Urgent Need for AFM Funding: How You Can Help

The continued rise of Acute Flaccid Myelitis is a public health issue that needs immediate action. The Acute Flaccid Myelitis Association has been working hard with the Transverse Myelitis Association to provide a way for our voices to be heard by our legislators. Funding for research and surveillance is desperately needed and filling out this form to contact your legislators is an important first step! Thank you to the TMA and to our community for working together to make the needs of our community heard in Washington. The following text was first published by the TMA on their blog.

Urgent Need for AFM Funding: How You Can Help

By GG deFiebre and Rachel Scott

GG deFiebre is the Associate Director of Research and Education of the Transverse Myelitis Association and Rachel Scott is a member of the Board of Directors of the Acute Flaccid Myelitis Association

Many in our community and around the country have become aware of the term “acute flaccid myelitis” or AFM because of recent news reports about the condition. AFM is an inflammatory disease of the spinal cord characterized by acute onset flaccid paralysis that predominantly affects healthy children and young adults. AFM is similar to the epidemics of poliomyelitis that struck the country in the 20th century, as many children with AFM are left with long-term paralysis, gait disturbance, and significant disability. In 2014, the Centers for Disease Control and Prevention (CDC) in the United States reported a rise in the number of AFM cases. After the 2014 clusters of cases of AFM came to light, the TMA and our Medical and Scientific Council added the newly coined AFM to the group of rare neuro-immune disorders covered by the organization. At that time, we did not know or understand enough about AFM, but we began to create educational materials specifically about AFM, and support and research opportunities for AFM. AFM, like many of the disorders the TMA focuses on, is a paralyzing syndrome that causes damage to the spinal cord and leads to weakness and paralysis in one or more limbs.

Unfortunately, the number of cases of AFM have been increasing, with spikes of cases occurring in the summer and fall every other year. The magnitude of the public health problem generated by AFM in the USA is reflected by the amount of resources needed for diagnosis, care and rehabilitation of children affected by the disease. During the outbreaks in 2018, nearly 50% of the patients required medical management in intensive care units and many of the children required prolonged periods of hospitalization and rehabilitation. Most of the children were left with significant neurological disability including limb paralysis and, in some cases, complete lack of mobility, and some have died.

Due to advocacy efforts of families affected by AFM, the Acute Flaccid Myelitis Association (AFMA), and the medical professionals treating those with AFM, the disorder has gotten the attention of the federal government. For example, last year Senator Kirsten Gillibrand called for $1 billion in funding for AFM research.

An AFM Working Group composed of scientists and clinicians from across North America has been working together with the TMA to publish recommendations for treatment of patients with AFM based on their experiences. The group spans approximately twenty-five institutions and contains over sixty members. Many of the participating institutions have developed research protocols for studying AFM, however, all of these studies lack funding from the NIHWe have a critical opportunity now to advocate for national funding of AFM prevention and treatment.

Why is this opportunity important for everyone in our community, even for those who do not have AFM? As we learn about one of these disorders, it will inform our understanding of all the other disorders. As we develop more effective therapies and treatments, all these disorders will benefit. So, while you may not personally be affected by AFM, those with AFM are part of our community of rare neuro-immune disorders, and we need to stand together when we can. We are stronger together than we are apart. This is a critical time to help those diagnosed with AFM, those who are not yet diagnosed, and our entire community. We hope you will take the time to fill out this form to send a letter advocating for federal funding of AFM to your legislators in Washington. It only takes a few seconds. All you need to do is fill out your address and the form will automatically find your representatives. You can even customize the letter to talk about why you are personally invested in this cause. If you have some time, please also call House Appropriations Committee Members and House Health Committee Members.

Thank you for supporting one another at this critical time.


Clarification from CDC on Case Confirmation

So that we can make sure that the magnitude and severity of AFM is truly understood, we must ensure that all cases of AFM are reported to Center for Disease Control (CDC).

Currently, here’s how a suspected AFM case is reported to the CDC: Physicians are encouraged (but unfortunately, not required) to report cases to their local health departments. These health departments report to the CDC, and the CDC classifies the case as either fitting criteria for AFM, or not fitting criteria for AFM. After the CDC classifies the case, local health departments relay the case status to the physician, who in turn, alerts the family. This is a lengthy process with many levels. We encourage parents to reach out to their local health departments to find out the status of their child’s case, if they haven’t received an update in a timely manner.

In some cases, parents have felt understandably frustrated when a doctor diagnoses their child with AFM, but the CDC classifies the child as “not AFM.” We reached out to the CDC to better understand how they decide to define a specific case as AFM or not. The CDC’s response is as follows:


CDC has case definitions for AFM with specific criteria that we use to classify patients as having a confirmed or probable case of this illness. If a patient does not meet these criteria, they are classified as “not a case” of AFM.  Our AFM case definitions provide a set of consistent criteria to help us define and learn more about this rare condition, and they are the basis for our AFM surveillance. A case classification by CDC is not meant to override a doctor’s diagnosis of a patient’s illness, or his or her treatment and rehabilitation plan. Even though some patients may not meet our case definitions, they are still counted in our AFM surveillance and help us understand the full spectrum of illness. We continue to evaluate our case definitions as we learn more about AFM.

Generally for disease surveillance, the primary goal is to better understand how often a disease occurs and how it affects a population. For our AFM surveillance, we have the additional challenge of trying to figure out what is causing this condition. In order to do this, we need to make sure our case definitions are ruling out other similar conditions, such as transverse myelitis and Guillain–Barré syndrome. This helps us make sure that we are comparing the patients with the most similar illness for risk factors and possible causes, which gives us the best chance of understanding this condition.


I personally was frustrated when I found out that my son’s case from 2016 was not counted as AFM by the CDC. When we reached out, we realized that they didn’t have the MRI showing the inflammation to the grey matter-- a previous MRI was sent that had been read as normal. The CDC isare currently in the process of updating my son’s case.

We encourage parents to reach out in an attempt to determine their child’s case status. Our goal is for the CDC (and other researchers) to have as much information as possible about all cases of AFM in order to improve diagnosis, treatment and prevention in the future.


AFM parents after presenting to the AFM Task Force about their experience with AFM.

AFM parents after presenting to the AFM Task Force about their experience with AFM.

AFM Parents Spread Awareness on Dr. Oz

On January 21st, AFM families partnered with the Dr. Oz show in raising awareness on a national level about Acute Flaccid Myelitis. We were so grateful for the opportunity to raise awareness and provide education to the general public.

Watch a portion of the episode here.

Local parents sat on a panel to talk with Dr. Oz’s medical expert, Dr. Lipkin, and were able to ask about his opinion on AFM research.

Four AFM moms shared their childrens’ stories via video conference.

The highlight was certainly two AFM moms (and AFM Association board members!) telling their childrens’ stories in an interview segment with Dr. Oz.

The show highlighted parents’ personal experiences and frustrations with diagnosis and treatment. We were glad to see the Dr. Oz team choose to highlight children who had been severely affected so that parents watching will see how devastating AFM can become. The show highlighted the immediate onset of symptoms and detrimental effects of the condition, while recognizing that a cause has not been scientifically proven and that, at this point in time, there is not a prevention or cure. We’re excited to continue our relationship with Dr. Oz and continue to educate and raise awareness about AFM.

oz.jpg

AFM Parents Meet with CDC Task Force

On December 4, 2019, the Center for Disease Control and Prevention held their first meeting of the Acute Flaccid Myelitis Task Force. As a result of our advocacy in Washington DC, three parents were invited to present their personal journeys with AFM. It was such an honor to be invited to present--and we were so grateful for the opportunity to share our stories on behalf of all the children with AFM. Each parent shared their personal stories for roughly ten minutes.

The Task Force is made up of the experts in the field who are diagnosing and treating AFM and doing extremely important work--as well as the experts within CDC, many of whom have not ever seen a case of AFM, since they primarily work with the data. Each parent highlighted different areas within our presentations and effectively setting the tone for the meeting. Afterwards, many of the members of the Task Force came to thank us and were still visibly moved by our words--especially by Robin Robert’s. Her story of losing Carter is especially moving and powerful. Robin’s poise and commitment to fighting for Carter, even though he’s gone, is a testament to her strength.

We also had the opportunity to sit down with a TIME reporter for a little over an hour and shared more about our experiences with AFM. Before the Task Force meeting, we had breakfast with Dr. Nancy Messonnier (Director of the National Center for Immunization and Respiratory Diseases) and a dozen other CDC experts and shared some of our concerns regarding the handling of AFM (primarily, the issues with reporting and physician/public education.)

We left feeling positive and encouraged about the work the CDC is doing for AFM and excited about our future involvement. They were right with us--we all agreed that there are major issues with the data CDC receives from the states and that educating the general public as well of physicians is critical before we hit another outbreak in 2020. We look forward to following the good work the AFM Task Force is doing to educate physicians, identify causes and effective treatment and find potential prevention methods.

LVV7_AFM_Task_Force_Inaugural_Meeting_Dec2018_047 (1) copy.jpg

AFM Parents Advocate in D.C.

In the second week in November, members of the Acute Flaccid Myelitis Association and other AFM families from across the country converged on Washington DC to advocate for children affected by AFM. Parents met with legislators and were able to share their concerns about AFM. They presented on the need to make AFM nationally notifiable, the importance of establishing a national treatment protocol, and the value of increased funding for AFM research. Important connections were made, and we look forward to continuing our advocacy and work in Washington as appropriations season draws near.

On November 13, 2018, the advocates met with Anne Schuchat, MD, the principal deputy director of the CDC. Parents were able to share their frustrations with CDC’s handling of AFM and gained insight into the work CDC is doing to learn more about AFM. This meeting set the groundwork for three of our parents presenting at the first AFM Task Force meeting in Atlanta. We are optimistic and encouraged that CDC is taking AFM seriously and will be prepared to address and prevent the impending outbreak in fall of 2020.

46436408_10215058031218582_8244232176128753664_n.jpg