Acute Flaccid Myelitis Update

Breaking News – The CDC has announced that they have officially established the Acute Flaccid Myelitis (AFM) Task Force. (see below).

We recently got an update about the AFM outbreak during a CDC TeleBriefing with Nancy Messonnier, MD, Director, National Center for Immunization and Respiratory Diseases.

CDC Telebriefing: Update on Acute Flaccid Myelitis (AFM) in the U.S.

Unfortunately, we didn’t get the real answer we were looking for – how to stop the outbreak.

Acute Flaccid Myelitis Update

Since then, we have learned that:

  • the case count is up to 106 confirmed cases (up from 90 last week)
  • an additional 167 cases are under investigation (up from 162 last week)
  • cases have been reported in 29 states (up from 27 states last week)

In other news:

  • the CSTE will be issuing issued a new statement on AFM reporting reaffirming that they “are confident state and local health departments are working closely with doctors to ensure suspected cases are reported.”
  • the CDC will be posting updated treatment guidelines soon – it didn’t sound like it would be much different than previous guidelines though…
  • an MMWR early release, Increase in Acute Flaccid Myelitis — United States, 2018,  will provide details on the first 80 cases of 2018 – but sound similar to what we have learned from outbreaks in 2014 and 2016…
  • the CDC is working with local and state health departments on better long term tracking of cases – something parents have been pushing for!
  • an AFM Task Force has been established to “bring together experts from a variety of scientific, medical, and public health disciplines to help solve this critical public health issue.”

Most importantly though, we again learned that the CDC still doesn’t feel that they have enough evidence to say that any one thing is causing AFM.

AFM Cases

In addition to this year’s cases, there were:

  • 33 confirmed cases in 16 states in 2017
  • 149 confirmed cases in 39 states in 2016
  • 22 confirmed cases in 17 states in 2015
  • 120 confirmed cases in 34 states in 2014 – with most of the cases being reported in California (24), Colorado (10), Utah (6), Massachusetts (9), Virginia (5), Indiana (5), and Illinois (4)

What’s next?

A report from the AFM Task Force will be released at the CDC’s Office of Infectious Diseases’ Board of Scientific Counselors (BSC) December 6, 2018, public meeting in Atlanta.

More on Acute Flaccid Myelitis News

Updated on November 20, 2018

Can Your Sick Child Still Go to Daycare or School?

There are a lot of different rules that dictate when kids can go to daycare or school when they are sick.

Kids don't always have to stay at home from daycare or school when they are sick.
Kids don’t always have to stay home from daycare or school when they are sick.

The actual rules of your daycare or school are the ones that you are likely most familiar with, but there are also recommendations from the American Academy of Pediatrics and the CDC, in addition to  state-specific regulations.

Can Your Sick Child Still Go to Daycare or School?

Most people know to stay home when they are sick.

“Stay home when you are sick. If possible, stay home from work, school, and errands when you are sick. You will help prevent others from catching your illness. Avoid close contact with people who are sick.”

CDC on Information for Schools & Childcare Providers

But what exactly does it mean to be “sick” and how long are you supposed to stay home and avoid other people?

“Most minor illnesses do not constitute a reason for excluding a child from child care, unless the illness prevents the child from participating in normal activities, as determined by the child care staff, or the illness requires a need for care that is greater than staff can provide.”

Recommendations for Inclusion or Exclusion (Red Book)

In general, your child does not need to be kept home and out of daycare or school if they are able to participate in routine activities, do not need extra care, and have:

  • a cold (unless they have a fever) or other upper respiratory infection, even if they have a green or yellow runny nose
  • RSV (unless they have a fever)
  • croup (unless they have a fever)
  • diarrhea that can be contained in a diaper or the child can make it to the bathroom without having an accident, as long as they aren’t having more than 2 stools above their usual or stools that contain blood or mucus
  • a rash without fever – most skin rashes won’t keep your kids out of school, like if they have poison ivy, hives, or even molluscum contagiosum and warts
  • Fifth disease – interestingly, you aren’t contagious once you have the characteristic Fifth disease rash
  • head lice – why not keep kids out of school if they have lice? It doesn’t stop them from spreading. They can get them treated at the end of the day.
  • pinworms – like lice, keeping kids out of school with pinworms isn’t going to stop them from spreading, although kids should be treated
  • pink eye – if caused by an infection, in general, should be able to stay or return if is improving, but keep in mind that most experts now think that kids with pink eye do not need to be excluded from daycare or school at all
  • oral lesions and are able to contain their drool (unless they have a fever), which would include hand foot mouth disease
  • skin lesions that can be covered, and if they can’t, then they can return after they have been on antibiotics for 24 hours (impetigo) or have started treatment (ringworm)
  • strep throat and have been fever free and on antibiotics for 24 hours
  • scabies – if you have started treatment
  • a sore throat (unless they have a fever)

Why don’t you have to keep your kids home when they have RSV or many of these other common childhood diseases?

In addition to the fact that some kids would never get to go to daycare or school, since these diseases are so common, many kids continue to be contagious even after their symptoms have gone away. So excluding them doesn’t really keep the illnesses from spreading through the daycare or school.

So why not just send them when they have a fever or really don’t feel well?

In addition to the possibility that they might be a little more contagious at those times, it is because the typical daycare or school isn’t able to provide the one-on-one care that your child would likely need when feeling that sick, as your child probably isn’t going to want to participate in typical group activities.

Policies that are overly strict at excluding children from daycare and school may also lead to antibiotic overuse, as parents rush their kids to the doctor for and push for a quick cure because they need to go back to work.

Exclusion Criteria for Vaccine Preventable Diseases

While the exclusion criteria for many diseases simply extends to when your child is fever free, starts treatment, or feels well enough to return to daycare or school, for many now vaccine-preventable diseases, you will be excluded (quarantined) for much longer:

  • hepatitis A virus infection – exclusion for one week after illness starts
  • measles – exclusion until four days after start of rash
  • mumps – exclusion until five days after start of parotid gland swelling
  • pertussis – exclusion until completes five days of antibiotics or has had cough for at least 21 days
  • rubella – exclusion until seven days after start of rash
  • chicken pox – exclusion until all lesions have crusted
  • diphtheria – if survives having respiratory diphtheria, would likely be excluded until finishes treatment and has two negative cultures at least 24 hours apart
  • rotavirus – as with other diseases that causes diarrhea, children should be excluded until “stool frequency becomes no more than 2 stools above that child’s normal frequency” as diarrhea is contained in the child’s diaper or they aren’t having accidents
  • tetanus – if survives having tetanus, wouldn’t be excluded, as tetanus is not contagious

Unfortunately, kids are often contagious with many of these diseases, especially measles and chicken pox, even before they have obvious symptoms, which is why large outbreaks used to be so common.

Children will often be excluded from daycare or school if they are unvaccinated or not completely vaccinated and they are exposed to a vaccine-preventable disease.

More on Sending Your Sick Child to Daycare or School

 

Does Your Child Need an RSV Test?

A lot has changed since this Kansas City RSV outbreak back in 2013.
A lot has changed since this Kansas City RSV outbreak back in 2013.

Your toddler has a cough and runny nose and there is a notice that RSV is going around at daycare…

Do you need to rush to your pediatrician?

Does your child need an RSV test?

Like many things, it depends on who you ask.

For example, the folks at your child’s daycare might push for a visit and an RSV test, thinking it will help them keep the virus from spreading to other kids.

It won’t.

Does Your Child Need an RSV Test?

If an RSV test is available, why not do it?

“Our study showed that a simple nasal swab, while less painful for infants than NPA, failed to detect about one third of cases that were RSV positive by nasopharyngeal aspirate.”

Macfarlane et al on RSV testing in bronchiolitis: which nasal sampling method is best?

For one thing, the test isn’t that accurate, especially when done with a nasal swab, the most commonly used method. And while less invasive than a nasopharyngeal aspirate, if done correctly, sticking a nasal swab up your child’s nose, rotating it around a few times, and then getting a sample isn’t exactly something kids enjoy.

Mostly though, since there is no treatment for RSV, what are you going to do with those test results, whether or not they are positive?

Remember, RSV is a very common respiratory virus that can cause a cold, bronchiolitis, or pneumonia. But testing positive for RSV doesn’t mean that your child has bronchiolitis or pneumonia. Those are typically diagnosed clinically, based on the signs and symptoms that your child has, such as wheezing and trouble breathing.

Similarly, testing negative for RSV doesn’t mean that your child doesn’t have bronchiolitis or pneumonia.

“Clinicians should diagnose bronchiolitis and assess disease severity on the basis of history and physical exam.

When clinicians diagnose bronchiolitis on the basis of history and physical examination, radiographic or laboratory studies should not be obtained routinely.”

AAP on the Clinical Practice Guideline: The Diagnosis, Management, and Prevention of Bronchiolitis

Is there ever a role for RSV testing?

RSV testing might be a good idea when an infant has apnea or other uncommon symptoms.

And if a child is getting monthly Synagis injections and has a suspected case of RSV, it is a good idea to confirm that they actually have RSV.

Why?

If they really do, then you can stop getting Synagis injections, as they are unlikely to get RSV again in the same season.

“In the event an infant receiving monthly prophylaxis is hospitalized with bronchiolitis, testing should performed to determine if RSV is the etiologic agent. If a breakthrough RSV infection is determined to be present based on antigen detection or other assay, monthly palivizumab prophylaxis should be discontinued because of the very low likelihood of a second RSV infection in the same year. Apart from this setting, routine virologic testing is not recommended.”

AAP on the Clinical Practice Guideline: The Diagnosis, Management, and Prevention of Bronchiolitis

That’s pretty clear.

The American Academy of Pediatrics guidelines say that routine RSV testing is not recommended.

Need another good reason to avoid routine RSV testing?

Do you know how long kids with RSV shed the virus or can test positive after having an RSV infection?

“People infected with RSV are usually contagious for 3 to 8 days. However, some infants, and people with weakened immune systems, can continue to spread the virus even after they stop showing symptoms, for as long as 4 weeks.”

CDC on RSV Transmission

Apparently, it is a long time, which means that your child might have a new respiratory infection, but still test positive for RSV because they had it a month ago.

You might actually be “diagnosing” an old infection and not the virus that is causing your child’s current symptoms.

Do you still want an RSV test anyway? Talk to your pediatrician.

Did someone order an RSV test, but you are now wondering if it was necessary? Talk to your pediatrician.

Remember that an RSV test won’t change your child’s treatment (breathing treatments and steroids are no longer routinely recommended when infants have RSV), won’t help predict how sick your child might get, and won’t tell you if your child can return to daycare.

What To Know About RSV Tests

You likely won’t be able to avoid RSV season, especially if your kids are in daycare, but you can avoid RSV testing season.

More on RSV Tests

What to Know About the Acute Flaccid Myelitis Investigations

Although you may just now be hearing about acute flaccid myelitis, it is important to understand that it isn’t new.

The rise in AFM cases began in 2014 and seem to occur every other year.
The rise in AFM cases began in 2014 and seem to occur every other year.

It wasn’t even new when we started to see an increased number of cases a few years ago.

What is new, is that we are seeing an increased number of cases.

Acute Flaccid Myelitis Timeline

AFM refers to acute (sudden onset) flaccid (droopy or loose muscles) myelitis (inflammation of the spinal cord) and it is a subtype of acute flaccid paralysis.

If that explanation doesn’t really help you, it might help to understand that paralytic polio, like AFM, is another subtype of acute flaccid paralysis.

“In August 2012, the California Department of Public Health (CDPH) was contacted by a San Francisco Bay area clinician who requested poliovirus testing for an unvaccinated man aged 29 years with acute flaccid paralysis (AFP) associated with anterior myelitis (i.e., evidence of inflammation of the spinal cord involving the grey matter including anterior horn cell bodies) and no history of international travel during the month before symptom onset. Within 2 weeks, CDPH had received reports of two additional cases of AFP with anterior myelitis of unknown etiology.”

Acute Flaccid Paralysis with Anterior Myelitis — California, June 2012–June 2014

That seems to be about when this started, in 2012.

Unfortunately, they didn’t figure out what was causing the paralysis in these three patients, despite extensive testing and more cases followed.

“To identify other cases of AFP with anterior myelitis and elucidate possible common etiologies, CDPH posted alerts in official communications for California local health departments during December 2012, July 2013, and February 2014.”

Among 23 cases, California health officials found that the median age of the patients was 10 years old, only two tested positive for EV-D68, although most did have a recent “an upper respiratory or gastrointestinal prodrome.”

“Acute flaccid paralysis (AFP) with anterior myelitis is not a reportable condition, and baseline rates of disease are unknown but are likely quite low. Data from 1992–1998 on children aged <15 years in California indicated an incidence of 1.4 AFP cases per 100,000 children per year and did not identify a single case of AFP with anterior myelitis.”

California wasn’t the only state with cases.

In 2014, there were at least 12 cases in Colorado and 11 in Utah.

“In response to the CDPH and CHCO reports, the CDC established a case definition for enhanced nationwide surveillance of AFM, which included individuals less than 21 years of age with acute flaccid limb weakness and MRI involvement of predominantly the gray matter of the spinal cord without identified etiology presenting after August 1, 2014.”

Messacar et al on Acute Flaccid Myelitis: A Clinical Review of US Cases 2012–2015

All together though, in 2014, once  the CDC began actively investigating cases, at least 120 cases were discovered in 34 states. The cases were associated with a large outbreak of EV-D68-associated respiratory illness, although they weren’t able to conclusively link those respiratory illnesses to the AFM cases.

Is there any evidence that there were a lot of cases before 2012?

Or that the CDC has dropped the ball and hasn’t been doing enough to investigate cases?

Not if you look at the timeline.

The CDC was involved very early, called for all cases to be reported, and is actively investigating those cases.

CDC activities include… using multiple research methods to further explore the potential association of AFM with possible causes as well as risk factors for AFM. This includes collaborating with experts to review MRI scans of people from the past 10 years to determine how many AFM cases occurred before 2014, updating treatment and management protocols, and engaging with several academic centers to conduct active surveillance simultaneously for both AFM and respiratory viruses.

CDC on the AFM Investigation

And if the first cases in California and Colorado triggered so much attention, isn’t it likely that any cases anywhere else would have done the same thing?

That makes it very unlikely that many cases were missed in earlier years.

  • EV-D68 first identified as a cause of respiratory tract infections – 1962
  • the first reports that EV-D68 could cause severe, even fatal respiratory disease – 2008
  • first AFM cases are discovered in California – August 2012
  • the Colorado Department of Public Health and Environment notifies the CDC about a cluster of AFM cases at Children’s Hospital Colorado and a joint investigation begins between the CDPH, CDC, and the physicians caring for the patients  – September 2014
  • the CDC issues a health advisory on Acute Neurologic Illness with Focal Limb Weakness of Unknown Etiology in Children and calls on local and state health departments to report patients to the CDC – September 2014
  • the CDC conducts a conference call on Neurologic Illness with Limb Weakness in Children, so that clinicians could learn about the latest situation, surveillance, and CDC clinical guidance for AFM testing, patient evaluation and case reporting – October 2014
  • the CDC posts Interim Considerations for Clinical Management – November 2014
  • 120 AFM cases in 34 states – 2014
  • Council of State and Territorial Epidemiologists AFM case definition adopted – June 2015
  • 22 AFM cases in 17 states – 2015
  • 149 AFM cases in 39 states – 2016
  • Council of State and Territorial Epidemiologists AFM case definition updated, which once again, recommends against adding AFM to the Nationally Notifiable Disease List – June 2017
  • 33 AFM cases in 16 states, including one death – 2017
  • CDC Telebriefing on Acute Flaccid Myelitis in the US with Dr. Nancy Messonnier, director of CDC’s National Center for Immunization and Respiratory Diseases – August 2018
  • 90 AFM cases confirmed in 27 states among 252 reported cases that are being investigated – 2018

The other issue that concerns many parents is why a definitive cause hasn’t yet been identified. And why don’t we have treatments or a cure yet?

“To date, no pathogen (germ) has been consistently detected in the patients’ spinal fluid; a pathogen detected in the spinal fluid would be good evidence to indicate the cause of AFM since this condition affects the spinal cord.”

CDC on AFM Investigation

Although enteroviruses can be difficult to detect in spinal fluid, it is important to keep in mind that isn’t the only thing that is keeping experts from declaring the investigation over and naming a cause, such as EV-D68.

“Among 41 patients whose upper respiratory tract samples were available for enterovirus/rhinovirus testing at CDC, 17 (41%) tested positive: eight (20%) for EV-D68 and nine (22%) for eight other enterovirus/rhinovirus types.”

Eyal Leshem on Notes from the Field: Acute Flaccid Myelitis Among Persons Aged ≤21 Years — United States, August 1–November 13, 2014

Another big issue is that EV-D68 has not been detected in every, or even most AMF patients, and many others have been found to have other enteroviral infections, including EV-A71.

Could it be a coincidence that investigators are finding these enteroviruses simply because it is the season for them to appear? That would mean something else is causing these kids to have AFM.

“During September–November 2016, 10 confirmed cases of AFM were reported in Washington. No common etiology or source of exposure was identified. Enterovirus-A71 was detected in one patient and EV-D68 in two patients, one of whom also tested positive for adenovirus.”

Acute Flaccid Myelitis Among Children — Washington, September–November 2016

While the focus is on EV-D68 as a cause and everyone wants an answer, no one wants the CDC or other investigators to be wrong.

That doesn’t mean that they should be overly cautious and waste time or resources once an answer is evident, but just that they should follow sound epidemiological principles, get the right answer, and help stop kids from getting AFM.

What’s Next for AFM?

There are still a lot of unknowns about AFM, but this is likely what we can expect in the coming months:

  • the CDC will continue to investigate all unconfirmed cases that have occurred this year, which can take about four weeks after a case is reported and all necessary information is sent in. Keep in mind that since we don’t know if the CDC has already received all of the information on the cases they are investigating, we don’t know when they will finish investigating any pending cases.
  • local or state health departments will likely reach out to treating physicians to get followup about AFM patients about two months after they developed limb weakness and then report this short-term follow-up data to the CDC. In general, the CDC does not seem to contact patients directly.

From the current investigation, information from outbreaks and cases over the previous years, and cases in other countries, we will hopefully get the answers we need soon to prevent and treat AFM.

During the COCA Call, the AFM Surveillance Team will discuss the activities CDC is conducting as part of its AFM investigation.
The AFM Surveillance Team will participate in a COCA Call in mid-November.

Maybe some of those answers will come during a Clinician Outreach and Communication Activity (COCA) Call on November 13, when members from the CDC Acute Flaccid Myelitis Surveillance Team discuss the “activities the CDC is conducting as part of its investigation into AFM.”

The fact that the CDC has an Acute Flaccid Myelitis Surveillance Team will be news and is hopefully reassuring to some folks…

This is also probably a good time to remind folks that funding for public health has been declining in recent years, even as we expect our public health officials to respond to more things and react more quickly to keep us all safe and healthy. Let’s make sure we fund our public health programs, including the CDC and NIH, so that they have all of the resources they need to address all of today’s public health challenges.

More on the Acute Flaccid Myelitis Timeline

Updated on November 13, 2018

Is Acute Flaccid Myelitis Contagious?

Many people were surprised by a comment by Dr. Robert Redfield, the director of the Centers for Disease Control and Prevention, in an interview for “CBS This Morning,” during which he said that acute flaccid myelitis:

“doesn’t appear to be transmissible from human to human.”

Wait, then how do kids get it?

Is Acute Flaccid Myelitis Contagious?

Since we don’t actually know what causes AFM, it is certainly possible, although rather unlikely, that it is caused by something that is not communicable.

But remember, the leading theory is that AFM is caused by an enteroviral infection, either EV-D68 and EV-A71, as most kids develop symptoms shortly after they had viral symptoms, and these two viruses are most commonly identified.

And you are typically contagious when you are sick with an enteroviral infection.

So how can the CDC Director say that AFM “doesn’t appear to be transmissible from human to human?”

It is because even if the virus that causes AFM is communicable, you can’t actually catch AFM from someone.

adult child cooperation daylight
Wash your hands to help avoid viral infections. Photo by Andres Chaparro on Pexels.com

Just like polio.

While the polio virus itself is communicable, paralytic polio isn’t. You can’t catch paralytic polio. Instead, you can catch polio, and then you have the small chance that it develops into paralytic polio.

It may not sound like a big difference, but it is.

Just consider what might happen if AFM itself was contagious, and if most of the kids who were exposed to someone with AFM developed AFM themselves…

We would likely see a lot more cases of AFM, especially in clusters in homes, daycare centers, and schools.

Instead, most cases seem to be isolated.

AFM Clusters

But aren’t there reports of clusters of AFM?

“In September 2016, an acute care hospital in Arizona notified the Maricopa County Department of Public Health (MCDPH) of a suspected case of AFM and subsequent cluster of 11 children who were evaluated with similar neurologic deficits; differential diagnoses included transverse myelitis and AFM.”

Notes from the Field: Cluster of Acute Flaccid Myelitis in Five Pediatric Patients — Maricopa County, Arizona, 2016

Yes, kind of.

But they aren’t clusters of epidemiological linked cases.

In Arizona, for example, only four of the 11 children were confirmed to have AFM and “no epidemiologic links were detected among the four patients.”

“In October 2016, Seattle Children’s Hospital notified the Washington State Department of Health (DOH) and CDC of a cluster of acute onset of limb weakness in children aged ≤14 years.”

Acute Flaccid Myelitis Among Children — Washington, September–November 2016

Similarly, at Seattle Children’s Hospital, the ten cases in their “cluster” had nothing in common, except for having prodromal respiratory or gastrointestinal symptoms about seven days before developing AFM symptoms.

It is likely that you see “clusters” at some hospitals simply because they are referral hospitals for a large region.

But even if we don’t know why some kids with these viral infections develop paralysis and other don’t, if they are the cause, then you wouldn’t develop AFM if you never actually had the virus.

“While we don’t know if it is effective in preventing AFM, washing your hands often with soap and water is one of the best ways to avoid getting sick and spreading germs to other people.”

About Acute Flaccid Myelitis

So handwashing and avoiding others who are sick is still the best strategy to try and avoid getting AFM.

And getting vaccinated against polio and using insect repellents can help you avoid other known causes of AFP – polio and West Nile virus.

More on Preventing AFM

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

Autistic Adults

A common argument for those who believe in a true autism epidemic that is associated with vaccines is that there are no autistic adults.

“Where are all the adults with classic autism? Where are the hand flapping, head banging, self-abusive, spinning, screaming, rocking, stimming, non-verbal and violent 40, 50, 60, 70, 80 and 90 year olds wearing autism helmets and diapers? Where are the grown-ups at the mall experiencing violent tantrums, seizures and GI tract problems?”

Robert F Kennedy, Jr on Is the Autism Epidemic Real?

Of course, the argument is easy is disprove.

Kennedy on Classic Autism

The worst part of Kennedy’s statement is how he chooses to define “classic autism.”

“Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time.”

Finn Gardiner on The Problems with Functioning Labels

Considering that he has also used the term holocaust when talking about autism, it’s not a surprise though.

“We all deserve to be respected for who we are.”

Amy Sequenzia on It is About Respect

But we shouldn’t let folks like Robert F Kennedy, Jr define what autism is for everyone.

Autistic Adults

What’s the first clue that there are autistic adults?

Yes, that’s right, it is all of the autistic adults!

Did you know that the Autistic Children’s Aid Society of North London formed in 1962? It later became the The National Autistic Society.

And the first meeting of the National Society of Autistic Children was held in 1965. It became the Autism Society of America.

Around this time, the Sybil Elgar School (1965) was established as the first school for autistic children and Somerset Court (1972) was established as the first residential community for autistic adults.

Think about Kennedy’s claim. Are we to believe that we have no autistic adults now, but in 1972, there was a need for a residential community for autistic adults?

Also consider that the children diagnosed with autism by DSM-III criteria (1980) are now adults, as that was almost 40 years ago.

Some folks, like Robert F Kennedy, Jr, would likely be surprised that autistic adults published a book to help autistic teens and adults go to college.
Some folks will likely be surprised to know that autistic adults published a book to help autistic teens and adults go to college. They shouldn’t be!

Where are the autistic adults?

They are easily found, if you choose to look for them.

Like everyone else, many of them are:

And sure, some have more issues than others. Some are living at home or in supported living arrangements, too many live in poverty, and tragically, too many die young.

That’s why it is important that we all do more to support autistic children, autistic adults, and their families, instead of continuing to believe these folks who push propaganda about vaccines.

More on Autistic Adults