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(CNN) – The Centers for Disease Control and Prevention's own medical advisers blame the federal health agency for slowly responding to a polio-like illness that has hit hundreds of children in the past six years.
"Frustrated and disappointed – I think it 's exactly how we feel most of us," said Dr. Keith Van Haren, one of the CDC' s advisers on the "Health and Fitness" issue. AFM and Assistant Professor of Neurology at the Faculty of Medicine at Stanford University.
Van Haren and other doctors who care for these children said the agency was slow to collect data and guide pediatricians and emergency room doctors about how to diagnose and treat children with disease, acute myelitis flaccid.
"It's the work of the CDC. That's what they are supposed to do well. And it's a source of frustration for many of us that they apparently do not do these things, "said Dr. Kenneth Tyler, Professor and Director of the Department of Neurology at the Faculty of Medicine. from the University of Colorado and additional advisor to the CDC. on AFM.
(Credit: Kevin C. Cox / Getty Images)
At a news conference this month, a CDC doctor said the agency was working hard to find the cause of the outbreaks.
"We are continuing our research to better understand the clinical picture of AFD cases, the risk factors and the possible causes of the increased number of cases," said Dr. Nancy Messonnier, Director of the National Center for Immunization and Disease. the CDC.
She said the agency could do a better job of getting the message across on the signs of the MFA.
"We are obviously not doing enough work because we do not want to go everywhere. So we have to work harder, "she told CNN in an interview.
According to the CDC, since 2014, there have been 396 confirmed cases of acute flaccid myelitis, which resembles polio and causes paralysis in children.
This year, there have been 72 confirmed cases of AFM and 119 other possible cases are under investigation, according to the agency.
"They must be busy"
Doctors are not the only ones to criticize the treatment of the disease by the CDC.
On Saturday, five families of AFM children gathered at McKenzie Andersen's 10-year-old home in Albany, Oregon, to celebrate an early Halloween. On vacation, McKenzie will undergo surgery related to a complication of the disease.
McKenzie was a happy and healthy person who practiced hip-hop dancing when she developed pneumonia in 2014. Four days later, she was paralyzed under her neck.
Today, she can only move her left hand, her feet and her toes. She spends most of her time in bed, a breathing fan for her.
While families were enjoying Halloween treats at McKenzie, they spoke of their disappointment with the CDC. The mothers say that the federal agency should do a better job by informing the emergency rooms of the signs of the MFA.
The women, who help run a Facebook group of hundreds of parents whose children have the disease, say that even today, six years after the first set of cases, the emergency rooms are sending back frequently children at home when they show signs of AFM, which explains the paralysis. to a pinched nerve or other cause.
LeMay Axton recounted that this had happened to his granddaughter, Cambria Tate, at the age of 2 years. Now 4 years old, she moves in a wheelchair or while walking on the floor.
She said that she would always wonder if Cambria would have more mobility if her AFM had been caught earlier. She wonders why this was not done, given that Cambria fell ill in 2016, four years after the first MFA case group.
"When I look back now, I say to myself," Why did not they know? Why did not they understand? Why did not they catch something like this? She said.
She said the CDC should address hospitals with specific instructions on MFA signs, such as weak limbs and a sagging face, and what to do about it.
"Come on, we're in 2018. They have to be busy," she says.
Although the CDC did not contact the hospitals directly about the AFM, he contacted the ministries of health and other agencies.
In 2014, and again this year, the CDC provided state health departments with an example of a letter they could send to health care providers describing the symptoms of AFM.
The federal agency has also sent AFM information to more than 6,000 professionals from local, state and federal agencies. State employees were also instructed on how to send lab samples to the CDC for testing purposes.
Facebook group parents also criticized the CDC for its lack of contact with them and other families affected by the AFM.
The parents say they have collected data on hundreds of children with the disease and offered to share it with the CDC, but when they went to the agency, they received a model letter thanking them for their interest.
Messonnier, the CDC doctor, said the parents' voice was "very important".
"For the other diseases I work on, we are definitely working directly with the lobbies," she said. "I guess I did not know this Facebook group in particular."
Scientific litigation
CNN interviewed four physicians who act as medical advisors to the CDC on the AFM, who share the concerns of the mothers and have several other concerns of their own.
Doctors want MFA cases to be reported to the CDC, as is necessary for many other diseases.
"To get to the root of the causes, we need to start with a simple account of the number of cases," said Dr. Benjamin Greenberg, associate professor of neurology at the UT Southwestern Medical Center in Dallas. "We do not know how many cases there are and it's just wrong."
Messonnier said that such mandatory reports were under review, but that the State Council and territorial epidemiologists are making this decision, not the CDC.
Twice, once in 2015 and once in 2017, this group decided that there was no need for the AFM to be the subject of a national report. The CDC has approved.
CDC advisors interviewed by CNN said that the agency had been slow to focus on the enterovirus as the most likely culprit for AFM and had instead continued to seriously consider d & # 39; other causes.
"It's a mystery so far, and we have not solved it yet, so we have to think in general terms," said Messonnier at this month's press conference.
But the four medical advisers said it was reasonable to focus on enteroviruses. First, clusters of cases occurred during the enterovirus season, late summer and fall. Second, many children had the symptoms of an enterovirus infection. Thirdly, many patients have tested positive for the enterovirus virus and these counselors believe that more patients were carrying the virus but were not tested, or that the test was done too late to detect it. Fourth, when scientists infect mice with a particular enterovirus, the animals develop paralysis.
If CDCs focus on enteroviruses, it could lead to faster treatment or a vaccine, according to CNN's medical advisors.
"The CDC really does not seem to be in line with the conclusions that most scientists are getting. We feel like we are not being listened to, "said Van Haren, a Stanford researcher. "We do not understand how the CDC got to where they are."
Messonnier said that although enteroviruses can cause AFM, it is not clear that they are definitely the main culprit. What makes her doubt, she said, is that the virus was not found in the cerebrospinal fluid of patients.
"AFM is a destructive disease of the neurological system. If this virus caused this damage, we expected to find it in the cerebrospinal fluid of most of these patients, and we are not, "she told CNN. "We can not explain these three peaks of disease in [2014, 2016 and 2018] by an enterovirus, and as this type of discriminating scientist would do, we try to think more broadly and make sure we do not miss anything. "
But according to the CDC, the detection of poliovirus in the cerebrospinal fluid of patients is "unusual". Doctors interviewed by CNN believe that enterovirus could follow the same pattern.
The CDC advisors also indicated that they wanted the agency to do more to coordinate efforts across the country to find the best treatment for children with AFM. Some hospitals share the results of their treatments, but there is no systematic, national method for doing so.
"We are trying to systematically collect our data to be smarter over time," said Greenberg, a pediatric neurologist in Dallas. "We are looking for public health officials to help us here."
The CDC plans to meet medical experts next week to discuss treatment considerations, said Messonnier.
The agency's medical advisers say they hope the meeting will make some changes.
The four medical advisers hoped that the CDC will soon make changes, including encouraging mandatory reporting, recognizing that enterovirus is the likely cause of MFA and better data collection.
"Doctors are on the front line, and what we see is really heartbreaking: children are healthy one day and very disabled in some cases the next," said Van Haren. "That's what frustrates, disappoints and saddens many of us."
By Elizabeth Cohen, CNN Senior Medical Correspondent
The-CNN-Wire
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