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Investigational drug sent to hospital for brain-eating amoeba patient, CDC says

By Blake Hanson
By Blake Hanson

CHARLOTTE, N.C. — Officials with the Centers for Disease Control and Prevention sent an investigational drug to the hospital where a woman was treated for an infection from a brain-eating amoeba, a spokesperson for the agency confirmed Thursday.

Lauren Seitz, 18, died after health officials believe she was exposed to a brain-eating amoeba known as Naegleria fowleri. Her death came just days after visiting the U.S. Whitewater Center in Charlotte, and Mecklenburg County health officials are investigating where she came into contact with the amoeba. Although the drug was sent to her hospital, it's unclear if she received the treatment.

Jeremy Lewis, who lost his 7-year-old son, Kyle, to the amoeba in 2010, has led a national effort to bring the investigational treatment drug, known as miltefisone, to a network of hospitals across the country. He and his family maintain a website at http://www.kylelewisamoebaawareness.org/ to broaden awareness of the amoeba and tackle issues related to it.

On Wednesday, Lewis stood outside a Fort Worth, Texas, hospital as the medical center announced it was the first in the country to stock the drug.

"It was a very surreal moment for us. I didn't even know that they had brought the drug out to the (news) conference and I looked over and saw the box of [medication] on the podium and it was like time stood still for me," Lewis said.

Previously, hospitals that wanted the drug had to request it on a case-by-case basis from the CDC. That's a  process in which every second counts. Lewis said there are now plans to bring the drug to four additional hospitals, thus creating a network of locations from which providers can get the drug.

"[The CDC does] a great job of getting that drug out to the people that need it. Unfortunately, the problem is that by the time it's noticed what [the infection] is, or if they recognize it, it's too late. The damage has already been done," Lewis said.

Infectious disease experts told Eyewitness News the drug is in the investigational stage in part because so little research on it has been done.

"The data which we have is very minimal because this is not a very common scenario," said Dr. Anupama Neelakanta, an infectious disease specialist with Carolinas Healthcare.

Neelakanta said in the three documented cases in which a person survived the bacteria, two had received the drug. Each case study varies, however, because the scenarios sometimes involve multiple forms of medication at the same time.

Lewis said he hopes to continue expanding the network of hospitals that stock the drug. He said he has had conversations with Palmetto Health in Columbia, South Carolina, about carrying the medication.

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