(P208) ADVOCACY WORKS! HERPES CURE ADVOCACY CHANGES FEDERAL RESPONSE

Background:
Herpes simplex viruses 1 and 2 impact over 200 million and 18 million Americans, respectively.  Genital herpes increases the spread and acquisition of HIV and causes health complications and death in newborns. Yet, national epidemic control strategies for herpes are lacking.

Methods:
In 2021, activists addressed gaps in herpes programs and contacted federal sexually transmitted infection prevention and research leaders across the Department of Health and Human Services (DHHS). They also engaged elected federal officials on the appropriations and health committees.  Using meetings, education, and persistence, activists identified critical areas where officials could make policy changes. By 2022, a non-profit 501(3)c organization called Herpes Cure Advocacy (HCA) was formed, as well as a medical advisory group that informs the board and members of strategies and updates in research.

Results:
As a direct result of HCA’s influence, the government’s 1) FY21 and 2) FY22 budgets included guidance requiring the DHHS agencies to assess current herpes activities and develop a national strategy for herpes and $250,000 in funding for strategy development, 3) in November 2022, the National Institutes of Health (NIH) convened a 2-day workshop on cure, vaccine, and treatment research, 4) In 2023, the NIH subsequently released a 5-year research strategy, 5) In December 2023, based upon clinical and laboratory data provided by HCA,) the Food and Drug Administration issued a safety communication about the poor performance of herpes simplex virus antibody tests, 6) the Office of the Assistant Secretary of Health released a draft addendum to the National STI Strategy in February 2024 addressing herpes and 7) HCA prompted the CDC to undertake efforts to evaluate the burden of neonatal herpes and consider making it a nationally notifiable condition.

Conclusion:
Advocacy works and requires experienced leadership, persistence, and highly dedicated activists. Silent no more.