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Extreme TB Patient Faces Months of Grueling Treatment

A patient with an extremely hard to treat form of tuberculosis faces months and possibly years of grueling treatment with a cocktail of antibiotics.

A patient with an extremely hard-to-treat form of tuberculosis faces months of potentially grueling treatment with a cocktail of antibiotics, some of which can cause deafness, kidney failure and other severe side-effects, experts say.

The patient, who is not being identified, is in a special isolation ward at the National Institutes of Health. The case has made public health officials anxious because the patient traveled from India and then to at least three U.S. states before she sought medical care –- which means hundreds of people will have to be notified about possible exposure.

And the patient herself has a tough time ahead of her, says Dr. Randall Reves of the University of Colorado School of Medicine, who’s treated cases of extensively drug-resistant (XDR) TB. “When I first get a patient with drug-resistant TB, the first thing I do is apologize,” he said.

“I say I’m really sorry that I am going to have to ask you to take old drugs that … are weak and toxic, and we are going to have to treat you for 18 to 24 months, and the only reason we are going to have to do that is because we haven’t insisted on the research that’s necessary to bring forth a safe, effective, well-tolerated short-course treatment.”

“I say I’m really sorry that I am going to have to ask you to take old drugs that … are weak and toxic."

Some of the drugs used against drug-resistant TB can cause permanent deafness, liver damage, kidney failure, psychosis, nausea and other unpleasant complications. “They’re just not really well tolerated. That’s why we stopped using them decades ago," Reves said.

“It’s a drug that, if you were to try to get approved today, they would say, ‘Oh, no. That drug is too toxic for use’. And yet we resort to it because we don’t have anything else.”

It’s part of a general, global shortage of new antibiotics that health officials have been warning about for years and that the White House has made a priority.

The Centers for Disease Control and Prevention defines XDR TB as resisting the effects of the antibiotics isoniazid and rifampin, plus any drug in the fluoroquinolone class and at least one of three injectable second-line drugs, such as amikacin, kanamycin, or capreomycin.

NIH said its team was consulting on which drugs would be best to try.

It can cost up to $430,000 to treat someone for XDR TB, compared to $17,000 for a normal case. NIH says the patient is being treated as part of a clinical trial, which means the NIH will pay for her treatment.

The first task will be to try to get the patient’s infection under control so she is less likely to spread it, Reves said.

“Isolation is based upon the risk for transmission,” Reves told NBC News. “If it’s disease in a lung, and bacteria are in the sputum, that is when transmission can occur,” he said. “Infection is a risk until we can clear the sputum.”

“Isolation is based upon the risk for transmission."

That can take anywhere from a few weeks to a few months, he said.

Tuberculosis can infect various organs, but the best-known form infects the lungs and is spread when people cough, talk or even when they sing. The bacilli bacteria can remain in the air for several hours, although it takes a large dose over time for someone else to catch it. People most at risk are those in small, enclosed spaces with patients who are actively infectious.

The patient traveled in April from India through Chicago O’Hare airport. The patient also spent time in Missouri and Tennessee. Seven weeks after arriving in the United States, the patient sought treatment for and was diagnosed with active TB in McHenry County in northern Illinois.

TB is especially tricky because it can take a latent form that causes no symptoms. People cannot infect others when they have a latent TB infection, but if their immune systems get run down it can become active.