Parents of children who had a horrifying polio-like illness are accusing the Centers for Disease Control of hiding the deaths of two children who suffered from the condition.
The parents say by not publicly acknowledging the two deaths, the agency is intentionally downplaying the severity of acute flaccid myelitis (AFM), a disease that paralyzes healthy children in a matter of hours.
“I feel like they’re just sugar-coating this,” said Katie Bustamante, whose son Alex, age 6, died in May. “It eliminates my trust in the CDC.”
Their accusations come amid a wave of criticism from parents of children with AFM and from some of the CDC’s own medical advisers. In a recent on-camera interview with CNN, a group of parents gave the agency an “F” for its handling of the outbreak.
A CDC official said while she couldn’t comment directly on the boys’ cases, there may be a “lag” in AFM reporting from physicians to health departments to the CDC.
“I think we want to catch up with the backlog,” said Dr. Anne Schuchat, principal deputy director of the CDC, a 30-year veteran of the CDC and a retired rear admiral in the US Public Health Service. “Even the past week we’ve expanded the number of disease detectives on the program.”
Schuchat, who twice served as acting director of the agency and helped lead the fight against pandemic flu, SARS and anthrax, said she was sorry to hear that the parents think the CDC is hiding something.
“I certainly want to make sure the information that we have is shared as quickly as possible,” Schuchat said. “We wish we understood all that we need to about this disease and how to best diagnose it, how to treat it and how to give families enough information about what to expect. I think it’s very challenging when your child has been through something quite traumatic to not even know what the prognosis is.”
She added that there’s no simple lab test for AFM, so CDC disease detectives have to carefully review medical records.
SOURCE: CNN, by Elizabeth Cohen