The first known case of a patient with an extremely drug resistant form of tuberculosis in the US came to light recently when the Associated Press (AP) media agency reported the plight of a 21 year old Peruvian man Oswaldo Juarez, who arrived in the US two years ago to study English and then found himself spending most of that time fighting for his life as he underwent treatment after treatment to try and rid him of the highly aggressive form of TB.

The case had not been made public until now: AP reporters came across it when they were doing a six month review of the “soaring global challenge of drug resistance”, according to an Associated Press article published in the Baltimore Sun at the weekend.

Dr David Ashkin, Medical Executive Director at AG Holley State Hospital, part of the Florida Department of Health, and the hospital where Juarez spent over one and a half years in treatment, told AP that Juarez’s strain of TB was an extremely drug-resistant (XXDR) form that had never been seen before in the US.

Ashkin, one of the country’s leading experts on TB, said only a handful of cases of XXDR-TB are known to have existed in the world.

“This is the new class that people are not really talking too much about,” said Ashkin, who described Juarez’s case as “the future” of drug resistant infections like TB and other killer diseases.

“These are the ones we really fear because I’m not sure how we treat them,” he added.

Juarez first checked into a hospital in Fort Lauderdale where he underwent three months of treatment with little effect. Then in December 2007 he was sent to and checked in voluntarily at AG Holley, just south of West Palm Beach in Florida, described by the AP as “the nation’s last-standing TB sanitarium, a quarantine hospital that is now managing new and virulent forms of the disease”.

By then the disease had made a big hole the size of a golf ball in his right lung.

Juarez reportedly had a tough time psychologically as well as physically. TB spreads through droplets when people cough or sneeze, and because he had such a highly resistant form, the hospital could not afford for him to come into contact with many other people.

He had to wear a mask when he left his room, and his family was not allowed to visit him. He said he missed them terribly, especially his mother and this made him very depressed. He got into fights with other patients, and punched holes in his wall out of frustration. Even though he did make friends with some new patients, they got cured and left, while he remained for many more months, uncertain as to his fate.

At first his treatment was like chemotherapy: he was given drugs intravenously three times a day, and took 30 pills, some of which turned his skin dark brown. He often had to take them several times because they made him nauseous and he would vomit them back up again.

Ashkin said when they first started treating Juarez they had to try everything, including “the kitchen sink”. He and his colleagues gave Juarez high doses of drugs, including some not normally used to treat TB.

Ashkin described their approach as “cutting edge” and “risky”, because there were no text books or articles to guide them. He said in 17 years of dealing with complex TB cases, including in the brain and spine, he had never come across such a resistant form.

Altogether Juarez spent 19 months at AG Holley. He told the AP that there were days when he thought he would never get better:

But the dark hole in his lung revealed on the CAT scans eventually went, and now only a small white scar remains.

Juarez said the doctors told him the TB is gone, but he said he knows it can’t be cured:

“The TB can come back. I saw people who came back to the hospital twice and some of them died,” he said, “so it’s very scary”.

Ashkin said it must have cost about half a million dollars to treat Juarez, and some might question why the State of Florida should spend so much money treating someone who was not an American citizen. But Ashkin said that was not the issue because when you treat one person you are treating and protecting the population:

“This is true homeland security,” he said.

Dr Thomas Frieden, director of the US Centers for Disease Control and Prevention (CDC) said drug resistance is becoming a very big problem:

“We are all connected by the air we breathe, and that is why this must be everyone’s problem.”

Many experts agree that drug resistant diseases are a global problem and that rich countries need to help the poorer nations to bolster resources to ensure prompt testing, diagnosis and treatment, for all our sakes.

The main reason drug resistant diseases like MDR- (moderately drug resistant), XDR- (extensively drug resistant) and now XXDR-TB develop is because doctors faced with new strains inadvertently give the wrong drug, or patients fail, for whatever reason, to complete their treatment before the disease is overcome, giving opportunity for mutations that are increasingly resistant to prevail.

TB expert Dr Lee Reichman who is based at the New Jersey Medical School Global Tuberculosis Institute agreed it was a global issue:

“It’s not a foreign problem, you can’t keep these TB patients out. It’s time people realize that,” he told the AP.

According to the World Health Organization, left untreated, each person with active TB disease will infect on average between 10 and 15 people every year, but people who become infected don’t necessarily fall sick. The immune system “walls off” the bacterium, protecting it with a “thick waxy coat”, and thus it can stay dormant for many years. Then, when the immune system weakens, the risk of the TB turning into an active disease rises.

Overall, says the WHO, about one third of the world’s population is currently infected with the TB bacillus, and someone in the world is newly infected every second.

Source: AP/Baltimore Sun, CDC, WHO.

Written by: Catharine Paddock, PhD