Tag: AFP

The Case for Making AFM Reporting Mandatory

There have been 90 cases of acute flaccid myelitis (AFM) so far this year, with another 162 cases under investigation by the CDC and state and local health departments.

“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.

The Nationally Reportable Disease List depends on state laws for any mandate to report.
The Nationally Notifiable Condition List depends on state laws for any mandate to report.

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:

  1. 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.
  2. 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.
  3. Report cases as soon as possible and continue surveillance.
  4. 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…

Utah has already added AFM to its list of notifiable conditions. Has your state?
Utah, Washington and Colorado have already added AFM to their list of notifiable conditions. Has your state?

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.

CP-CRE was added to the National Notifiable Disease List in 2018 at the 2017 CSTE annual meeting.
CP-CRE was added to the National Notifiable Condition List in 2018 at the 2017 CSTE annual meeting.

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

Updated on November 13, 2018

What to Know About Hand, Foot, and Mouth Disease

Have your kids ever had a coxsackievirus A16 infection?

Don’t think so?

What about Hand, Foot, and Mouth Disease (HFMD)?

Symptoms of  Hand, Foot, and Mouth Disease

Hand, Foot, and Mouth Disease is a very common childhood disease that most of us end up getting at some point, typically before we are about five years old. At least you hope you do, because you don’t want to get it as an adult…

Would you recognize these symptoms of HFMD?
Would you recognize these symptoms of HFMD? Photo courtesy Medicina Oral S.L.

Most people are familiar with the classic symptoms of HFMD, which can include:

  • a few days of fever, often up to about 102 degrees F
  • red spots that can turn into blisters on the child’s palms (hand) and soles (foot), but often also on their knees, elbows, and buttocks
  • sores or ulcers in a child’s mouth which are often painful, causing mouth pain or a sore throat and excessive drooling
  • a reduced appetite, which can sometimes lead to dehydration

Symptoms which can last up to 7 to 10 days.

Although that’s the end of it for most kids, a few weeks after the other symptoms have gone away, some kids will have peeling of the skin on the child’s fingers and toes. They might even lose their fingernails and toenails (nail shedding). This is only temporary though, and new nails should quickly grow back.

To confuse matters though, like other viral infections, not all kids have classic symptoms when they get HFMD. Some don’t have a fever, while others don’t have the rash on their hands and feet, which can make it easy to confuse with other viral infections that cause mouth ulcers, like herpangina.

Some kids don’t have any symptoms at all, but surprisingly, they can still be contagious.

Facts About Hand, Foot, and Mouth Disease

HFMD is caused by the coxsackievirus A16 virus and a few other enteroviruses, including enterovirus 71 and coxsackievirus A6. Because more than one virus can cause HFMD, it is possible to get it more than once.

Other things to know about HFMD include that:

  • it is very contagious, especially if you have close contact with nose and throat secretions, fluid from blisters, and feces of someone infected with HFMD, especially during their first week of illness
  • the incubation period for HFMD, the time when you were exposed to someone to when you develop symptoms, is about 3 to 7 days
  • people with HFMD disease can continue to be contagious for days or weeks after their symptoms have stopped, although this isn’t a reason to keep them out of school or daycare. In fact, as long as they don’t have fever and feel well, kids with HFMD can likely go to daycare or school.
  • there is no specific treatment for HFMD, except symptomatic care, including pain relief, fever reducers if necessary, and extra fluids
  • unlike other viruses which are common in the winter, HFMD season is during the spring, summer, and fall
  • complications of HFMD disease are rare, but can include viral meningitis, encephalitis, and a polio-like paralysis
  • HFMD is not the same as foot-and-mouth or hoof-and-mouth disease that affects animals
  • there is currently no vaccine to prevent you from getting HFMD, although cross reactivity between polio vaccines and enterovirus 71 might lead to milder symptoms if you are vaccinated and an EV-71 vaccine is approved in China

Most importantly, to avoid getting HFMD, wash your hands after changing your child’s diaper, teach them to cover their coughs and sneezes, and don’t share cups or other personal items.

Although many of us had HFMD when we were kids, remember that there are multiple viruses that can cause it. When outbreaks occur and we see more cases in adults, it is likely because it isn’t being caused not by coxsackievirus A16, but by a less commonly seen enterovirus that we aren’t immune to, like coxsackievirus A6.

More on Hand, Foot, and Mouth Disease