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 Chairchair@uspstf.net
kdavidson2@northwell.edu
General Info info@uspstf.net
Dr. Amanda Borsky
Dissemination and Implementation Advisor
Agency for Healthcare and Research Quality
Amanda.borsky@ahrq.hhs.gov

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)
jhm7@cdc.gov
Dr.  Leandro Mena, MD, MPH                                              
Director, Division of STD Prevention (DSTDP)
boe2@cdc.gov
Dr. Demetre Daskalakisyzq5@cdc.gov
Raul Romaguera
Acting Deputy Director (DSTDP)
rar2@cdc.gov
Dr. Laura Bachmann
Chief Medical Officer, DSTDP
frg6@cdc.gov
Jennifer Ludovic
Lead Public Health Policy Analyst , CDC
bmp8@cdc.gov
STI Treatment Guidelines Commentsstdtxguidelines@cdc.gov

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 Patientaffairs@fda.hhs.gov
Center for Biologics Evaluation and Research (CBER) CommitteeCBERAdvisoryCommittees@fda.hhs.gov
Dr. Himani Bisht
Assistant Director, Division of Microbiology and Devices
Himani.Bisht@fda.hhs.gov

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)
emily.erbelding@nih.gov
Dr. Barbara Mulach
Director, Office of Scientific Coordination and Program Operations, DMID
bmulach@niaid.nih.gov
Dr. Carolyn Deal
STIs Section Chief
cdeal@niaid.nih.gov
Thomas Hiltke
STIs Section Chief, STI Vaccines and Therapeutics Program Officer
thiltke@niaid.nih.gov
Dr. Jeffrey Cohen
Chief, Laboratory of Infectious Diseases
Chief, Medical Virology Section
jcohen@niaid.nih.gov

Other interest groups
Lynn Barclay
ASHA, Chief Executive Officer
lynnbarclay@ashasexualhealth.org
Fred Wyand
ASHA, Communications
FreWya@ashasexualhealth.org
Asa Radix
ASHA, Board President
aer2130@columbia.cumc.edu
Adolescents 2030info@adolescents2030.org
Beaumont Foundationcastrucci@debeaumont.org
Black Maternal Health Caucus (US Congress)BlackMaternalHealthCaucus@mail.house.gov

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!

Never miss a thing. Sign up for emails.

Processing…
Success! You're on the list.


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).

    Like

Leave a Reply to Laura Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: