“Acute flaccid myelitis (AFM) is not nationally notifiable; CDC relies on clinician recognition and health department reporting of patients under investigation (PUIs) for AFM to learn more about AFM and what causes it.”
But could there be more cases?
The Case for Making AFM Reporting Mandatory
Although AFM isn’t yet a nationally notifiable disease, 120 other diseases are, from Anthrax and Botulism to Vibriosis and Zika virus disease.
Who picks them?
The Council of State and Territorial Epidemiologists.
“Although AFP surveillance is commonly conducted in many countries currently still at risk for ongoing transmission of poliovirus, AFP is not a reportable condition in any U.S. state and routine surveillance and assessment for AFP is not performed. Therefore, understanding the baseline incidence and epidemiology of AFM and its public health impact in the United States is significantly limited.”
Revision to the Standardized Surveillance and Case Definition for Acute Flaccid Myelitis
Acute flaccid paralysis (AFP) isn’t a reportable disease in the United States either.
While many people would like AFM to be added to the the Nationally Notifiable Condition List, the CSTE has instead recommended that we:
- Utilize standard sources (e.g. reporting to a local or state public health department) for case ascertainment for acute flaccid myelitis (AFM), including clinician and laboratory reporting, reporting by hospitals, hospital discharge notes, neurology or infectious disease consult notes, MRI reports and images, outpatient records, and extracts from electronic medical records, etc.
- Utilize standardized criteria for case identification and classification for acute flaccid myelitis (AFM) but do not add AFM to the Nationally Notifiable Condition List . If requested by CDC, jurisdictions (e.g. States and Territories) conducting surveillance according to these methods may submit case information to CDC.
- Report cases as soon as possible and continue surveillance.
- Share data to “measure the burden of acute flaccid myelitis (AFM).”
And the CDC has agreed.
“CDC concurs with this position statement. We look forward to continuing to work with our jurisdictional partners to address this important public health issue. This standardized case definition provides an opportunity to better define the spectrum of illness seen with AFM and to determine baseline rates of AFM in the United States. During review of the position statement, a few minor edits were identified as necessary for clarification, and we are working with the author to make these changes.”
What would be the difference if AFM was added to the Nationally Notifiable Condition List?
For one thing, because the list of reportable conditions varies from state to state, it would provide a uniform case surveillance and case definition.
But we already have that in the CSTE Position Statement on Acute Flaccid Myelitis.
The big issue is that there is no federal law that actually mandates reporting for the diseases on the list! Or even to report them to the CDC.
“Each state has laws requiring certain diseases be reported at the state level, but it is voluntary for states to provide information or notifications to CDC at the federal level.”
CDC on Data Collection and Reporting
It is up to state laws – in each and every state.
“The legal basis for disease reporting is found at the state level, where inconsistent laws may differ in terms of which conditions are reportable and their reporting process.”
Brian Labus on Differences In Disease Reporting: An Analysis Of State Reportable Conditions And Their Relationship To The Nationally Notifiable Conditions List
So even if the Council of State and Territorial Epidemiologists added AFM to the Nationally Notifiable Condition List, you would then need each state to pass a law adding AFM to their lists of notifiable diseases.
“Currently AFM is not a reportable condition in Texas.”
TxDSHS on Acute Flaccid Myelitis
How long would that take?
Zika is on the Nationally Notifiable Condition List, but guess what, like AFM, it isn’t on the reportable condition list in many states…
Want to get more cases of AFM reported to the CDC?
Let’s raise awareness about AFM and educate parents and health professionals to get all cases diagnosed, as they can then get reported to local and state health departments, who will then report them to the CDC.
Making AFM reporting mandatory might sound like a big deal, but will it really make any difference in getting kids diagnosed and treated?
“Ultimately, we would have to decide what the purpose of making something nationally notifiable is. We can investigate it just as well without that designation, and keeping things at the state level (for now) allows a lot more flexibility in how we define and investigate it. It might seem frustrating because it isn’t on the nationally-notifiable list, but that honestly doesn’t matter in terms of how we investigate things.”
Brian Labus, PhD, MPH
Cases still get investigated without being on the Nationally Notifiable Condition List.
Cases still get reported without being on the Nationally Notifiable Condition List.
And that’s good, because adding AFM to the Nationally Notifiable Condition List is not something that would happen overnight.
The CSTE would probably discuss it at their next meeting (next summer), and if approved, it would take effect at the beginning of the new year – January 2020. But then, then CDC has to get approval from the Office of Management and Budget (OMB) to actually get permission to start collecting the data on AFM for the Nationally Notifiable Condition List. All of that likely means that the earliest we would see “national” reporting for AFM would be sometime in 2022.
Does that mean we should jump on it now if it is going to take so long, or should we wait to figure out a definitive cause, and then put that on the Nationally Notifiable Condition List?
Whatever we do, remember that it still wouldn’t be mandated reporting unless each and every state actually passes a law mandating reporting of AFM cases to the CDC. Again, being on the Nationally Notifiable Condition List simply means that states are strongly encouraged to report their cases, as they do now. There are several diseases on the Nationally Notifiable Condition List that states never add to their own notifiable conditions list.
“It is voluntary that notifiable disease cases be reported to CDC by state and territorial jurisdictions (without direct personal identifiers) for nationwide aggregation and monitoring of disease data. Regular, frequent, timely information on individual cases is considered necessary to monitor disease trends, identify populations or geographic areas at high risk, formulate and assess prevention and control strategies, and formulate public health policies. The list of notifiable diseases varies over time and by state. The list of national notifiable diseases is reviewed and modified annually by the CSTE and CDC. Every national notifiable disease is not necessarily reportable in each state. In addition, not every state reportable condition is national notifiable.”
CDC on Data Collection and Reporting
Mostly, folks should understand that simply being on the Nationally Notifiable Condition List may not mean as much as they think it does.
“Although disease and condition reporting is mandated at the state, territory, and local levels by legislation or regulation, state and territory notification to CDC is voluntary. All U.S. state health departments, five territorial health departments, and two local health departments (New York City and District of Columbia) voluntarily notify CDC about national notifiable diseases and conditions that are reportable in their jurisdictions; the data in the case notifications that CDC receives are collected by staff working on reportable disease and condition surveillance systems in local, state, and territorial health departments.”
CDC on Data Collection and Reporting
And that epidemiologists at the local, state, and national level are working hard to identify all cases of AFM, which will hopefully help them figure out what is causing these cases, how to treat kids who are already affected, and how to prevent new cases.
They are identifying more and more cases of AFM even though few states have mandatory reporting, AFM isn’t on the Nationally Notifiable Condition List, and reporting of cases to the CDC is voluntary.
More on Making AFM Reporting Mandatory
- CSTE – Revision to the Standardized Surveillance and Case Definition for Acute Flaccid Myelitis
- CDC – Surveillance Case Definitions for Current and Historical Conditions
- CDC Telebriefing: Update on Acute Flaccid Myelitis (AFM) in the U.S.
- Acute Flaccid Myelitis (AFM)
- Study – Acute flaccid myelitis: A clinical review of US cases 2012-2015.
- Is EV-D68 infection a cause of acute flaccid myelitis in children?
- MMWR – Notes from the Field: Enterovirus A71 Neurologic Disease in Children — Colorado, 2018
- Clinical Trial – European Paediatric AFM Associated With EV-D68 Follow-up Study.
- Study – Clinical Features of Acute Flaccid Myelitis Temporally Associated With an Enterovirus D68 Outbreak: Results of a Nationwide Survey of Acute Flaccid Paralysis in Japan, August-December 2015.
- CDC – Data Collection and Reporting
- The Never Ending Fight for Public Health Funding
- National Notifiable Diseases Surveillance System (NNDSS)
- 2018 National Notifiable Conditions
- Differences In Disease Reporting: An Analysis Of State Reportable Conditions And Their Relationship To The Nationally Notifiable Conditions List
- Review of and Recommendations for the National Notifiable Disease Surveillance System: A State and Local Health Department Perspective
- EIP Network Activities
- Study – National Communicable Disease Surveillance System: A review on Information and Organizational Structures in Developed Countries
- Study – Notifiable condition reporting practices: implications for public health agency participation in a health information exchange
- Study – How outbreaks of infectious disease are detected: a review of surveillance systems and outbreaks.
- Reportable Condition Knowledge Management System (RCKMS)
- Mandatory Reporting Not Required for Acute Flaccid Myelitis; Parents, Lawmakers Working to Change
- Gillette Joins National Call for Acute Flaccid Myelitis Testing and Reporting
- Utah Reportable Diseases
- Colorado Reportable Diseases
- Washington Reportable Diseases
- CDC – Lesson 6: Investigating an Outbreak
- CDC – Outbreak Investigation: A Cheat Sheet
Updated on December 10, 2018
Last Updated on December 10, 2018 by Vincent Iannelli, MD