Last year, the Secretary of Health and Human Services (HHS) appointed UCB’s Kristi Lengyel, Director of U.S. Patient Advocacy, to the National Institutes of Health (NIH) Task Force on Research Specific to Pregnant and Lactating Women (PRGLAC). 

Established by the 21^st Century Cures Act, the task force’s goal is to prepare a report for Secretary Azar and other committees of Congress to advise on gaps in knowledge and research on safe and effective therapies for women who are pregnant or lactating. The PRGLAC task force (read more in this December article by STAT News) is dedicated to uncovering actionable solutions to the current guessing game many women face when deciding to stay on treatment for chronic illness during pregnancy or lactation. 

UCB commends NIH on their efforts to bring about change to close information gaps to benefit women and their families. Lengyel, on behalf of UCB, has been a contributing member to the task force and has had the opportunity to present the biopharmaceutical industry’s perspective. In February, she shared a framework for effective communications with providers and the public based on UCB research showing the most frequent sources of information sought by these audiences when researching treatment knowledge gaps. These findings show that pregnant/lactating women more often sought advice from social media, communities, and advocacy groups; in contrast, providers often looked to peers/key opinion leaders, clinical guidelines, and insurers.

The PRGLAC task force will be soon submitting their report to Secretary Azar and Congress. Since 2012, UCB has been specifically engaged with vulnerable populations that include pregnant and lactating women, leading initiatives focused on Family Planning and Pregnancy for women living with immunological diseases to help identify and address knowledge gaps around diseases such as chronic rheumatic diseases, Crohn’s disease and Systemic Lupus Erythematosus. UCB is committed to continuing to work with the provider and patient communities to ensure the recommendations from the report are put into action.