Two years ago, Manny Psihountas ran into his friend Zee Pinkerton in the hallways of Olathe Northwest High School. The two seniors had a conversation that still sticks with Psihountas.
“He was like, ‘I think I’m sick.’ I said, ‘You should go home,’ ” Psihountas said. “And he was like, ‘No dude, I think something is really, really wrong with me.’ ”
Days later, school officials made a stunning announcement: An unnamed student had active tuberculosis, and the county and state health departments would be coming to the school to determine who else had been exposed to it.
Pinkerton, 21, was that student.
For months, he battled the potentially fatal disease that causes feverish coughing, weight loss and night sweats, while students and staff at Olathe Northwest lined up to see if they had been infected. Pinkerton beat tuberculosis and has since become an advocate against the disease, meeting with members of Congress and the Centers for Disease Control and Prevention to talk about vaccine research, testing protocols and the need for new drugs.
He’s now telling his story to the media for the first time, to raise awareness about tuberculosis.
“TB is not only an international problem,” Pinkerton said. “It’s a domestic problem, too.”
Tuberculosis is a contagious lung ailment that spreads through saliva droplets coughed or sneezed into the air by a person with active tuberculosis disease. It cannot be spread when latent.
It’s rare in the United States — about three cases for every 100,000 people annually. But it’s common throughout most of the world, occurs in both immigrants and native-born residents of the United States and, with the advent of new drug-resistant strains, it can be extremely dangerous and expensive to treat.
Pinkerton spent months quarantined at home on medication while officials tested hundreds of people at Olathe Northwest and dozens of people outside the school who also had contact with him. They treated at least 40 people for latent tuberculosis, and efforts to contain the disease became a national news story.
Pinkerton believes he was exposed to the illness in Ethiopia, where he lived with his grandmother before he was adopted and brought to the United States in 2007. Tuberculosis is considered highly endemic there.
He had a skin test upon entering the United States that came back negative but has come to believe the test failed.
Michael Lauzardo, a tuberculosis expert at the University of Florida’s Emerging Pathogens Institute, said that’s very possible.
“That’s not an uncommon scenario,” Lauzardo said. “There are a lot of limitations with the skin test, not only with the test itself but also how it’s interpreted.”
A blood test is more accurate and is required for all international students who come to the University of Kansas.
But Lauzardo said screening everyone who comes into the country isn’t realistic, and tuberculosis isn’t just carried into the United States from abroad, anyway.
It also spreads in congregate settings like nursing homes and prisons where people are either medically fragile or have limited access to health care. It’s a serious threat to people with HIV, and according to the Kansas Department of Health and Environment, the rate of tuberculosis among people with diabetes in the state is increasing.
“Thinking, ‘Well, we don’t have that here, that’s another person’s disease,’ is just not realistic,” Lauzardo said. “...The lay public just needs to know, enlightened self-interest dictates no matter where you are on the political spectrum, it makes sense to invest in TB and public health.”
According to the Kansas Department of Health and Environment, there were 39 active tuberculosis cases statewide last year. Eighty-two percent of them were in foreign-born residents, but half of those had been in the U.S. for more than 10 years.
Pinkerton believes he carried the tuberculosis bacteria, in latent form, for years as he adjusted to his new life in the U.S. He learned to speak perfect English. He made friends. He played football and basketball and ran track. Then, as he was finishing his last semester of high school, he became one of the 5 to 10 percent of latent TB carriers who become actively infected.
He was recovering from knee surgery at the time, so he already was not quite feeling like himself. Then he started coughing, losing weight and sweating at night. He spiked fevers. He went to a doctor, but she could not figure out what was wrong with him. So he kept going to school.
“I was active for about two or three weeks, and I was spreading it to a lot of people and didn’t know it,” Pinkerton said. “If I knew I had TB, I mean, I would have stayed at home.”
Lauzardo said misdiagnosing patients who have tuberculosis is common in the United States, because medical providers don’t see it much and the symptoms are nonspecific. He said it’s important for doctors to “think TB” especially when young people like Pinkerton present with those symptoms and have a prior exposure to an area where the disease is endemic. The blood test can easily rule it out, he said.
In Pinkerton’s case, visits to multiple nurses and doctors led to a chest X-ray and then a blood test that confirmed TB and set off the rush of activity at Olathe Northwest.
Those who tested positive for latent TB were given a course of medications that are relatively easy to tolerate.
“I didn’t end up having it,” Psihountas said. But “everyone I knew, all my friends, ended up having the inactive disease.”
None except Pinkerton got active TB.
Pinkerton was put on a six-month course of medications with side effects that included depression, loss of appetite and tingling in his extremities. He says he was lucky. Through his advocacy with a group called We Are TB, he met other survivors who had the drug-resistant version of the illness and had to take harsher medications.
“One of my friends, he lost his hearing because of the medications he was taking,” Pinkerton said. “You have to pay the price for it if you want to live.”
Pinkerton’s spit was sent to the Kansas Department of Health and Environment in Topeka every day to be tested. After two months, he passed the test on three consecutive days and was deemed no longer contagious.
His name had not been made public in any reports about tuberculosis at Olathe Northwest. But it was not a secret around the school.
“They knew right away who it was,” Pinkerton said. “It didn’t take them too long. But thankfully, I had a good support system with my friends, so me going back wasn’t a problem.”
Psihountas said it “was a crazy time” but did not affect Pinkerton’s standing at school.
“No one held it against him, obviously,” Psihountas said. “We just really wanted to make sure he was all right, ’cause that’s not something to play around with.”
Pinkerton is now a student at Johnson County Community College. He’s planning to attend the University of Missouri-Kansas City and is considering studying public health.
He and other tuberculosis survivors are pushing the federal government to continue funding research for new medications that can stay ahead of the drug-resistant bacteria with fewer side effects. They’re also pushing for a vaccine to be developed.
Psihountas said he’s not surprised by his friend’s response to the illness.
“Zee is the perfect guy to not only power through that … but also help others try and get through it as well,” Psihountas said. “He’s so selfless.”