In the realm of volunteer-driven advocacy, the Herpes Cure Research group has emerged as a powerful force dedicated to advancing the field of herpes simplex virus (HSV) research. Beginning on Reddit and expanding rapidly to Facebook, this group has brought together over 20,000 passionate members from around the world, all united in their mission to make a difference.
The primary goal of the Herpes Cure Research group is to promote research and drive progress in the field of HSV, focusing on better testing mechanisms, integration of HSV into standard STI panels, development of treatments to eliminate transmission, and ultimately the delivery of a vaccine and a cure.
The group has achieved significant milestones in its relatively short existence. Collaborating with esteemed institutions like the Fred Hutch Center and Penn Medicine, they have raised substantial funds for vital research initiatives. Notably, the group has raised over $650,000 (£534,000) for gene therapy treatment research at the Fred Hutch Center led by Dr Keith Jerome, and an additional $360,000 (£296,000) for prophylactic and therapeutic vaccine research at Penn Medicine, under the guidance of Dr Harvey Friedman.
In an impressive display of advocacy prowess, the Herpes Cure Research group successfully lobbied the Senate and Congress to address HSV directly in the Appropriations Bill for 2022. This achievement underscores the group’s dedication to influencing policy and securing necessary funding for herpes research and awareness.
Looking ahead, the group remains steadfast in its objectives. They advocate for a more proactive approach to HSV testing, challenging existing guidelines that recommend against testing in the absence of symptoms. Their belief is that an inclusive approach to testing is essential, enabling individuals to protect their loved ones and reduce transmission effectively.
The group passionately pushes for HSV to be included in standard STI panels, recognising that this shift can significantly impact public health by providing comprehensive insights into the prevalence of the virus and paving the way for better preventive strategies. The group also highlights the disproportional impact of HSV on women and underrepresented groups, underscoring the urgent need for a universal ‘Undetectable = Untransmittable’ (U=U) campaign for HSV.
Such a campaign could mirror the success achieved in HIV prevention, ultimately reducing the burden of both HSV and HIV infections. As research shows, 30% of new HIV acquisitions are attributed to an HSV2 infection and advances in HSV could have huge positive impact to reduce HIV rates simultaneously.
The Herpes Cure Research group remains dedicated to their long-term objectives of developing a vaccine and a cure. Through collaboration, fundraising, advocacy, and a steadfast belief in the power of research, they continue their essential work to improve the lives of those affected by HSV and strive for a world free of its impact.
