In May 2016, the Milken Institute Center for Strategic Philanthropy convened epilepsy experts to discuss the state of science relevant to epilepsy and the challenges currently impeding progress toward improved therapeutics and care. The goal of the retreat was to identify high-impact, actionable solutions where strategic philanthropic investment could accelerate progress in the epilepsy space. The experts prioritized the following as top challenges in epilepsy:
1. Inadequate precision healthcare infrastructure:
Precision healthcare accounts for the individual’s biological makeup and unique clinical manifestations when tailoring a course of treatment. In epilepsy, it is often unclear which of the many available therapies will have the greatest efficacy and lowest risk for adverse effects in an individual patient. This is because researchers and clinicians do not have a clear understanding of who comprises the different epilepsy subpopulations, what factors make these different populations unique, and which currently available treatments are ideal for each specific epilepsy subtype.
2. Inefficient process for bringing new therapies to market:
Given the high cost of clinical trials and competing priorities, industry is generally wary of pursuing new epilepsy medications because the chances of discovering a superior anti-seizure drug are low. Therefore, opportunities to lower the barriers to conducting clinical trials would encourage industry to invest in new epilepsy drug discovery and development.
3. Limited resources and collaborations between preclinical and clinical researchers:
Regardless of the type of preclinical epilepsy research being analyzed, it must translate to clinically meaningful information in order to benefit patients. The challenge here is that basic scientists and clinicians often have limited interaction and work in siloes, which creates a misalignment of priorities between these two communities and hinders effective translation of preclinical research.
4. Lack of cohesive care that addresses epilepsy associated conditions:
Seizures are one symptom of epilepsy. Other associated conditions include intellectual disabilities, mood disorders, and sleep disorders. Epilepsy centers are accredited centers with coordinated teams that provide high-quality comprehensive care to epilepsy patients. These care teams consist of various specialists such as epileptologists, neurologists, neurosurgeons, neuroradiologists, genetic counselors, psychologists, psychiatrists, social workers, and dieticians. Epilepsy centers specialize in defining epilepsy subtype, which facilitates the selection of the most efficacious treatment plan. Moreover, epilepsy centers provide patients with the opportunity to participate in novel clinical trials. Because of all of these advantages, it is recommended practice to refer a patient who has failed two or more anti-seizure medications to an epilepsy center.
Download the full PDF below.