Florida is a hot spot for a stubborn lung disease akin to tuberculosis
Clearing land, cutting down trees and mulching at her newly purchased, overgrown property in Fort Myers is how Myra Mendible believes she became infected with a lung-attacking environmental pathogen known as NTM, or nontuberculosis mycobacteria.
“And I'd be out there in my little tractor, you know, dust flying everywhere, and never in a million years would I have thought that I needed to be wearing an N95 mask to do this kind of thing," said Mendible, a professor of literature at Florida Gulf Coast University.
She was in her mid-60s and felt strong and healthy until sudden, sharp pains in her side sent to the urgent care. There was an X-ray, then a CT scan, then a referral to a pulmonologist. At first, she feared it was lung cancer.
The diagnosis was pulmonary NTM disease. She took five different antibiotics for 18 months, and embarked on an exhausting daily routine of trying to cough up sputum and clear her airways in the hopes of fending off the chronic disease.
"I start shaking, I get cold, my heart races, my husband comes and puts a blanket around me. You know, it's like, I have to recover from it."
Mendible improved for awhile.
“But a year and a half later, I had the pain again, the coughing, and had another CT scan. And once again, they found that it was increasing again. So, it's very, very difficult to get rid of once you have it. It may never be cured,” she said.
Not only is the disease tough to treat, but NTM cases are on the rise — and have been for years — in the United States and globally.
NTM bacterial infections of the lungs and skin are particularly common in Florida, Hawaii, California and the Gulf states.
The bacteria thrive in the soil and water of warm environments. With about 200 different strains, NTM bacteria are related to the kinds that cause ancient diseases like tuberculosis and leprosy.
NTM lung disease is usually not contagious from person to person as TB is — except in people with cystic fibrosis.
NTM causes symptoms that are similar to TB, such as weakness, coughing and sometimes coughing up blood — as well as night sweats and fevers.
While TB was reported in fewer than 8,000 people in the United States last year, NTM is estimated to affect 200,000 people nationwide, according to Max Salfinger, a retired public health professor at the University of South Florida and collaborating professor in the infectious diseases division at the USF Morsani College of Medicine.
“Florida is one of the hotspots,” said Salfinger, who has studied NTM for years and previously led a state health department lab in Florida.
That’s due, in part, to the state’s large population of seniors, Salfinger said. While most people are not vulnerable to lung infection by NTM, those who are sickened by it tend to be older and have prior lung damage, he added.
If given the choice between getting sick with multidrug resistant TB or the strain of NTM known as abscessus, which is common in Florida, Salfinger said: "I take multidrug resistant TB, because that is curable; the NTM pulmonary disease is not curable."
Last year, a study on NTM cases at Tampa General Hospital described Florida as having "an extremely high incidence and prevalence of NTM disease."
A greater understanding of NTM's presence in the local environment is needed, said study co-author Anthony Cannella, an infectious disease doctor at the USF Morsani College of Medicine.
"What probably needs to happen is a soil and water survey of the entire state," Cannella said.
In 2019, the Florida lawmakers agreed to fund the state Department of Health with $519,000 for NTM testing and surveillance, but newly elected Gov. Ron DeSantis vetoed that line item in the budget.
WUSF reached out to DeSantis' spokeswoman to ask why the governor vetoed the funding, but she did not respond by deadline, other than saying via email: "as you know, the governor vetoes many line items in every proposed budget from the Legislature."
Asked about Florida's plan for tracking NTM, Jeremy Redfern, a spokesman for the state Department of Health, said "Florida’s environment happens to be ideal for NTM growth," and that "NTM are common in Florida, but NTM is something that falls into the realm of clinical practice more so than public health."
He added that the health department "works with the NIH (National Institutes of Health) and commercial labs to get a better understanding of NTM, and the impact NTM has on clinical practice. A meeting with statewide partners is in the planning stages, as the original plans were delayed due to COVID-19."
One of the reasons so little is known about NTM is it’s not a nationally notifiable infection, like hepatitis A, measles or coronavirus, so when someone is diagnosed, it doesn't get reported to public health authorities.
Eleven states do some tracking of it, but Florida isn't one of them.
Just how many cases there are, and where, is also a mystery, because NTM is not among the 120 nationally notifiable diseases like coronavirus, e.coli, measles or hepatitis A, according to the Centers for Disease Control and Prevention.
Experts say making NTM a nationally notifiable disease would help efforts to track and prevent it. More funding to uncover where the bacteria are in Florida would also help.
NTM can grow in indoor plumbing, exposing people in the shower, in the hot tub, in swimming pools and even in hospitals. Chlorination in water doesn't kill it.
"We should continue research on what are the specific environmental conditions? And how can we better know, detect and report it, and how can we better treat it?" said Rebecca Prevots, chief of the epidemiology and population studies unit within the Division of Intramural Research at the National Institute of Allergy and Infectious Diseases (NIAID).
Prevots used Medicare data to publish the first major study on NTM prevalence in 2015 — and found about 180,000 people nationwide with NTM — and cases rising at a rate of 8% a year, costing the nation $1.7 billion annually.
"There are very few diseases that are increasing at 8% per year. So, that's quite dramatic," said Charles Daley, chief of the division of mycobacterial and respiratory infections at National Jewish Health in Denver.
National Jewish Health opened in the late 1800s as a sanatorium for tuberculosis patients. Over the years, “as TB went down, NTM started going up." Daley said.
Daley says most scientists agree that NTM is at least 10 times more common, and probably far more.
"We just evolved from TB to other mycobacteria over time. And so our wards and clinics that used to be filled with TB and drug-resistant TB are now filled with NTM patients."
Daley said about a quarter of the patients at National Jewish Health are from Florida.
"Unfortunately, Florida is usually in the top two. In terms of prevalence: Hawaii and Florida."
A number of factors could be leading to the rise in cases. Among them: a shift from copper pipes to thermoplastic Polyvinyl Chloride (PVC), which some research shows can be more hospitable to NTM bacteria. Also, hot water heaters aren't kept as hot as they used to be to avoid scalding. But those higher temperatures would kill off NTM.
Not only are cases rising, but NTM can be harder to manage than TB and harder to cure. Doctors are struggling to keep up.
"Oh, just the number of patients that we're seeing, and that everybody's seeing. I mean, almost every major university or big hospital is starting an NTM clinic. They're just — and if you talk to docs, they're like, they're overwhelmed by these cases," Daley said.
The good news, Daley says, is there is progress on the treatment. New and repurposed drugs are in the pipeline that could help patients beat the disease.
The CDC is also studying ways to improve nationwide reporting of NTM through a pilot program in some states. But Florida is not among them.
When diagnosed with pulmonary NTM, patients are often told they may not die of it, but they may die with it.
Amy Leitman's stepmother, Fern, took antibiotics for 18 years and had an operation to remove part of her lung. She died at 68 of kidney failure related to the lengthy treatment.
"She met a lot of other patients that were like her; they were looking for information on this disease. They couldn't find it. They were scared," said Leitman.
About 20 years ago, Fern and her husband started a nonprofit called NTM Info, which Amy runs from an office in Miami. It includes an online forum for patients.
"There are over 700 conversations taking place in there now. It's really busy. Patients are really active in there talking to each other, answering questions, asking questions," she said.
Treatments can be long and complicated, and side effects numerous.
"They're notoriously difficult to treat. They're not the usual antibiotic course of five to seven days for an infection; we're talking months to sometimes years," said Cannella.
Symptoms are so vague that patients may be sick for a long time before they figure out why, he added.
"It could be months to years where people progressively get worse with their cough, then they'll start to have some shortness of breath when they're doing exertional activities. And then sometimes they start having fevers and chills and night sweats, and even weight loss, not unlike you would with tuberculosis."
That was the case for Irene Press, a 75-year-old retired reading specialist. She doesn't know how she got infected. Only that she had repeated bouts of pneumonia for years before she was finally diagnosed in 2020.
"I'm an avid ballroom dancer. After I was diagnosed, my lungs were in such poor condition that I could only get halfway around the dance floor."
Since then, her treatment has been working. She's still taking three medications to try and kill the bacteria in her lungs. She may have to take them for life to keep the infection at bay.
But Press is finding ways to live with the disease. She has found that dancing helps clear her lungs — and boosts her mood. She rests during the day, so she'll have enough energy to dance later on.
On a recent Friday evening in Sarasota, she wore a glittering blue dress and heels, and did not hesitate when her husband, Don, asked: "You want to do a tango?"
"Sure!" she said.
And off they went, swaying and pausing together in time, across the ballroom floor.
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