Rare Disease Day Insight: Epilepsy Care Gaps in Pregnancy with UCB’s Andrea Wilkinson — Episode 244

Key Takeaways

• <5% clinical trials enroll pregnant women.
• Epilepsy patients face treatment fears during pregnancy.
• Lack of data hampers informed decision‑making.
• UCB advocates patient‑centered research and policy change.
• Advocacy can improve access and safety for pregnant patients.

Pulse Analysis

Rare disease awareness days often highlight overlooked patient populations, and pregnant women with epilepsy exemplify this blind spot. Despite the high prevalence of seizures during pregnancy, clinical research routinely excludes them, leaving clinicians to rely on extrapolated data. This exclusion stems from ethical concerns, liability fears, and logistical challenges, yet the resulting knowledge vacuum forces physicians and patients into a precarious decision‑making process. Understanding the scale of this omission is the first step toward systemic reform.

Andrea Wilkinson leverages her extensive biotech background to champion patient‑centric solutions at UCB. By developing platform tools, stakeholder roadmaps, and advocacy campaigns, she aims to embed pregnant women’s needs into drug development pipelines. Her work with cross‑functional launch teams at AstraZeneca, Takeda, and Sanofi informs UCB’s strategy to generate real‑world evidence, engage regulatory bodies, and streamline reimbursement pathways. This proactive stance not only addresses immediate care gaps but also positions UCB as a leader in inclusive neurology research.

For the broader industry, the episode signals a shift toward more ethical and commercially viable trial designs. Regulators are increasingly urging sponsors to consider diverse populations, and investors view inclusive data as a risk mitigation factor. Expanding trial enrollment to include pregnant participants can accelerate labeling updates, improve safety profiles, and ultimately expand market share for breakthrough epilepsy therapies. Stakeholders across pharma, advocacy groups, and healthcare systems must collaborate to create frameworks that protect both mother and fetus while advancing scientific knowledge.