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(CNN) – Parents of children with horrible polio-like illnesses blame the Centers for Disease Control for hiding the deaths of two children with polio.
Parents say that by not publicly recognizing both deaths, the agency intentionally downplays the severity of flaccid acute myelitis (AFM), a disease that paralyzes healthy children in a matter of hours.
"I think they're just messing it all up," said Katie Bustamante, whose son, Alex, died in May. "It eliminates my confidence in the CDC."
Their charges follow a wave of criticism from parents of children with AFM and some of the CDC's medical advisors. In a recent camera interview with CNN, a group of parents gave the agency an "F" for its management of the outbreak.
A CDC official said she could not comment directly on the boys' case, but CDC health care doctors reported a "delay" in AFM reporting.
"I think we want to catch up on the backlog," said Dr. Anne Schuchat, CDC's Senior Deputy Director, a 30-year-old CDC veteran and a retired Rear Admiral of the US Public Health Service. "Even last week, we increased the number of disease detectives on the program."
Schuchat, who has twice been acting director of the agency and has contributed to the fight against pandemic influenza, SARS and anthrax, said she was sorry to say that she had been diagnosed with the disease. learn that parents think the CDC is hiding something.
"I certainly want to make sure that the information we have is shared as quickly as possible," Schuchat said. "We want to understand everything we need about this disease and the best way to diagnose it, treat it and give families enough information about what to expect. I think it's very difficult when your child has had a pretty traumatic experience of not even knowing the prognosis. "
She added that there was no simple laboratory test for AFM and that CDC detectives should therefore carefully review medical records.
Twenty-six states have confirmed cases of AFD and eleven other states have possible cases, according to a survey conducted last week by CNN from state health departments. This year, there have been 80 confirmed cases of the disease and 219 cases are currently under investigation, according to the latest data from the CDC.
On the AFM surveillance web page, the CDC does not mention any AFM deaths. At a press conference held last month, Ms. Nancy Messonnier, director of the CDC's National Center for Immunization and Respiratory Diseases, said the agency was aware of a death. in 2017, but has not mentioned any deaths this year, even at the request of it. a journalist.
Chris and Robin Roberts lost their five-year-old son Carter in September after a two-year battle with the AFM. CNN saw excerpts from Carter and Alex's medical records showing that their doctors had diagnosed them with an AFM. In Carter's case, doctors from three medical centers – Virginia Commonwealth University, Johns Hopkins, and Boston Children's Hospital – diagnosed him.
The CDC has put in place a system in which doctors report cases of MFA to their state health departments, which in turn report cases to the CDC.
Two pediatric neurologists who act as medical advisors to the CDC about the AFM believe that the agency could be quicker in reviewing and reporting cases and deaths.
"It should not take so long to confirm these cases," said Dr. Keith Van Haren, an assistant professor of neurology at the Stanford University School of Medicine and one of the CDC's advisors. This kind of turnaround time for mortality reviews is a symptom of a disconnection at the CDC. "
Carter's parents agree.
"They do a damn job measuring that, excuse my French," said his mother, Robin, a health informatics specialist.
"Mom, mom, help me"
On July 29, 2016, Carter vomited after dinner. The next day he had a fever of 99 degrees but felt good enough to eat and drink.
It's just a virus, thought her parents, who have two older children. This was nothing alarming.
The next morning Robin entered his son's room and found him on the floor.
"Mom, mom, help me," remembers her mother.
Robin remembers trying to help Carter get up. His head sank backwards. He could not use his right arm. She picked up her son and took her to the emergency room.
In a few days, Carter could not move anything under his neck. It was put under ventilation and never went out.
For the next two years, his family and nurses did everything for him. They fed him. They scratched his nose when he had an itch. All day and all night, they would turn him back every 90 minutes so that he would not suffer from bed sores.
Carter was not discouraged by his illness. He could read books at the age of four. He explained to his father how to build Lego characters and medieval swords out of aluminum foil.
Carter went to kindergarten and, in August of this year, started kindergarten. He came home from day one, beaming around the circle and a pretty little girl in her class wearing a rainbow dress.
A few weeks later, on September 22, he had trouble breathing. Robin was alone at home and called an ambulance. His last words were: "Mom, I'm fine."
Today, Carter's ashes sit in an urn in his family's living room.
A doctor wants answers
Carter's parents and Alex's parents explain that they are not sure that the CDC has ever accepted their sons as official cases of the AFM when they became ill in 2016.
Alex's mother says her doctor told him he knew about her death in the California Department of Public Health, but she does not know what happened afterwards.
In the Carter case, his neurologist, Dr. Sanjai Rao, told CNN that he had completed documents on the CDC website and that, following CDC instructions, he had sent the documents, the laboratory samples and the results of the MRI at the Virginia Department of Health.
An epidemiologist confirmed that Carter's information had been sent to the CDC, according to Rao, an assistant professor of pediatric neurology at Richmond Children's Hospital at Virginia Commonwealth University.
Doctors and parents say that part of their frustration is that they have not received a response from the CDC about cases and deaths.
Rao said he contacted a scientist from the AFM team at the CDC, but never heard him.
"I would like answers," said Rao, an assistant professor of pediatric neurology at Richmond Children's Hospital at Virginia Commonwealth University.
His voice stifles emotion when he talks about Carter, whom he has been busy for over two years. "I want to know that the process benefits future cases of children with AFM," he said.
Other experts are in agreement with Rao. "We want specific numbers," said Dr. Kenneth Tyler, professor and director of the Department of Neurology at the University of Colorado's School of Medicine, and advisor to the CDC on AFM.
A precise count could help answer questions, he said. Where are the cases? How old are the patients? They are males or females? "It helps us understand causality," he said.
"The CDC is instead of trying to understand the long-term [consequences]and one death is really important, "said Van Haren, a pediatric neurologist at Stanford and CDC advisor.
Schuchat said the CDC is working hard on AFM. "We work around the clock and we take it very seriously," she said.
She added that the agency had established a case definition for the AFM, performed laboratory tests on samples sent to them by state health departments and worked with external experts to publish information in medical journals.
A spokeswoman for the CDC said that during the past two weeks, the agency had added 14 agents to epidemiological intelligence services – called "disease detectives" – to help review reports of the disease. 39, AFM filed by state health departments.
An enterprising parent
On June 10, 2017, about ten months after Carter became ill, Robin contacted the CDC.
She was angry.
"I know it may seem insignificant, at the request of a mother educated at the clinic, but you do a disservice to these children and their families not to educate the doctors further or to require surveillance similar to that Zika, "she wrote to an e-mail address on the CDC website.
"Do what is right by public health standards and gather more data," she continued. "Or, God forbid, if you know more than what you say online, please share it with the public and those patients. My son was vaccinated in time, we observed very good hygiene precautions and we became overnight a child dependent on ventilation.
She received an answer two days later.
"We are sorry to hear about your son," he said. "Your comments have been forwarded to the appropriate CDC program for information. They will contact you directly if they have any questions. "
She has never heard of the CDC again.
CNN told Robin's story to the CDC.
"I'm sorry to hear that, it's very disturbing," Schuchat told CNN. "We try to connect better with families, and it's so important to listen to them."
Several other parents told CNN that their emails to the CDC also went unanswered. Some of these emails offered help to the CDC from the Facebook Family Group, which collected medical information on hundreds of AFM patients.
Messonnier, the CDC doctor, told CNN last month that she had never heard of the Facebook group.
Last week, another enterprising parent received a response from the federal agency. Four-year-old Joey Wilcox of Herndon, Virginia, was diagnosed with AFM in September. His father, Jeremy, works with government agencies as part of his work in a high-tech consulting firm. Wilcox knows how to find – and find – officials.
He was aiming high. On line, he found Schuchat's email address and asked him to meet him and other relatives. He says that she responded within 15 minutes.
He thinks one of the reasons for this quick response is the "F" that parents gave to the CDC.
It was a pivotal moment, "he said of CNN's story.
More than a dozen families are scheduled to meet Schuchat on Tuesday in Washington.
The parents of Carter Roberts and Alex Bustamante will be among them.
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