CNN – Center for Disease Control and Preventive Medical Advisors criticizes the federal health care agency for being slow to…
CNN – Center for Disease Control and Preventive Medical Advisors criticizes the federal health care agency for being slow to respond to a polio-like disease that hit hundreds of children over the past six years.
“Frustrated and Disappointed – I think that’s exactly how most people feel,” says Dr. Keith Van Haren, one of the CDC advisors at AFM and an assistant professor of neurology at Stanford University School of Medicine.
Van Haren and other doctors who care about these children say that the agency has been slow to collect data and to guide pediatricians and emergency recipients on how to diagnose and treat the children affected by the disease, acute windy myelitis. [1
9659002] “This is CDC’s job. This is what they should do well. And it is a source of frustration for many of us that they obviously do not do these things, “said Dr. Kenneth Tyler, professor and chairman of the neurological department at the University of Colorado School of Medicine, and another adviser to the CDC at AFM.
In a press release this month, a CDC doctor said the agency worked hard to find the cause of the outbreak.
“We continue to investigate in order to better understand the clinical picture of AFM cases, risk factors and possible causes of the increase of cases “said Dr. Nancy Messonnier, Head of CDC’s National Center for Immunization and Respiratory Diseases.
She said the agency could do a better job to get the message out about the signs of AFM. 19659002]” Obviously, we are not doing well enough job because it does not come to any place we want, so we have to work harder, “CNN told an interview.
According to the CDC, since 2014 There have been 396 co confirmed cases of acute slap myelitis, similar to polio and cause paralysis in children.
This year there have been 72 confirmed cases by AFM, and another 119 possible cases are investigated according to the Authority.
Doctors are not the only ones critical of the CDC’s handling of the devastating disease.
On Saturday, five families whose children have AFM collected at home for 10 McKenzie Andersen in Albany, Oregon, to celebrate an early Halloween. McKenzie will have surgery in connection with disease complications.
McKenzie was a happy and healthy hip-hop dancing first degree when she developed pneumonia In 2014, she was paralyzed under the neck.
Today she can only move her left hand and feet and toes. She spends almost all her time in bed, a fan breathes for her.
When the families munched on Halloween treats in McKenzie’s home, they talked about their disappointment in the CDC. The mothers say that the federal agency should do a better job and let acute recipients know about the signs of AFM.
The women who help a To run a Facebook group for hundreds of parents whose children have the disease, says that even today, six years after the first set of cases, emergency services often send children home when they have signs of AFM, explaining paralysis to a pinch nerve or any other cause.
LeMay Axton said it happened to her grandchild, Cambria Tate, when she was 2 years old Now 4 she walks around in a wheelchair or shoots around the floor.
She said she always wonder if Cambria would have more mobility if her AFM had been detained earlier. She wondered why it was not, given that Cambria became ill in 2016, four years after the first cluster of cases by AFM.
“Looking back now I think of myself” why did not they know? Why do not they realize? Why did not they see such a thing? “She said.
She said the CDC should reach a hospital with specific instructions on signs of AFM, like weak limbs and hanging face and what to do.
” Come on, it’s 2018. need to be taken up, “she said.
Although CDC has not reached a hospital directly on AFM, it has been possible to provide health departments and other agencies.
In 2014, in 2016 and again this year, CDC Health Care Departments, with an example of a letter that they could send to healthcare providers describing symptoms of AFM.
The federal agency also sent AFM information to more than 6000 professionals at local, state and federal agencies. instructions on how to send laboratory samples to CDC for testing.
The Facebook group parents also criticized CDC to be in contact with them and other AFM affected families.
Parents say they have said mlat data about hundreds of children with the disease and have offered to divide it with the CDC, but once they have arrived at the agency they receive a letter letter that thank them for their interest.
Messonnier, the CDC doctor, the parents’ voices are “very important”.
“For other diseases I’m working on, we definitely engage with the advocacy groups,” she said. “I guess I did not know about this Facebook group.”
CNN interviewed four doctors who served as medical advisor to CDC at AFM who shared mothers concerns and have several other issues with their own.
Doctors want it to be required that cases of AFM be reported to CDC, which is required for many other diseases.
“To get to the bottom of causal relationship, we need to start with a simple account of how many cases there are,” says Dr. Benjamin Greenberg, Associate Professor of Neurology at UT Southwestern Medical Center in Dallas. “We do not know how many cases are out there, and that’s just wrong.”
Messonnier said that such mandatory reporting is considered but that the state council and territorial epidemiologists make that decision, not the CDC.  Twice, once in 2015 and once in 2017, it decided that AFM did not need to be reported nationally. CDC consented.
The CDC advisors interviewed by CNN say that the agency has been slow to narrow down on enterovirus as the most likely sin for AFM and, instead, still seriously considering other causes.
“This is a mystery so far, and we have not solved it yet, so we have to think largely,” said Messonnier at the press conference this month.
But the four medical advisors said that it is reasonable to focus on enterovirus. Firstly, clusters of cases have occurred during the enterovirus season, which is late summer and fall. Secondly, many of the children had symptoms of an enterovirus infection. Third, many patients tested positive for an enterovirus, and these advisors believe that more patients had the virus but were not tested for it, or the test was done late to retrieve it. Fourth, when researchers infect mice with a certain enterovirus, the animals developed paralysis.
About CDC focused on enterovirus, customer it led to a treatment or a vaccine more quickly according to the medical advisors interviewed by CNN.
“CDC really seems to be synchronized with the conclusions reached by most researchers. We feel we are not listening, “says Van Haren, Stanford Researcher. “We do not understand how CDC has come to where they are.”
Messonnier said that although enterovirus can cause AFM, it is not clear that they are crucial role. What gives uncertainty, she says, is that the virus has not been found in the patient’s cerebrospinal fluid.
“AFM is a destructive disease in the neurological system. If this virus caused this injury, we would expect to find the virus in the spinal fluid of most of these patients, and we are not,” she told CNN. We can not explain these three diseases in [2014, 2016 and 2018] of enterovirus, and the way such a discriminatory researcher would do, we try to think broader and make sure we do not miss anything. “ But according to the CDC is detection of poliovirus in cerebrospinal fluid in patients “unusual.” The doctors interviewed by CNN believe that enterovirus can follow the same pattern.
The CDC advisors also said they wished the agency did more to coordinate efforts around the country to find the best treatment for children with AFM. While some hospitals share their treatment results with each other, there is no systematic, national method for doing that.
“We try to systematically collect in our data so we can become smarter over time, “says Greenberg, the child-specific neurologist in Dallas. “We are looking for public health professionals to help us here.”
CDC plans to meet next week with medical experts to discuss treatment considerations, says Messonnier.
The agency’s medical advisor says they hope the meeting will be
“The doctors are on the front line, and what we see is really the heart: The children are healthy one day and are really deeply disabled in the following,” says Van Haren. “That’s what frustrates and hurts and pains so many of us.”