Report on Epilepsy in Latin America and the Caribbean

1. Introduction

Epilepsy is a chronic neurological condition that affects over 50million people worldwide. In Latin America and the Caribbean (LAC), the burden of epilepsy is substantial but frequently underreported. This report synthesises epidemiological data, examines healthsystem challenges, and outlines strategies to improve care across the region.

2. Epidemiology and Burden

Recent populationbased studies estimate the overall prevalence of active epilepsy in LAC at 712 per 1000 individuals, with higher rates in rural and lowincome areas. Key findings include:

• Approximately 5million individuals live with active epilepsy in the region.
• Incidence peaks during infancy and older adulthood, reflecting both genetic and acquired causes.
• Comorbidities such as depression, anxiety, and cardiovascular disease are common, increasing overall disabilityadjusted life years (DALYs).

Stigma remains a pervasive issue, often leading to social exclusion, reduced educational opportunities, and lower employment rates.

3. Treatment Gap

The proportion of people with epilepsy who receive appropriate treatmentknown as the treatment gapremains high in LAC. Estimates vary by country, but the average gap lies between 30% and 70%.

Major contributors to the gap include:

• Limited availability of antiseizure medicines (ASMs) in public pharmacies.
• Insufficient numbers of neurologists and trained primarycare providers.
• Economic barriers: outofpocket costs for medication and diagnostic tests.
• Lack of public awareness and persistent cultural misconceptions.

4. HealthSystem Challenges

Health systems across LAC face several obstacles that impede effective epilepsy care:

• Fragmented service delivery: Neurology services are often concentrated in urban tertiary centres, leaving rural populations underserved.
• Poor data collection: Inconsistent surveillance and underreporting hinder policy planning.
• Limited training: Primarycare clinicians receive minimal exposure to seizure management during medical education.
• Regulatory barriers: Complex procurement procedures delay the availability of essential ASMs.

5. Policy Landscape

Several initiatives have been launched to address epilepsy in the region:

• WHO Mental Health Gap Action Programme (mhGAP): Provides evidencebased guidelines for nonspecialist providers.
• PAHOs Healthy Brain strategy: Emphasises integration of neurological diseases into primary health care.
• National epilepsy plans: Countries such as Brazil, Mexico, and Colombia have drafted specific policies targeting medication access, training, and stigma reduction.

Despite these efforts, implementation gaps persist, largely due to limited financing and competing health priorities.

6. Successful Models and Best Practices

Case studies from the region illustrate how targeted interventions can reduce the treatment gap:

• Community health worker (CHW) programmes in Peru: CHWs trained to identify seizures and refer patients to nearest clinics resulted in a 25% increase in diagnosis rates.
• Teleneurology networks in the Caribbean: Remote consultations between island clinics and mainland specialists have shortened diagnostic delays by up to 40%.
• Publicprivate drugpooling in Argentina: Joint procurement lowered ASM costs by 30% and secured steady supply in public hospitals.

7. Recommendations

To close the treatment gap and improve quality of life for people with epilepsy, the following actions are recommended:

1. Strengthen primarycare capacity: Incorporate mhGAP guidelines into routine training and continuing medical education.
2. Ensure consistent ASM supply: Adopt pooled procurement mechanisms and negotiate pricereductions with manufacturers.
3. Enhance surveillance: Implement standardized epilepsy registries linked to national health information systems.
4. Address stigma: Launch culturally tailored awareness campaigns that involve schools, workplaces, and community leaders.
5. Promote research: Support regionwide studies on genetic, infectious, and socioeconomic determinants of epilepsy.
6. Foster regional collaboration: Create a Latin American Epilepsy Network to share best practices, training resources, and policy advocacy.

8. Future Outlook

With sustained political commitment and multisectoral partnerships, the next decade could see a halving of the treatment gap in LAC. Greater integration of epilepsy care into universal health coverage schemes, combined with advances in digital health, offers promising avenues for reaching underserved populations.

Continued monitoring and evaluation of implemented strategies will be vital to ensure that progress is equitable and that no individual with epilepsy is left behind.

9. References

1. World Health Organization. Epilepsy Fact Sheet. 2023.
2. Pan American Health Organization. Healthy Brain Initiative. 2022.
3. Johnson, M. et al. Prevalence of Epilepsy in Rural Brazil. *Lancet Neurology*, 2021.
4. Garca, L. & Prez, R. TeleNeurology in the Caribbean: Outcomes and Challenges. *Neurology Today*, 2022.
5. WHO mhGAP Intervention Guide for Epilepsy. 2020.
6. Rivera, A. et al. Community Health Workers and Epilepsy Detection in Peru. *Global Health Action*, 2023.