AFM “Emergency Status” Leaves CDC Catatonic
“AFM is now at emergency status” US Centers for Disease Control and Prevention (CDC) Principal Deputy Director Anne Schuchat, MD reportedly told a group of parents recently during a closed-door meeting. The parents, whose children are affected by a serious condition called acute flaccid myelitis (AFM), have been looking for answers from the CDC for months and in many cases, years.
AFM affects the nervous system causing muscle weakness and paralysis in certain populations. The condition is grabbing headlines as seemingly random clusters of children across the US are being struck with the affliction. The uptick in outbreaks, which the CDC still doesn’t know a lot about, have been regularly surging in the late summer and into the fall since the agency first noted large numbers of cases being reported in 2014.
According to the CDC there have been 90 confirmed cases of AFM in 27 states with 11 additional states have possible cases. These 90 confirmed cases are among the total of 252 reports that CDC received of patients under investigation. To this day, the CDC does not require mandatory reporting of AFM by the greater health community.
For the public, who wants to have faith and trust that the CDC is doing its job, the last four years have been a frustrating letdown. In an October 2018 tele-briefing with the Director of CDC’s National Center for Immunization and Respiratory Diseases Nancy Messonnier, she admitted “there is a lot we don’t know about AFM” and continued saying “we haven’t been able to identify the causes of this mystery illness.” The CDC has been openly criticized by parents, doctors and even its own AFM advisors around the country for mismanaging several aspects of its response to AFM over the last four years.
Dr. Keith Van Haren assistant professor of neurology at the Stanford University School of Medicine and a CDC advisor told CNN recently, “We feel like we’re not being listened to…It shouldn’t be taking this long to confirm these cases”.
While another CDC advisor, Dr. Kenneth Tyler, a professor and chair at the Department of Neurology at the University of Colorado School of Medicine stated, “This is the CDC’s job. This is what they’re supposed to do well. And it’s a source of frustration to many of us that they’re apparently not doing these things,”
The CDC has also been slow in guiding pediatricians and emergency room physicians on how to diagnose and treat the children. In a possible AMF situation where every second counts, the CDC’s apathy my actually be amplifying an already serious outbreak in progress. Emergency rooms are still frequency sending children home when they have signs of AFM blaming the symptoms on other causes.
Recently HighWire host Del Bigtree interviewed Mikell Sheehan, spokesperson for the Facebook AFM awareness group A.F.M.-Acute Flaccid Myelitis Awareness, Our Generations Polio. Her story is all too common in a current medical system looking for direction from a CDC regulatory agency who appears to be asleep at the wheel. Sheehan’s daughter Bailey was sent home two times from her pediatrician after being told her initial AFM symptoms were just the affects of a cold caused by an enterovirus. Days later Sheehan rushed Bailey to the emergency room after her leg became paralyzed. By the time they reached the hospital, Bailey’s entire right side was paralyzed. The doctor’s at Randall’s Children’s Hospital in Portland performed blood work and an X-ray, which came back normal. Once again Sheehan, and her now-paralyzed daughter, were sent home. After immediately doing her own research online with her husband, Sheehan read about an enterovirus 68 causing paralysis in children and that she needed to see a neurologist. She called her pediatrician with this information and was seen promptly. This time, the pediatrician acted quickly and secured a room at the hospital for Sheehan and her daughter. Upon being admitted, Bailey saw six doctors in the first five minutes and testing started. Sheehan stated, “They did not know what it was. They did not know how to treat it. And they were on Google, the same as I was, looking for answers”
CNN recently chronicled the stories of two children, Alex Bustamante and Carter Roberts, who both were diagnosed with AFM and passed away in 2018. Yet the CDC says since 2014, there has only been one death from AFM that occurred in 2017. In the CDC’s most recent November tele-briefing, Messonnier was asked point blank about any reports of AFM deaths in 2018. Messonnier stated that “so far, in 2018, we have not had any reported deaths.” The question was then put to her, “Have you had any deaths among patients — deaths in 2018 from patients who were diagnosed in previous years?” To this, Messonnier admitted, “one of the gaps in our program is that we don’t have long-term follow up…”
CDC Deputy Director Schuchat, who has been praised for her leadership in the response to Ebola and Zika outbreaks, reportedly promised
Calls to local health departments, senators and congressional representatives asking them to press the CDC to make AMF nationally notifiable, to establish national treatment protocols and to increase funding for research will aid in the effort to help improve the outcomes for future children.