Key Stakeholders for Herpes Patient Advocacy

USE YOUR VOICE FOR CHANGE

How long until a herpes cure?

When asking this question – ask yourself, what can I do to help? Want to know when the next clinical trial for a herpes cure is? Contact your elected representatives – tell them we need more clinical research for HSV.

Contact your elected representatives to ask them to prioritize Herpes cure, treatment and prevention. Especially important stakeholders in congress are on the committees 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

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? Herpes spreads in America without public health intervention. 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


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