A very important petition was started today on the website, Change.org, by families of victims of Primary Amoebic Meningoencephalitis (PAM), calling on federal and state public health leaders to add PAM to the National Notifiable Diseases Surveillance System making reporting of this parasitic disease mandatory at the national level.

The petition was initiated by Dr. Sandra Gompf, who her and her husband, Timothy, also a physician, lost their son Philip in 2009.

petitionThe petition is directed to Kristy Bradley, DVM, MPH, ACVPM, with the Council of State and Territorial Epidemiologists (CTSE), Thomas Frieden, MD, MPH, Director, Centers for Disease Control and Prevention (CDC), John Armstrong, MD, FACS, FL State Surgeon General and Janet Hamilton, MPH with the Surveillance Section at the FL Dept of Health.

Naegleria fowleri is a free-living amoeba found in fresh water bodies that when contracted is 99% fatal even with treatment. It is often called “rare”; however, because it’s not a mandatory nationally notifiable disease, the true incidence is not known.

Dr. Gompf make several key points in the petition, here’s an example of a few:

  • What is the national incidence of PAM? We don’t know. CDC now depends on individual state health departments to report voluntarily. State health departments have lists of mandatory reportable conditions, however, most states do not include PAM because it is “rare”.
  • She also notes that with mandatory reporting, clinical laboratories would be encouraged to keep rapid diagnostic kits on-hand for STAT testing.
  • Gompf also says that mandatory reporting at the national level would prioritize post-mortem examination and tissue diagnosis of PAM.

LISTEN: Amoeba awareness: Naegleria fowleri , an interview with Dr. Sandra Gompf

If you want to make a statement on this issue and let the people at the top of the public health system in the United States know how you feel, go to the petition and sign it today!

Robert Herriman is a microbiologist and theEditor-in-Chief of Outbreak News Today

Follow @bactiman63

brain eating amoeba
Naegleria fowleri