CDC, CSTE: Add Amoebic Meningoencephalitis to the National Notifiable Disease Surveillance System List!

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CDC, CSTE: Add Amoebic Meningoencephalitis to the National Notifiable Disease Surveillance System List!

This petition had 5,213 supporters
Petition to
Executive Director, Council of State and Territorial Epidemiologists Jeff Engle, MD (Executive Director, Council of State and Territorial Epidemiologists) and

Why this petition matters

Started by Sandra Gompf, MD

We, the families of victims of Amoebic Meningoencephalitis (AM) once more insist that these infections be added to the National Notifiable Diseases Surveillance System. Our petition spells out the exact reasons for this request. We ask that you pay close attention to this issue and do not delay another several years before consideration of this request. The time is now and you have the power to save lives by doing this. It WILL increase awareness, testing efficacy, and treatment plans for those effected. You must make a statement on this issue! 

Signed: Swim Above Water, Courtney Nash Amoeba Awareness Foundation, IncKyle Lewis Amoeba Awareness Foundation, Jordan Smelski Foundation for Amoeba AwarenessTeam Koral Reef Amoeba Awareness, The Leland Shoemake Foundation, Michael J. Riley Jr. Foundation for Amoeba Research and Awareness, (a project of the USF Foundation Philip T. Gompf Memorial Fund for Infectious Diseases)

Sandra Gompf, MD, Infectious Disease specialist and mother of a victim of Naegleria fowleri meningitis:  Amoebic Meningoencephalitis (AM), contracted when a person comes in contact with a free-living amoeba (Naegleria fowleri, Balamuthia mandrillaris, Sappinia species), and is 99% fatal even with treatment has not been added as a Nationally Notifiable Disease in the United States. We believe it should. 

The true incidence of Primary Amoebic Meningo-encephalitis (Naegleria fowleri; PAM) and Giant Granulomatous Encephalitis (Balamuthia mandrillaris, Acanthamoeba, Sappinia; GAE) is not known, because of 3 key problems. It’s not mandatory to report to health departments in most states, it’s difficult to diagnose before death, most physicians aren't aware of it, and death certificates are often based on a doctor’s “best guess”.

Because Amoebic Meningoenchephalitis is not on the National Notifiable Diseases Surveillance list, the CDC cannot effectively report the national incidence of this disease its causative parasites. National Notifiable Disease status can encourage reporting by the states. Surveillance and public health awareness education is improved by giving these diseases high priority, especially when the disease is as easy to prevent or as severe, as PAM. CDC depends on individual state health departments to report diseases voluntarily. State health departments have lists of mandatory reportable conditions. Most states do not include amoebic meningoencephalitis because it is “rare”. Florida and Texas do include PAM on the state lists, but Florida did not begin mandatory reporting until 2008. Changing climate is changing the range and incidence of many infectious pathogens in recent years, including malaria, dengue, and others. Naegleria fowleri is a heat-loving parasite that has expanded its range with upward trending temperatures. Incidence is known to rise with heat waves, and AM has been reported in Virginia and Kansas. The 2012 report of the Minnesota Department of Health describes the first case of PAM occurring over 500 miles North of its previous northernmost lattitude; the same isolate of N. fowleri was isolated from a specimen of the patient’s brain and from water and sediment samples where the patient had been exposed. Moreover, rising temperatures and expanding populations mean more Americans seeking relief at local lakes, rivers and reservoirs, with children and young people at highest risk. The incidence of Balamuthia mandrillaris in the Western U.S. may be expected to rise as well.

National Notifiable Disease status motivates physicians to educate themselves,  to diagnose and report, and can support laboratory budgets to improve access to rapid diagnostic tools. Rapid diagnostic tools for AM are not widely available. Most laboratories are under-resourced and asked to do more testing with less every day. Diagnostic tests for rare conditions are often costly and low priority, and are often referred to outside reference labs as “send-outs”. Because they are ordered in low volume, it costs more to “outsource” the test. Results take days, which lowers the usefulness of the test and makes it less likely to be ordered by clinicians, and even less likely for smaller labs to offer the test at all. Right now, the usual diagnostic tests for acute meningitis focus on looking for inflammation and bacteria, which is common and deadly, so a bacterial Gram stain of spinal fluid is common. But a Gram stain does not pick up amoebae. Spinal fluid findings in PAM are identical to commoner bacterial meningitis. Further diagnoses are often not considered even if no bacteria are seen on the Gram stain, and the patient will be treated aggressively, and futilely, for bacterial or even viral meningitis. Further, finding amoebae under the microscope requires freshly obtained spinal fluid, rushed to the laboratory still-warm & examined quickly. It requires the time and skill of an experienced microscopist to look for moving amoebae in spinal fluid. Once the patient is failing treatment, the diagnosis, even if considered, is too late to confirm OR treat. For Balamuthia mandrillaris/GAE, which is more chronic, the diagnosis is even more difficult; it must be first considered as a possibility, and then brain biopsy must be performed. 

National Notifiable Disease status may encourage post-mortem examination and tissue diagnosis of PAM and GAE. Most medical mysteries are not diagnosed by the local medical examiner’s (ME’s) office, whose resources are stretched thin handling criminal forensics. Death certificate diagnoses for most medical deaths are made as an “educated guess” by the physician who managed the case in the hospital or the personal physician in the office, who may have little knowledge of the events of the hospitalization. It may even be a resident in training. Most of the time, the educated guess is quite accurate, but in the case of death from an unusually severe “bacterial” meningitis, it may be wrong & never investigated. If the death occurred very rapidly, within 24 hours, the ME examination is usually mandated. But if it’s later than that, it is then the hospital’s or family’s option to request a paid autopsy, and most families decline this procedure on a loved one's remains, especially if they feel it would not make a difference. Private health insurance, Medicare, and Medicaid do not pay for autopsy examinations. A private autopsy typically costs $2,000-5,000.

Not surprisingly, autopsies are almost never done anymore in this country, which is a terrible loss for the grieving who lack answers, and the healthcare professionals whose skills and humility were once honed by their Silent Teachers.

National Notifiable Disease status can encourage research and development of effective drug treatments. Not enough is known about pathogenic free living amoebae, especially if host factors may increase certain people's risk. Current regimens of multiple drugs have historically been ineffective, and even with miltefosine provided by CDC as an investigational new drug, have had limited effect and only if given within 12-24 hours of onset of headache. GAE, if diagnosed, responds poorly to current treatments. PAM usually kills within 3-4 days; my beautiful, kind, and intelligent son was brain-dead in 3. 

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