A woman whose mother died last month in Missouri while carrying the Bourbon virus says she’s frustrated that the Centers for Disease Control and Prevention has made no progress in treating the tick-borne illness. The virus was first identified in a patient at the University of Kansas Hospital in 2014.
In an interview Sunday, Amie May said her family watched as Tamela Wilson’s condition deteriorated over nearly a month at Barnes-Jewish Hospital in St. Louis. Doctors were powerless to stop the virus, which was confirmed through CDC blood testing.
“Every day I went up to see her, she was a little worse from the day before,” May said. “Nothing they could do was working. She just wasn’t getting any better.”
Wilson, 58, died June 23. She was from Sullivan, in eastern Missouri, and worked at Meramec State Park.
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“She was an avid camper,” May said. “She liked just everything to do with the outdoors: bonfires at night, s’mores and float trips and hiking.”
May, a registered nurse, said she didn’t think any other hospital could have saved her mother, because there is no known treatment for Bourbon virus.
The virus was named for a farmer from Bourbon County in southeast Kansas who died of the disease in 2014. He was the first known victim, but Dana Hawkinson, the infectious disease doctor at KU who treated him, said it’s possible the virus has been infecting people for years and was just never identified.
“We still don’t understand the full spectrum of disease,” Hawkinson said, “but we do suspect there are milder forms or very severe forms.”
The CDC website says only that “a limited number of Bourbon virus disease cases have been identified in the Midwest and southern United States.”
Even though the CDC confirmed that Wilson had the virus, May said it hasn’t yet been confirmed as the cause of her mother’s death. She also had non-Hodgkin lymphoma, but May said she’d been treated successfully for that since 2012.
The respiratory failure that took her life didn’t begin until she was admitted to Barnes in late May, after being bitten by a tick.
May said Barnes staff initially suspected other, more well-known tick-borne illnesses and tried multiple antibiotics. When testing confirmed Bourbon virus, they were nonplussed.
“The hospitalist came in and she said, ‘Well, we’re looking it up online just like you,’ ” May said. “ ‘We don’t know any more than you do.’ ”
Wilson died 12 days after the first Bourbon virus test results came back positive and one day after a second test confirmed the first.
“One thing that I think needs to be adjusted by the CDC are the requirements that have to be met before you can even get the test,” May said. “There are strict requirements, like the platelets have to be low and the white blood cell count has to be low, and you have to have all these other symptoms before the CDC will even test for the Bourbon virus.”
Lee Norman, who recently resigned as KU Hospital’s chief medical officer to take a post as a U.S. Army command surgeon in the Middle East, said months ago that the CDC’s strict testing protocol was potentially preventing medical providers from identifying more cases.
Hawkinson said he didn’t blame the CDC, though. The accuracy of the test is still being evaluated, he said, and the agency has limited resources and is dealing with new public health threats like Zika virus.
But he said at some point, he would like to see a “prevalence study” that tests a large population of a given geographic area to see how many people have Bourbon virus antibodies in their blood. That would give researchers some sense of how many people carry it without serious symptoms, and whether underlying conditions like Wilson’s lymphoma or the treatments for it are risk factors.
“At this point, we still need to really focus on the test itself so we know we have an accurate test,” Hawkinson said.
Meanwhile, May said that she wants the public to know who her mother was and to know more about the virus that may have killed her.
“It takes over and does its thing,” May said, “and at this point, there’s just no stopping it.”