This Disease Can Still Get You Quarantined For Months -- And It's On The Rise

On World Tuberculosis Day, four survivors reveal what it's like to have "airborne cancer."
Tuberculosis patient Kate O'Brien stands before cards decorating the isolation room in which she lived for over 70 days.
Tuberculosis patient Kate O'Brien stands before cards decorating the isolation room in which she lived for over 70 days.
Kate O'Brien

In August 2014, Kate O’Brien, a 34-year-old media producer from Brooklyn, found out she was expecting her second child.

She was ecstatic. But this pregnancy didn't proceed like the first. For the next few months, O'Brien had a cold she couldn't shake. She woke up in the middle of the night drenched in sweat. She wanted to blame it on her pregnancy, yet she kept losing weight.

She could barely eat. She coughed up balls of bloody mucus. Her throat burned. None of her doctors could figure out what was wrong.

A physician sent her to Mount Sinai West Hospital in Manhattan in January 2015, when, at five months pregnant, she still couldn't gain any weight.

"No one likes a skinny pregnant lady," she said.

O'Brien expected to stay at the hospital overnight. She didn’t get a chance to say goodbye to her 2-year-old, Donny, but she figured she'd be home soon.

She didn't walk out of the hospital for 75 days.

The doctors at Mount Sinai diagnosed O'Brien with infectious tuberculosis. After a few days in the intensive care unit, she was shifted to a negative-pressure isolation room, which helps contain the infected air. Signs announcing "WARNING: Infectious Disease" were affixed to the room's airtight set of double doors. And all O'Brien could think about was what this meant for her unborn baby.

The federal policy that governs medical isolation and quarantine in the U.S. applies to just a handful of diseases. Most of them, such as cholera, smallpox and the plague, are vanishingly rare in the U.S. But tuberculosis is not. In 2015, the Centers for Disease Control and Prevention recorded 9,563 new cases of TB.

That same year, for the first time since 1992, the number of tuberculosis cases in the U.S. rose, according to the CDC. Twenty-nine states and the District of Columbia reported more cases in 2015 than they did in 2014. The per-capita rate of tuberculosis cases has plateaued at three infections per 100,000 people.

"The leveling-off means that we're not moving towards TB elimination," said Dr. Philip LoBue, who runs the CDC’s Division of Tuberculosis Elimination. "It's at a low level, one of the lowest levels in the world, but our goal is to eliminate TB."

For more on the CDC's latest numbers, read here.

Contrary to popular belief in the U.S., tuberculosis is not a disease of the past. It is a global threat, one that last fall surpassed HIV/AIDS to become the No. 1 infectious killer on the planet. More than 1.5 million people die each year of the disease, which some experts call "airborne cancer" because of the way it slowly ravages its victims.

More than one-third of the world’s population is infected with the bacteria that cause tuberculosis, which is spread when a person with the active form of the disease coughs, expelling micro-droplets of saliva and mucus. Most of those infected people have immune systems that are strong enough to contain the bacteria, leaving them symptom-free and otherwise healthy. Around 13 million Americans have what's called latent TB. But approximately 5 to 10 percent of people infected with TB will develop the active, infectious form of the disease at some point in their lifetime. That means as many as 1.3 million Americans could become infectious if not treated.

People with active TB experience wracking coughs, night sweats and endless fatigue. They can’t stop losing weight, and they feel like they can’t breathe. Actively infectious patients must be isolated from the general public. Depending on their level of infection and living situation, that can be either at the hospital or in their own home.

If active TB is treated properly, over 90 percent of patients survive. But if it's not treated appropriately -- and in poor countries, it often isn't -- two-thirds of those with active TB will die.

Even in America, with some of the most advanced medical care in the world, TB patients like Kate O'Brien must suffer through long, painful treatments. The regimen for severe cases hasn't changed significantly since the 1950s. Medical experts and health care advocates are confident that, with more funding, we could not only dramatically reduce TB transmission and death in the developing world but also reduce discomfort and shorten isolation times here at home.

But so far, the money is not there.

Life In Isolation

When O'Brien's doctors said she had TB, she did a double take. This is an infectious disease that people in developing countries get, she thought. Where would she have picked it up?

She still doesn't know the answer. Doctors inquired about her travels in Malaysia five years earlier, but the strain she carried seemed to have its origins in Russia.

It is most common to catch TB from prolonged contact with a sick person or time spent in a region with a high rate of infections. Still, it is possible to catch TB through a chance encounter with an infected person -- on a plane, a crowded subway, waiting in line for coffee.

During the more than two months she spent quarantined at the hospital, O'Brien's visitors and caretakers had to wear face masks at all times. While her husband Matt visited every day, she didn't see her son in person for the full 75 days. The couple decided that making Donny put on a face mask to go see his mom wired to machines and monitors would be too much for the toddler. So she only saw him on FaceTime or Skype.

O'Brien had to remain in isolation until three consecutive tests of her saliva and mucus came back negative for TB, which would prove that the tuberculosis bacteria in her body were no longer infectious. Doctors treat the disease with an aggressive combination of antibiotics. Pregnancy made O'Brien's liver more sensitive to the drugs, prolonging her time in the hospital. She was also nervous about the effects the drugs and repeated tests could have on her unborn child and the possibility, albeit unlikely, that the baby could be born with tuberculosis.

Even after they’re deemed no longer infectious, TB patients face months and months of pills and sometimes painful injections. The drugs leave many patients weak, living in what they describe as a fog of nausea and lethargy. Daily visits from a health care worker are set up to ensure the patient sticks to the full course of medication. When the regimen is not completed, particular TB strains can become drug-resistant. As a result, the patient's illness can come back worse than before, and the community may be exposed to a version of the disease that is even harder to treat.

While O'Brien was in isolation, a steady stream of friends and family members came to see her, wearing masks and bearing cards, flowers and stories of what a dreadful winter they were having. But after spending so much time cooped up inside with just a window to view the outside world, even winter started to sound pretty darn good.

“I missed walking through snow and complaining about it,” O'Brien said. “I missed touch without reservation. ... But most of the time, I was just missing my toddler. The thing that depressed me the most was my toddler son wondering where I’d gone and thinking, 'Mommy left me.'”

O'Brien's story was familiar to other TB survivors who, like her, gathered in Denver last month for the annual meeting of the National Tuberculosis Controllers Association and the International Union Against Tuberculosis and Lung Disease. For many of them, the conference was the first time they had ever been in a room with others who understood the trauma of isolation and the stigmatization of having a highly infectious disease in America.

Not everyone in the U.S. is isolated in a hospital like O'Brien. Some TB patients are sent home to spend months confined there, waiting for tests to come back negative. States and physicians follow different isolation guidelines depending on how fast the patient is responding to therapy and whom the patient could potentially infect.

While heading home may seem preferable to the hospital, many patients see it as its own kind of prison.

Nicole Gadon Kelly, a 64-year-old former art teacher, spent six months of isolation at home in Asheville, North Carolina, lying listlessly on the couch while her body fought off tuberculosis.

“I just couldn’t stand it being so isolated," she said. "I couldn’t go outside. I couldn’t get someone to clean the house because I was too weak to do it myself. I couldn’t get spiritual advice [in person] -- anything, because you couldn’t have contact, which is what I most needed."

“If you got cancer, you could get all these things," Kelly said. "I couldn’t have anything. Nothing."

A card sent by a young relative when Nicole Gadon Kelly was in isolation. The second part of the card depicts a cured Kelly painting again.
A card sent by a young relative when Nicole Gadon Kelly was in isolation. The second part of the card depicts a cured Kelly painting again.
Lauren Weber

Issis Garcia, who was a freshman at the University of Nebraska in Kearney when she started feeling sick in 2012, stressed that the isolation wasn’t only physical.

“You just never imagine something like that happening to you," she said. "Just being sick, being in pain, being scared and alone -- it just kind of hits you: 'Oh, I’m infectious.' It’s just really depressing.”

It took three years of confusion before doctors diagnosed Garcia with a severe case of tuberculosis -- so severe that the bacteria had spread through her lungs, stomach, intestines and colon. She spent five months in isolation, going back and forth only between the hospital and her home. But the worst part for Garcia was the mental exhaustion.

“I was too sick to get on Facebook. I was too sick to type a message -- it just was not even interesting to me,” she said. “At 23 years old, you don’t expect to be trapped in your mind.”

'I Lost Two Years Of My Life'

Karim, a 35-year-old financial consultant from New York City, didn't tell most of his friends about his diagnosis a few years ago. He didn't want his last name published because most people in his professional and personal circles still don't know he had TB.

Karim spent seven months in 2013 going to doctors, trying to figure out what was causing the pain in his chest. When the answer finally came back, he learned he had a strain of multidrug-resistant tuberculosis, or MDR-TB.

Multidrug-resistant tuberculosis takes longer to treat, requires longer isolation periods and has much more severe side effects. The drugs used to treat MDR-TB can cause serious hearing loss, depression and even psychosis. They were developed not long after World War II and haven't changed much since then.

“I started taking care of TB patients 30 years ago, back when we didn’t know what caused AIDS,” said Dr. John Bernardo, a tuberculosis control officer in Boston. “Now we can stop AIDS, but I’m still treating TB patients the same way. That’s outrageous.”

Initially, Karim thought he would just power through, keep on living a (mostly) normal life. He didn't feel like having a conversation with his "hang-out buddies" about it, and besides, he couldn't go out drinking while he was on the TB drugs anyway. He tried to get other parts of his life in order, to compensate for the uncertainty he felt after his diagnosis. He proposed to his girlfriend, even though he hadn't told her he had MDR-TB.

But the months of treatment left him nauseous and exhausted. While he wasn't considered highly infectious, and thus not kept in isolation for an extended period of time, he began to self-segregate. The combination of the drugs and all the time spent alone in his apartment left him anxious and depressed.

"It’s just you and your thoughts," Karim said. "Knowing that the next morning you’ve got to take medication, and knowing you’ve got nine more months on this thing.”

Eventually his facade of normalcy crumbled. While he'd told only one close friend and his family about his diagnosis, he said he began to resent it when no one else seemed to notice what he was going through. Communication with his fiancée broke down, and they ended the engagement. He didn't tell her about the MDR-TB until recently, after he finished treatment.

Karim stressed how thankful he is to be done with that drug regimen. He thinks of that time as a black hole: “I lost two years of my life.”

'We Have A Disease We Can Cure, And We Aren't'

When TB earned the grisly title of the world's No. 1 infectious killer last fall, health care advocates hoped that at least would increase the amount of attention paid to a disease that is often forgotten. In December, the White House released a long-awaited action plan to fight the growing global health security threat that multidrug-resistant TB poses.

But less than two months after issuing that plan, the Obama administration presented a budget that once again slashed funding for international TB aid through the U.S. Agency for International Development by 19 percent, just as it had proposed in the three previous budgets.

Current funding falls about $1.4 billion short for TB treatment worldwide and about $1.3 billion short for research, according to the World Health Organization's 2015 Global Tuberculosis Report. Treating the disease and trying to stop its spread is enormously expensive, particularly in the developing world. The World Bank has estimated that TB costs some countries 4 to 7 percent of their gross domestic product.

Experts worry that if a concentrated push isn’t made to advance new drugs or develop an effective TB vaccine, this treatable, curable disease could continue to kill millions of people for years to come.

“Here we have a disease we can cure, and we aren’t,” said Dr. Eric Goosby, the U.N. ambassador for tuberculosis, in an interview with The Huffington Post. “Too many times, the political will waxes and wanes."

Kate O'Brien hopes that stories like hers can draw attention to the fact that TB is still a very real problem here in the United States. She was in Washington on Wednesday to urge lawmakers to take steps so that others dealing with the disease can receive a faster diagnosis and less traumatic treatment than she did. That treatment isn't finished yet, though it's been 14 months since she was diagnosed.

"My life would have been so different if anyone had just considered TB," O'Brien said at a Senate briefing, which was held one day before World TB Day.

Yet she considers herself lucky: She was reunited with her toddler in April 2015 and gave birth to a healthy baby boy, Jimmy, a few weeks later. Her anticipation of those two events helped her endure the days in isolation.

“There was this feeling that, no matter what happens to me, I have to get this baby out,” O'Brien said. “We both made it out.”

The effects of the disease linger, including some scarring in her lungs and a twinge of panic every time one of her kids coughs.

“I’ll take a couple of holes in my lung for my kid," she said. "I had life and death growing in me at the same time -- and life won.”

Tuberculosis survivor Kate O'Brien with Jimmy, Donny and her husband Matt on the vacation they had talked about all winter while she was in isolation.
Tuberculosis survivor Kate O'Brien with Jimmy, Donny and her husband Matt on the vacation they had talked about all winter while she was in isolation.
Kate O'Brien

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