STILLWATER, Minn.-A new drug used to treat people with the rare brain-eating amoeba that killed two Washington County children and was originally thought to be the cause of death of an Alexandria boy more than a year ago is prompting the state health department to change the rules about which communicable diseases need to be reported.
The drug, called miltefosine, has saved the lives of people exposed to Naegleria fowleri, but it is not readily available at most hospitals, said Trisha Robinson, an epidemiologist and supervisor of the health department's waterborne diseases unit.
The potentially lifesaving drug means immediate notification by medical professionals to health department officials is key, Robinson said.
Once notified, the state health department can work with the Centers for Disease Control "to make sure to get any potential treatment out to providers as quickly as possible," Robinson said. "That isn't something that they most likely would be able to do as well on their own; we can help arrange facilities getting (the drug) if we have a suspected case."
Miltefosine has been proven to be effective in recent cases of Naegleria fowleri when used in conjunction with modified treatment and management of the patient, Robinson said.
The state health department wants to revise the Minnesota Communicable Disease Reporting Rules to include "free-living amebic infection" as an immediately reportable disease. The rule-modification proposal will be heard by an administrative law judge later this month.
"We want to work with reporting providers to make sure that the patient management is taken care of, but also to address any potential public health risk," Robinson said.
There have been two confirmed Naegleria fowleri infections in Minnesota. Jack Ariola Erenberg, 9, died in 2012 of primary amoebic meningoencephalitis, a central nervous system disease caused by Naegleria fowleri, after swimming in Lily Lake in Stillwater. His death came two years after Annie Bahneman, 7, of Stillwater died of the same disease after swimming in the same lake.
The parasite, commonly found in warm freshwater and soil, enters swimmers through their noses and causes a severe brain infection. It can be found in waters worldwide.
The beach at Lily Lake has been closed since August 2012.
In 2013, city crews posted warning signs - three on the beach, one at the boat landing and another near the pumping station. The signs' language is strong: "Caution. Swimming advisory. Two people have developed fatal Naegleria fowleri infections after swimming in this lake."
The 2010 and 2012 cases were reported to the Minnesota Department of Health even though free-living amoebic infection was not yet specified in the communicable-disease reporting rules. "It does fall under an unusual occurrence of a disease, and those are always reportable," Robinson said. "Were a provider to see something unusual or something that we wouldn't necessarily expect to have, then those are reportable as well."
In 2015, it was thought that Hunter Boutain of Alexandria contracted the amoeba swimming in a central Minnesota lake. However, it was later determined he instead had streptococcal meningoencephalitis, a more common bacterial meningitis that he was more susceptible to because of a skull fracture from a skateboarding accident. That caused inflammation in the lining of his brain with similar symptoms to the rare amoeba condition.
The suspected diagnosis of amoeba in July of 2015 sent a chill down the spines of lake country people not only in Minnesota, but worldwide.
There were more than 27,000 articles that appeared online and in newspapers across the world about Hunter's death.
Robinson said a national push to make free-living amoebic infection a nationally notifiable communicable disease has not been successful. "We wholeheartedly hope that that will one day be the case," she said.
Washington County health officials support the proposed rule change, said Lowell Johnson, director of the county's department of public health and environment. "We're firm believers that if you are required to go and look for something, you may be more likely to find it," he said.
County public health officials this summer sent a health advisory to emergency rooms and urgent-care sites to increase awareness of the possibility of primary amoebic meningoencephalitis in patients presenting with meningitis or encephalitis-like symptoms, Johnson said.
"We wanted to make sure that they were reminded to not rule this out quickly," Johnson said. "There have been lives saved with some of the new trial drugs, but it is really dependent on early diagnosis and early treatment. The position we're working from now is it's here in our county and in Minnesota, so we have to be telling people and communicating the risk it presents."
County officials agreed in 2011 to undergo four years of testing for the Centers for Disease Control; 10 lakes in the county were tested.
In 2011, the amoeba was found in Big Carnelian, Big Marine, Demontreville, Lake Elmo, Little Carnelian and Lily. In 2012, the amoeba was found in Lily Lake.
None of the lakes tested positive in 2013 or 2014.