	26 (19.4%)
2	23 (25.0%)	30 (22.4%)
3	13 (14.1%)	33 (24.6%)
4 or more	7 (7.6%)	27 (20.1%)
Missing	10 (10.9%)	17 (12.7%)
Number of years total on ASMs
Less than 2 years	4 (4.3%)	29 (21.6%)
3 −10 years	33 (35.9%)	54 (40.3%)
More than 10 years	44 (47.8%)	35(26.1%)
Missing	11 (12.0%)	16 (11.9%)
Current employment status
Employed	28 (30.4%)	11 (8.2%)
Not employed	29 (31.5%)	107 (79.9%)
No answer	35 (38.0%)	16 (11.9%)
Current driving status
Active driver	28 (30.4%)
Not active driver	27 (29.3%)
No answer	37 (40.2%)

ASM, antiseizure medication.

As a result of difficulties obtaining medication, 27 respondents (29.3%) reported not obtaining rescue medication when needed, and 19 (20.7%) indicated skipping multiple doses. Reported consequences included financial impact (31, 33.7%) and breakthrough seizures (25, 27.2%).¹⁷ Of the 134 caregivers who provided ASMs to PWE, 97 (72.4%) reported having difficulty obtaining medication at least once. The most common reason was medication unavailability (72, 53.7%), although other reasons were also frequently reported. Despite these challenges, 43 caregivers (32.1%) reported making no change. Reported consequences included stress (33, 24.6%) and seizures (24, 17.9%).

Healthcare Provider Survey Results

There were 319 unique responses in the HCP survey; three respondents were not HCPs and were excluded. Of the remaining respondents, 10 were located outside the U.S.; 17 provided invalid zip codes, and 46 did not provide zip codes. Only the 243 responses with valid US zip codes were included in the analysis, which showed representation from at least 40 U.S. states as well as Washington D.C. and Puerto Rico.

Respondents identified as epileptologists (149, 61.3%), neurologists (33, 13.6%), nurse practitioners or physician assistants (36,14.8%), or “other” (25, 10.3%), with further descriptors provided in Table 4.

Table 4.

HCP Characteristics (243).

	Number (%)
Type of provider
Epileptologist	149 (61.3%)
Neurologist	33 (13.6%)
Nurse practitioner / Physician assistant	36 (14.8%)
Other ^a	25 (10.3%)
Majority of PWE cared for under 18 years of age
No	152 (62.6%)
Yes	91 (37.4%)
Number of PWE seen weekly
Less than 5	23 (9.5%)
5–10	48 (19.8%)
11–20	64 (26.3%)
More than 20	108 (44.4%)
Support staff for medication access
No	25 (10.3%)
Yes	218 (89.7%)
Time spent per week on medication access (HCP and staff)
Less than 5 h	57 (23.5%)
5 −10 h	86 (35.4%)
11–20 h	41 (16.9%)
21–40 h	33 (13.6%)
More than 40 h	12 (4.9%)
Unknown	14 (5.8%)
^a Free-text description for “other”
Pharmacist (6)	Advocate
Nurse (4)	Epilepsy center administrator
Technologist (4)	Resident
Care manager	Epilepsy helpline provider
Social services case manager	Pharmaceutical representative
Social worker	No description provided (3)

PWE, people with epilepsy; HCP, healthcare provider.

Figure 2 summarizes HCP perceptions of factors affecting care for PWE. 32 free-text responses were submitted under “other” causes of seizure medication access issues. Controlled substance regulations (11) were the most frequently cited issue, followed by limited ASM stock (7). Detailed data are provided in Supplementary Figure S2.

Figure 2.

HCP Frequency of Access Concerns 228 × 165 mm (96 × 96 DPI). HCP, healthcare provider.

Overall, 231 HCP (95.1%) reported that access to ASMs was a problem, with 155 (63.8%) identifying it as a major concern. Additionally, 133 respondents (54.7%) reported being asked at least once by an insurance company to consider medication inappropriate for the patient (Supplementary Figure S3). Regarding sequelae of medication access issues limited to the past year, HCPs reported seizures (217, 89.3%), emergency room (ER) visits (191, 78.6%), unplanned clinic visits (134, 55.1%), urgent care visits (70, 28.8%), injuries (75, 30.9%), and deaths (8, 3.3%). 26 (10.7%) of HCPs were aware of a medication access issue ever leading to death of their patient. Finally, HCPs were invited to provide additional comments at survey completion. 52 (21%) submitted a total of 80 comments. The most common issues included insurance challenges (25), pharmacy distribution considerations (14), and administrative burdens (12), with selected responses in Supplementary Table S4.

Comparative Themes—Shared Concerns and Differing Priorities

Medication access was widely recognized as a significant concern among PWE, caregivers, and HCP, with common consequences including seizures, emergency healthcare utilization, and injuries due to not getting medication on time.

The experience of PWE and caregivers differed notably. Many caregivers were caring for children with epilepsy (70, 52.2%) and tended to care for individuals taking multiple daily ASMs. This difference likely accounts for caregivers reporting higher rates of difficulties across most barriers, except transportation. Caregivers also appeared to employ more compensatory strategies, as evidenced by their higher rate of reporting “no change” necessary compared to PWE.

HCPs cited insurance and cost as the most frequent barriers, though cost did not emerge as a top concern for PWE or caregivers. HCPs also reported concern about medication availability (eg, “out of stock/not available” or “too soon to fill”) and provider-related issues, but these were less frequently noted by PWE and caregivers, suggesting a relative lack of awareness for the frequency of these issues.

Discussion

Timely access to medication is a necessity and the most basic building block for medication adherence. However, multiple barriers limit PWE's ability to obtain medication promptly. These survey results provide insights into underlying barriers and resulting consequences.

65% of PWE and 72% of caregivers reported difficulty filling ASM prescriptions, resulting in negative financial consequences, stress, and seizures. Emergency medication use, injuries, and hospitalizations were also commonly reported. Nearly all HCP surveyed recognized medication access as a significant issue for PWE.

Medication Access Barriers

One notable finding, which has not been extensively evaluated in previous research, is the frequency of the “too soon to refill” message limiting medication access. This message was reported by 37% of PWE, 39% of caregivers, and 44% of HCP. Refills may be restricted due to legal, pharmacy, or insurance regulations. Many ASMs are categorized by the Drug Enforcement Administration (DEA) as Schedule III, IV, or V controlled substances, imposing limits on dispensed quantities and refill timing (often 2 days or less), which can vary by state and pharmacy. For daily medications, there is a narrow window of time between prescription filling and pick up before a dose is missed, and early refills for lost/damaged medication or travel may be denied. Newer and branded ASMs, which are often more expensive and less commonly stocked by pharmacies, may be particularly affected by these regulations, leading to delays in obtaining medication. Additionally, Schedule III and IV prescription transfers between pharmacies are permitted once. While this is an improvement passed by the DEA in 2023,¹⁸ it is insufficient to address issues of medication access given current pharmacy stocking practices. When faced with these constraints, PWE may run out of medication, or need to search for alternative pharmacies, which can be difficult due to limited transportation, particularly in rural areas. These logistical challenges further burden HCPs who often must send prescriptions to the alternate pharmacy. DEA scheduling has been recognized by others as a significant barrier,¹³ and de-scheduling, as done with fenfluramine and cannabidiol, could improve access, though concerns about abuse potential for some ASMs remains.¹⁹

Cost was another significant barrier, with 20% of the PWE and 22% of caregivers reporting difficulty due to out-of-pocket expenses. Cost was also recognized by 57% of HCPs as a frequent barrier and is considered a primary obstacle to medication access globally.²⁰ High drug costs are not unique to epilepsy²¹ and are a significant challenge in the current healthcare system. As newer medications tend to be more expensive, the pipeline of new drug approvals for epilepsy leads to cost challenges, including insurance coverage, need for prior authorizations (with greater paperwork burden to providers, delays, and system expense),²² and higher out-of-pocket costs. The National Health Interview Survey, an annual health survey of US households that included epilepsy questions in 2015 and 2017, identified that excessive out-of-pocket medication costs can lead PWE to obtain and take less medication than prescribed, delay care and have difficulty paying bills compared to those without epilepsy.¹² In our study, 23% of PWE and 43% of caregivers reported delays due to lack of insurance coverage, with insurance identified by HCPs as the most frequent barrier to timely medication access. These findings underscore the role of insurance design and coverage limitations as structural drivers of nonadherence. Interestingly, a U.S. study of nearly 11,000 adults with epilepsy examining long-term costs of care found that ASM nonadherence was associated with higher overall healthcare costs, despite savings from reduced prescription drug spending.¹¹ Greater examination of the costs of nonadherence may help establish common ground for meaningful insurance policy reform.

Effects of Barriers

Seizures, increased healthcare utilization, and even death are possible sequelae from missed doses. In our survey, PWE reported experiencing seizures (27%) and ER visits (8%) after a missed dose(s). A postal survey of 661 PWE found similar results: 45% with missed doses reported consequent seizures²³ and another study associated a medication possession ratio of <0.8 with 21% higher risk of seizure.²⁴ The RANSOM study, a retrospective open-cohort analysis of Medicaid claims data, found a threefold increased mortality in those with nonadherence, with non-adherent time periods associated with significantly higher incidence of ER visits, hospitalizations, injuries from motor vehicle accidents, and fractures.¹⁰ Another claim-based study found similar findings with ASM nonadherence associated with an increased likelihood of hospitalization and ER admission.¹¹ Seizures can lead to death, and our HCP survey disturbingly revealed that over 10% reported at least one patient death from a medication access issue.

The negative impact of seizures on quality of life is well-documented and can be “immediate and devastating.”²⁵ Accordingly, 25% of caregivers reported emotional or other stress due to difficulties filling medication. Our findings align with previous research²⁶ showing that non-drivers are more likely to report transportation as a barrier to obtaining medication. A 1997 survey of people with moderately severe epilepsy identified driving, independence, and employment as the most important concerns,²⁷ noting that a single seizure can lead to loss of driving privileges. Access to medication is therefore critical in maximizing the quality of life for PWE.

Limitations

Our surveys have several limitations. First, there is inherent self-selection bias in survey participants, potentially motivated by frustrations. Likewise, the caregivers surveyed managed more daily medications than average epilepsy populations. Both could have resulted in a higher frequency of reported barriers.

However, the distribution lists targeted audiences that were connected to epilepsy support networks, which can provide guidance on navigating through these barriers, potentially making these an under-reporting of true difficulties. In addition, web-based surveys are more likely to be completed by those with higher education, internet access, and computer skills, and our surveys did not have a paper option to reach those without access. Similarly, the surveys were not provided in any languages other than English, limiting completion to those with English proficiency or access to translation. For these reasons, our results may underestimate barriers, as education, support networks, and electronic resources can be invaluable to overcome medication access issues.

Many survey participants chose not to provide demographic characteristics, limiting characterization of our responders. Most HCP responses were from epileptologists, which may not reflect primary care or general neurology experience. Overall low response rates to the surveys suggest possible non-response bias.

Finally, these surveys clarified the difficulty of getting medications filled on time but did not evaluate the challenges of establishing care, medication understanding, remembering to take medication, side effects, and comorbid conditions that are also critical elements in epilepsy treatment.

Despite these limitations, the surveys reflect the barriers encountered in the populations sampled, are consistent with other studies, and clearly demonstrate evidence of systemic burden and need for change.

Next Steps

Missed medication doses have far reaching consequences, including death. Obtaining medication on time must be a priority for insurers, pharmacies, governing bodies, HCPs, and the epilepsy community. The following position statement was created by the AES Medication Access Workgroup to highlight these critical concerns and present a framework for positive change.

American Epilepsy Society Position Statement

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

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

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

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

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

Research:

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

Conclusions

Medication access barriers are widespread and significant per PWE, caregivers, and HCP. Survey findings demonstrate need for action to reduce modifiable barriers and risks. Even with established care, medication is not always obtained promptly to prevent missed doses. Obtaining medication is a crucial step for medication adherence and relies on a multitude of factors, many beyond the patient's or provider's control. Missed medication increases the cost of care and burdens HCP staff. Action plans, advocacy, education, and awareness are critical to reducing complications related to missed doses. Further research is needed to clarify the most effective strategies to reduce missed medications. There is an urgent and critical need to implement systemic changes before another person with epilepsy dies unnecessarily.

Supplemental Material

sj-docx-1-epi-10.1177_15357597261435471 - Supplemental material for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Supplemental material, sj-docx-1-epi-10.1177_15357597261435471 for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access by Marjorie E. Bunch, Jessica Falco-Walter and Sasha Alick-Lindstrom, Abrar O. Al-Faraj, Brandy E. Fureman, James Herbst, Lisa C. Garrity, Shilpa Klocke, Alain Lekoubou, Lara V. Marcuse, Lauren Orciuoli in Epilepsy Currents

Supplemental Material

sj-docx-2-epi-10.1177_15357597261435471 - Supplemental material for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Supplemental material, sj-docx-2-epi-10.1177_15357597261435471 for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access by Marjorie E. Bunch, Jessica Falco-Walter and Sasha Alick-Lindstrom, Abrar O. Al-Faraj, Brandy E. Fureman, James Herbst, Lisa C. Garrity, Shilpa Klocke, Alain Lekoubou, Lara V. Marcuse, Lauren Orciuoli in Epilepsy Currents

Supplemental Material

sj-docx-3-epi-10.1177_15357597261435471 - Supplemental material for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Supplemental material, sj-docx-3-epi-10.1177_15357597261435471 for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access by Marjorie E. Bunch, Jessica Falco-Walter and Sasha Alick-Lindstrom, Abrar O. Al-Faraj, Brandy E. Fureman, James Herbst, Lisa C. Garrity, Shilpa Klocke, Alain Lekoubou, Lara V. Marcuse, Lauren Orciuoli in Epilepsy Currents

Supplemental Material

sj-docx-4-epi-10.1177_15357597261435471 - Supplemental material for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Supplemental material, sj-docx-4-epi-10.1177_15357597261435471 for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access by Marjorie E. Bunch, Jessica Falco-Walter and Sasha Alick-Lindstrom, Abrar O. Al-Faraj, Brandy E. Fureman, James Herbst, Lisa C. Garrity, Shilpa Klocke, Alain Lekoubou, Lara V. Marcuse, Lauren Orciuoli in Epilepsy Currents

Supplemental Material

sj-pdf-5-epi-10.1177_15357597261435471 - Supplemental material for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access

Supplemental material, sj-pdf-5-epi-10.1177_15357597261435471 for On Time Saves Lives: Survey Insights and Position Statement from the American Epilepsy Society on Barriers to Antiseizure Medication Access by Marjorie E. Bunch, Jessica Falco-Walter and Sasha Alick-Lindstrom, Abrar O. Al-Faraj, Brandy E. Fureman, James Herbst, Lisa C. Garrity, Shilpa Klocke, Alain Lekoubou, Lara V. Marcuse, Lauren Orciuoli in Epilepsy Currents

Footnotes

Acknowledgments

The authors would like to acknowledge the American Epilepsy Society, with workgroup formation supported by the Treatments Committee led by John Stern, MD, MA, FAES with initial collaboration facilitated by former AES employee Joy Keller, MS, RD, MSLIS. Additional acknowledgement and appreciation to Shawna Strickland, PhD, CAE, RRT, FAARC for subject matter expertise on survey development.

Appreciation goes to the respondents for taking the time to complete the surveys, as well as the institutions that assisted with survey distribution, including the American Epilepsy Society, American Academy of Neurology, Epilepsy Foundation, Epilepsy Leadership Council, and Rare Epilepsy Network. The authors also express appreciation for statistical analysis provided by Paul J. Feustel, PhD.

Author Contributions

All authors reviewed and approved the final manuscript. MEB was responsible for the study conception and survey creation, first draft manuscript, data analysis and processing, and revision and editing. JFW and SAL assisted in survey creation, data analysis and processing, manuscript preparation, and revision and editing. AOAF and BEF assisted with manuscript preparation, data analysis and processing, and revision and editing. JH, LCG, SK, AL, and LO assisted in study conception, survey creation, manuscript preparation, data analysis and processing, and revision and editing. LVM assisted in study conception, survey creation, and manuscript revision and editing.

Disclosure & Ethical Statement

No pharmaceutical company contributed to or reviewed this manuscript in any stage of development. Dr Fureman is the owner and principal of Neuroscience Navigators, LLC. No other authors have any disclosures relevant to this manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material

Supplemental material for this article is available online.

ORCID iDs

Marjorie E. Bunch

Jessica Falco-Walter

Sasha Alick-Lindstrom

Abrar O. Al-Faraj

Brandy E. Fureman

Lisa C. Garrity

Shilpa Klocke

Alain Lekoubou

Lara V. Marcuse

References

Epilepsy - WHO Fact Sheet. Updated 2/7/2024. Accessed 6/18/2025, https://www.who.int/news-room/fact-sheets/detail/epilepsy.

Fiest

Sauro

Wiebe

, et al. Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology. 2017;88(3):296–303. doi:10.1212/WNL.0000000000003509

Zack

Kobau

. National and state estimates of the numbers of adults and children with active epilepsy - United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66(31):821–825. doi:10.15585/mmwr.mm6631a1

Duncan

Sander

Sisodiya

Walker

. Adult epilepsy. Lancet. 2006;367(9516):1087–1100. doi:10.1016/S0140-6736(06)68477-8

Kanner

Bicchi

. Antiseizure medications for adults with epilepsy: A review. JAMA. 2022;327(13):1269–1281. doi:10.1001/jama.2022.3880

Walsh

. Coroner: Man suffered fatal fall after receiving IOU for epilepsy drug. Pharmacy Magazine: Communications International Group Ltd 2025.

Samsonsen

Reimers

Brathen

Helde

Brodtkorb

. Nonadherence to treatment causing acute hospitalizations in people with epilepsy: An observational, prospective study. Epilepsia. 2014;55(11):e125–e128. doi:10.1111/epi.12801

Donahue

Akram

Brooks

, et al. as the Epilepsy Learning Healthcare S. Barriers to medication adherence in people living with epilepsy. Neurol Clin Pract. 2025;15(1):e200403. doi:10.1212/CPJ.0000000000200403

Malek

Heath

Greene

. A review of medication adherence in people with epilepsy. Acta Neurol Scand. 2017;135(5):507–515. doi:10.1111/ane.12703

10.

Faught

Duh

Weiner

Guerin

Cunnington

. Nonadherence to antiepileptic drugs and increased mortality: Findings from the RANSOM study. Neurology. 2008;71(20):1572–1578. doi:10.1212/01.wnl.0000319693.10338.b9

11.

Davis

Candrilli

Edin

. Prevalence and cost of nonadherence with antiepileptic drugs in an adult managed care population. Epilepsia. 2008;49(3):446–454. doi:10.1111/j.1528-1167.2007.01414.x

12.

Tian

Kobau

Zack

Greenlund

. 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. 2022;71(21):697–702. doi:10.15585/mmwr.mm7121a1

13.

Ernst

. Drug Enforcement Administration scheduling negatively impacts patients with epilepsy: A call to action. Epilepsia. 2025;66(9):3578–3580. doi:10.1111/epi.18546

14.

Javarayee

Meylor

Shahrukh

, et al. US Generic antiseizure medication supply chain: Observations from analysis of US government databases. Seizure. 2024;117(April):83–89. doi:10.1016/j.seizure.2024.02.003

15.

Harris

Taylor

Minor

, et al. The REDCap consortium: Building an international community of software platform partners. J Biomed Inform. 2019;95(July):103208. doi:10.1016/j.jbi.2019.103208

16.

Harris

Taylor

Thielke

Payne

Gonzalez

Conde

. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–381. doi:10.1016/j.jbi.2008.08.010

17.

Gotlieb

Lally

Blank

Jette

. Geographic heterogeneity in epilepsy specialist distribution. Neurology. 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

Gidal

. When adverse effects are seen as desirable: Abuse potential of the newer generation antiepileptic drugs. Epilepsy Behav. 2017;77(December):62–72. doi:10.1016/j.yebeh.2017.10.007

20.

Pironi

Ciccone

Beghi

, et al. Treatment ITFoAt. Survey on the worldwide availability and affordability of antiseizure medications: Report of the ILAE task force on access to treatment. Epilepsia. 2022;63(2):335–351. doi:10.1111/epi.17155

21.

Smith

. Looming crisis of financial toxicity in neurologic drug pricing: From out-of-pocket to out-of-community costs. Neurology. 2023;100(9):401–402. doi:10.1212/WNL.0000000000201725

22.

Gotlieb

Joseph

Blank

Jette

. Barriers and consequences of prior authorization for neurologic medications: A scoping review. JAMA Neurol. 2025;105(6):e214035(1)–e214035(6). doi:10.1001/jamaneurol.2025.4560

23.

Cramer

Glassman

Rienzi

. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338–342. doi:10.1016/s1525-5050(02)00037-9

24.

Manjunath

Davis

Candrilli

Ettinger

. Association of antiepileptic drug nonadherence with risk of seizures in adults with epilepsy. Epilepsy Behav. 2009;14(2):372–378. doi:10.1016/j.yebeh.2008.12.006

25.

Eatock

Baker

. Managing patient adherence and quality of life in epilepsy. Neuropsychiatr Dis Treat. 2007;3(1):117–131. doi:10.2147/nedt.2007.3.1.117

26.

Welty

Willis

Welty

. Effect of limited transportation on medication adherence in patients with epilepsy. J Am Pharm Assoc (2003). 2010;50(6):698–703. doi:10.1331/JAPhA.2010.09081

27.

Gilliam

Kuzniecky

Faught

Black

Carpenter

Schrodt

. Patient-validated content of epilepsy-specific quality-of-life measurement. Epilepsia. 1997;38(2):233–236. doi:10.1111/j.1528-1157.1997.tb01102.x

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