Danger at home: Rare form of TB comes to U.S.

First U.S. case of extremely drug-resistant strain of tuberculosis diagnosed 

Editor's note: Once curable diseases such as tuberculosis and malaria are rapidly mutating into aggressive strains that resist drugs. The reason: The misuse of the very drugs that were supposed to save us has built up drug resistance worldwide. First of a five-part series.

Oswaldo Juarez looks out of the window from his room at the A.G. Holley State Hospital on June 4 in Lantana, Fla. Shortly after coming to the United States to study English at age 19, Juarez was diagnosed with extremely drug-resistant tuberculosis, the first case ever seen in this country. He was treated at a sanitarium for nearly two years before being discharged.

LANTANA, Fla. - It started with a cough, an autumn hack that refused to go away.

Then came the fevers. They bathed and chilled the skinny frame of Oswaldo Juarez, a 19-year-old Peruvian visiting the United States to study English. His lungs clattered, his chest tightened and he ached with every gasp. During a wheezing fit at 4 a.m., Juarez felt a warm knot rise from his throat. He ran to the bathroom sink and spewed a mouthful of blood.

I'm dying, he told himself, "because when you cough blood, it's something really bad."

It was really bad, and not just for him.

Doctors say Juarez's incessant hack was a sign of what they have both dreaded and expected for years — this country's first case of a contagious, aggressive, especially drug-resistant form of tuberculosis. The Associated Press learned of his case, which until now has not been made public, as part of a six-month look at the soaring global challenge of drug resistance.

Juarez's strain — so-called extremely drug-resistant (XXDR) TB — has never before been seen in the U.S., according to Dr. David Ashkin, one of the nation's leading experts on tuberculosis. XXDR tuberculosis is so rare that only a handful of other people in the world are thought to have had it.

"He is really the future," Ashkin said. "This is the new class that people are not really talking too much about. These are the ones we really fear because I'm not sure how we treat them."

Forty years ago, the world thought it had conquered TB and any number of other diseases through the new wonder drugs: antibiotics. U.S. Surgeon General William H. Stewart announced it was "time to close the book on infectious diseases and declare the war against pestilence won."

Today, all the leading killer infectious diseases on the planet — TB, malaria and HIV among them — are mutating at an alarming rate, hitchhiking their way in and out of countries. The reason: overuse and misuse of the very drugs that were supposed to save us.

Just as the drugs were a manmade solution to dangerous illness, the problem with them is also manmade. It is fueled worldwide by everything from counterfeit drugmakers to the unintended consequences of giving drugs to the poor without properly monitoring their treatment. Here's what the AP found:

• In Cambodia, scientists have confirmed the emergence of a new drug-resistant form of malaria, threatening the only treatment left to fight a disease that already kills 1 million people a year.
• In Africa, new and harder to treat strains of HIV are being detected in about 5 percent of new patients. HIV drug resistance rates have shot up to as high as 30 percent worldwide.
• In the U.S., drug-resistant infections killed more than 65,000 people last year — more than prostate and breast cancer combined. More than 19,000 people died from a staph infection alone that has been eliminated in Norway, where antibiotics are stringently limited.

"Drug resistance is starting to be a very big problem. In the past, people stopped worrying about TB and it came roaring back. We need to make sure that doesn't happen again," said Dr. Thomas Frieden, director of the U.S. Centers for Disease Control and Prevention, who was himself infected with tuberculosis while caring for drug-resistant patients at a New York clinic in the early '90s. "We are all connected by the air we breathe, and that is why this must be everyone's problem."

This April, the World Health Organization sounded alarms by holding its first drug-resistant TB conference in Beijing. The message was clear — the disease has already spread to all continents and is increasing rapidly. Even worse, WHO estimates only 1 percent of resistant patients received appropriate treatment last year.

"We have seen a huge upburst in resistance," said CDC epidemiologist Dr. Laurie Hicks.

Lynne Sladky / AP This photo taken July 30 shows X-rays from a tuberculosis patient at A. G. Holley State Hospital, a quarantine hospital in Lantana, Fla., that is now managing new and virulent forms of the disease.

A ‘time bomb’
Juarez' strain of TB puzzled doctors. He had never had TB before. Where did he pick it up? Had he passed it on? And could they stop it before it killed him?

At first, mainstream doctors tried to treat him. But the disease had already gnawed a golf-ball-sized hole into his right lung.

TB germs can float in the air for hours, especially in tight places with little sunlight or fresh air. So every time Juarez coughed, sneezed, laughed or talked, he could spread the deadly germs to others.

"You feel like you're killing somebody, like you could kill a lot of people. That was the worst part," he said.

Tuberculosis is the top single infectious killer of adults worldwide, and it lies dormant in one in three people, according to WHO. Of those, 10 percent will develop active TB, and about 2 million people a year will die from it.

Simple TB is simple to treat — as cheap as a $10 course of medication for six to nine months. But if treatment is stopped short, the bacteria fight back and mutate into a tougher strain. It can cost $100,000 a year or more to cure drug-resistant TB, which is described as multi-drug-resistant (MDR), extensively drug-resistant (XDR) and XXDR.

There are now about 500,000 cases of MDR tuberculosis a year worldwide. XDR tuberculosis killed 52 of the first 53 people diagnosed with it in South Africa three years ago.

Drug-resistant TB is a "time bomb," said Dr. Masae Kawamura, who heads the Francis J. Curry National Tuberculosis Center in San Francisco, "a manmade problem that is costly, deadly, debilitating, and the biggest threat to our current TB control strategies."

Juarez underwent three months of futile treatment in a Fort Lauderdale hospital. Then in December 2007 he was sent to A.G. Holley State Hospital, a 60-year-old massive building of brown concrete surrounded by a chain-link fence, just south of West Palm Beach.

"They told me my treatment was going to be two years, and I have only one chance at life," Juarez said. "They told me if I went to Peru, I'm probably going to live one month and then I'm going to die."

Holley is the nation's last-standing TB sanitarium, a quarantine hospital that is now managing new and virulent forms of the disease.

Tuberculosis has been detected in the spine of a 4,400-year-old Egyptian mummy. In the 1600s, it was known as the great white plague because it turned patients pale. In later centuries, as it ate through bodies, they called it "consumption." By 1850, an estimated 25 percent of Europeans and Americans were dying of tuberculosis, often in isolated sanatoriums like Holley where they were sent for rest and nutrition.

Then in 1944 a critically ill TB patient was given a new miracle antibiotic and immediately recovered. New drugs quickly followed. They worked so well that by the 1970s in the U.S., it was assumed the disease was a problem of the past.

Once public health officials decided TB was gone, the disease was increasingly missed or misdiagnosed. And without public funding, it made a comeback among the poor. Then immigration and travel flourished, breaking down invisible walls that had contained TB.

Drug resistance emerged worldwide. Doctors treated TB with the wrong drug combinations. Clinics ran out of drug stocks. And patients cut their treatment short when they felt better, or even shared pills with other family members.

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There are two ways to get drug-resistant TB. Most cases develop from taking medication inappropriately. But it can also be transmitted like simple TB, a cough or a sneeze.

In the 1980s, HIV and AIDS brought an even bigger resurgence of TB cases. TB remains the biggest killer of HIV patients today.

For decades, drug makers failed to develop new medicines for TB because the profits weren't there. With the emergence of resistant TB, several private drug companies have started developing new treatments, but getting an entire regimen on the market could take 24 years. In the meantime, WHO estimates each victim will infect an average of 10 to 15 others annually before they die.