(Photo: Carter Roberts and his mother.)

Parents of two children who have died after contracting AFM have accused the CDC of hiding their deaths. The parents said that by not publicly acknowledging the two deaths, the agency “is intentionally downplaying the severity of acute flaccid myelitis (AFM).” 1 Mom Katie Bustamante, whose 6-year-old son Alex died in May, said,  “It eliminates my trust in the CDC.”2 And she’s not alone, many parents feel that the agency has done a terrible job of handling of the outbreak. Some parents even wonder if the CDC is hiding something.

A CDC official who couldn’t comment directly on the boys’ cases, said there might be a “lag” in AFM reporting from physicians to health departments to the CDC, a typical pass the buck move, but ultimately the CDC doesn’t know much about the disease, how best to diagnose it, or how to treat it.

“Twenty-six states have confirmed cases of AFM, and 11 additional states have possible cases, according to a survey last week by CNN of state health departments. This year there have been 80 confirmed cases of the illness, and 219 cases are currently under investigation, according to the most recent CDC data.

On its AFM surveillance webpage, the CDC doesn’t mention any deaths from AFM. At a press briefing last month, Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, mentioned that the agency knew of one death in 2017, but did not mention any deaths this year, even when asked about it by a reporter.”3

Chris and Robin Roberts also lost their 5-year old son, Carter (who, according to his mother, was vaccinated on schedule), in September after a 2-year battle with AFM. And yet, although his doctors had diagnosed him with AFM- doctors at three different medical centers  (Virginia Commonwealth University, Johns Hopkins and Boston Children’s Hospital) the CDC has yet to register his death. 

So what exactly is the hold-up? No one is sure. The CDC’s current system requires physicians to report cases of AFM to their state health departments, who are in turn supposed to report the cases to the CDC. But according to many pediatricians and doctors- this is happening at every level except the CDC. 

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Dr. Anne Schuchat, principal deputy director of the CDC, a 30-year veteran at the CDC claims they are working “24-7” and taking the issue “seriously.” In fact, the agency has recently added 14 officers from the Epidemiologic Intelligence Services (who they call disease detectives) to help review AFM reports filed by state health departments. But since hundreds of kids aren’t getting sick every day, shouldn’t they be able to use the system they set up? Are they hiding something? Or are they scrambling to understand why kids vaccinated against polio, are getting an illness that we used to call polio?