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 neuroimmune 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 NIH. We 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 neuroimmune 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.