Sen. Amy Klobuchar and state health leaders on Thursday called for mandatory national reporting of cases of acute flaccid myelitis, or AFM, the polio-like disorder that has stricken as many as seven Minnesota children this year
Mandatory reporting by doctors and hospitals could lead to improved tracking and understanding of the mysterious, paralyzing condition, according to a top Minnesota infectious disease official. It is already required for a number of diseases, including West Nile virus and influenza, but not for AFM.
“That’s something that needs to change,” said Kristen Ehresmann, infectious disease division director at the state Health Department, said at a forum organized by Klobuchar.
Parents of afflicted children agreed, arguing that the underreporting and limited government information has made it challenging for them to understand what’s happening when their children suddenly lose function in their limbs, and to get timely diagnoses.
“We have learned more about these cases from Facebook and support groups than from the CDC,” said Mehdi Ayouche of Chanhassen, whose daughter lost function in her arm and neck and the ability to walk due to AFM this fall.
While his daughter is recovering, Ayouche said he is perplexed why she suffered AFM after a cold, while her twin brother suffered the same cold symptoms and wasn’t affected.
AFM is a condition in which damage to the spinal cord causes lost mobility, usually in the arms and legs, almost always in children. Severe cases have impaired patients’ control of the stomach muscles that support eating and breathing. Common cold viruses seem to have been involved in some, but not all, of the AFM cases this year.
The U.S. Centers for Disease Control and Prevention has reported more than 150 suspected cases of AFM this year, though only 62 have been confirmed. It remains a rare condition that afflicts less than one in 1 million children.
Ehresmann said mandatory national reporting would have been inappropriate until now because there were so few cases, and because doctors didn’t even have an agreed-upon definition. But the surge in reported cases has generated enough reliable information about AFM to conduct more thorough tracking, she said.
Elaine Young of Minneapolis said her son, Orville, contracted AFM in July and isn’t among the six cases confirmed this year by the state Health Department. (A seventh case remains unconfirmed.) She told Klobuchar that underreporting could result in diminished medical, insurance and educational resources for children with AFM.
Most children with AFM regain some mobility through physical therapy or surgeries, studies show. But only a quarter fully recover.
Klobuchar said mandatory reporting of future cases, along with a review of old cases that weren’t diagnosed as AFM, would improve understanding of the growth and epidemiology of the condition.
She said she would press the CDC for more information, but hoped state disease investigators could take a leading role, as they have in helping to solve some national foodborne disease outbreaks.
“Maybe,” she said, “we could help the nation by trying to figure this out.”