New HSV Advocates: A Starters Guide to Activism

Hello Herpes Advocates, We’re happy you’re here. We believe part of the reason there have been no advances in treatment or prevention in 40 years is due to stigma and lack of activism. There has never been a centralized advocacy effort for HSV until now.

Getting started with Herpes Advocacy

Step 1: Know the facts so you can speak to them in your advocacy.

Step 2: Sign up for Herpes Cure Advocacy Monthly Meeting

Step 3: Stay informed on the latest research news and advocacy updates. Sign up for Herpes Cure Advocacy news! You can view and participate in archived advocacy alerts by clicking here.

Step 4: Want to do more? Apply to be a volunteer. Have ideas? Email us.

Contact your elected representatives

Next, most important: Contact your elected representatives to ask them to prioritize Herpes cure, treatment and prevention. Especially important targets for HSV Advocacy are listed below.

A sample letter/email is here.

US SenateUS House of Representatives
Senate Appropriations Committee
Senate LHHS Subcommittee
Senate HELP Committee
House Appropriations Committee
House LHHS Subcommittee

Contact Other Stakeholders:

United States Preventative Services Task Force (USPTSF)

Why advocacy at USPSF? USPSTF establishes guidelines for medical screening in the United States. They currently recommend against screening for HSV. Learn more about them here.

Dr. Karina W. Davidson USPSTF Committee
General Info
Dr. Amanda Borsky
Dissemination and Implementation Advisor
Agency for Healthcare and Research Quality

CDC: Department for Prevention of Sexually Transmitted Diseases

Why advocacy at CDC? The Center for Disease Control and prevention is responsible for prevention, surveillance, and establishes guidelines for testing and treatment for HSV in the United States. They currently recommend against screening for HSV. New STI treatment guidelines for HSV were published in 2021. Learn more about the CDC and their work here.

  • Increase prevention efforts, outline a clear strategy to reduce transmission for HSV in the United States
  • Increase training for new STI Treatment guidelines so that more people get tested (mild symptoms qualify someone for testing!)
  • There is a critical public health need for a functional, accurate, diagnostic test to diagnose asymptomatic infection
Dr. Jono Mermin
Director of the National Center for HIV, Viral Hepatitis, STD, and TB Prevention (NCHHSTP)
Dr.  Leandro Mena, MD, MPH                                              
Director, Division of STD Prevention (DSTDP)
Dr. Demetre
Raul Romaguera
Acting Deputy Director (DSTDP)
Dr. Laura Bachmann
Chief Medical Officer, DSTDP
Jennifer Ludovic
Lead Public Health Policy Analyst , CDC
STI Treatment Guidelines

FDA Contacts and Committees

Why advocacy at FDA? The FDA reviews and approves new foods and medical products and provides regulatory oversight for businesses with products on market. The currently FDA-approved serologic antibody tests for diagnosing asymptomatic infection are wrong 50% of the time. Tell the FDA that we need higher standards for diagnostic tests! More background on the need for advocacy at the FDA is here.

More steps you can take on advocacy at the FDA!

Patient Affairs Mailbox
Center for Biologics Evaluation and Research (CBER)
Dr. Himani Bisht
Assistant Director, Division of Microbiology and Devices

NIH: National Institute for Health: NIAID

Why advocacy at NIH? National Institutes of Health is responsible for research and development to bring new medical innovations to market in the United States. They fund both intra-curricular and extracurricular research through a robust grant program.

Dr. Emily Erbelding
Director of the NIAID Division of Microbiology and Infectious Diseases (DMID)
Dr. Barbara Mulach
Director, Office of Scientific Coordination and Program Operations, DMID
Dr. Carolyn Deal
STIs Section Chief
Thomas Hiltke
STIs Section Chief, STI Vaccines and Therapeutics Program Officer
Dr. Jeffrey Cohen
Chief, Laboratory of Infectious Diseases
Chief, Medical Virology Section

Other interest groups
Lynn Barclay
ASHA, Chief Executive Officer
Fred Wyand
ASHA, Communications
Asa Radix
ASHA, Board President
Black Maternal Health Caucus (US Congress)

Get in touch

Have a news tip? Are you working on clinical research for HSV treatments and want to share updates with the public? Let us know!

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2 thoughts on “New HSV Advocates: A Starters Guide to Activism

  1. Necesitamos con urgencia la cura para el herpes tipo I y II y ya que muchas personas nos vemos afectados y deprimidos por la cantidad de brotes q aparecen y que los medicamentos antivirales no alivian las llagas , dolores, hormigueo q producen y lo peor esq nos sentimos desvastados por qué no existe aún cura para esta enfermedad que nadie merece(exigimos cura).


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