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"Frustrated and disappointed, I think it 's exactly how we feel most of us," said Dr. Keith Van Haren, one of the CDC' s advisors on the issue. AFM and Assistant Professor of Neurology at the Faculty of Medicine at Stanford University.
Van Haren and other doctors those who care for these children say that the agency is slow to collect data and to guide pediatricians and emergency room physicians on how to diagnose and treat children with the disease, called acute flaccid myelitis. .
"It's the work of the CDC, that's what they're supposed to do well, it's a source of frustration for many of us because they apparently do not do that kind of thing," he said. Dr. Kenneth Tyler, Professor and Chair of the Board. the Department of Neurology of the Faculty of Medicine at the University of Colorado and another CDC Advisor on the AFM.
"We are continuing our research to better understand the clinical picture of AD cases, risk factors and possible causes for the increased number of cases," said Dr. Nancy Messonnier, Director of the National Immunization Center and respiratory diseases of 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 are not going to wherever we want, so we have to work harder," she told CNN during an interview. .
So far this year, there have been 62 confirmed cases of AFM and another 93 possible cases are being investigated, according to the agency.
"They must be busy"
Doctors are not the only ones who criticize the CDC's treatment of the devastating disease.
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 first dancer dancing hip-hop 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.
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 stopped earlier. She wonders why this was not done, given that Cambria fell ill in 2016, four years after the first group of MFA cases.
"When I look back now, I tell myself, why did not they know? Why did not they realize it? Why did not they catch something like that? ? " she says.
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 hospitals directly about the AFM, they contacted state health departments and other agencies.
In 2014, 2016 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.
Parents say they have collected data on hundreds of children with the disease and offered to share them with the CDC, but when they contact the agency, they receive a letter of thanks 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 AFM, sharing the concerns of mothers and having many 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 bottom of causality, we need to start with a simple count of the number of cases," said Dr. Benjamin Greenberg, associate professor of neurology at 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 being considered, but that the Council of State and territorial epidemiologists were making this decision, not the CDC.
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 the press conference last month.
But The four medical advisers stated that it was reasonable to focus on enteroviruses. First, clusters of cases occurred during the enterovirus season, late summer and fall. Second, many children had symptoms of enterovirus infection. Thirdly, many patients have been tested positive for an enterovirus, 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 the CDCs focus on enteroviruses, it could lead to a faster treatment or a vaccine, according to the medical advisors interviewed by CNN.
"The CDC really seems to be out of sync with the conclusions that most scientists expect, and we feel we are not being heard," said Van Haren, a Stanford researcher. "We do not understand how the CDC came 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.
"The 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," he said. she told CNN. "We can not explain these three peaks of disease in [2014, 2016 and 2018] by enteroviruses, and as this discriminating scientist would do, we try to think more broadly and make sure we do not miss anything. "
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 said they hoped the meeting would bring about changes.
The four medical advisers expressed hope that the CDC will soon make changes, including by encouraging mandatory reporting, recognition that enterovirus is the likely cause of AFM and better data collection.
"Physicians are on the front lines and what we see is really heartbreaking – children are healthy one day and very deeply disabled in some cases the next day," Van Haren said. "It's what frustrates, disappoints and saddens a lot of us."
CNN's John Bonifield contributed to this story.
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