RENEE MONTAGNE, host:
This is MORNING EDITION from NPR News. I'm Renee Montagne.
Atlanta lawyer Andrew Speaker is the most famous patient with drug-resistant tuberculosis in America. But he's not the only one; about a hundred such cases are reported to U.S. health authorities each year. Perhaps one in five patients with drug-resistant TB is ordered, like Speaker, to stay in the hospital until he or she is no longer contagious.
Last week, Andrew Speaker testified by phone to a Senate committee from his bed at a hospital in Denver. He insisted he didn't know he was putting anyone at risk when he flew from Atlanta to Europe for his wedding and honeymoon.
Mr. ANDREW SPEAKER (Lawyer): As far as I knew from my medical advice, and I don't think anyone is going to get in front of you today and tell you otherwise, I was clearly told I was not contagious.
MONTAGNE: But Julie Gerberding, head of the federal Centers for Disease Control and Prevention, said Andrew Speaker's travels to Europe and back made it clear that the agency needs to act more quickly and assertively to confine patients who have certain communicable diseases.
Dr. JULIE GERBERDING (Centers for Disease Control and Prevention): We gave the patient the benefit of the doubt and in retrospect we made a mistake.
MONTAGNE: Now we go to NPR's Richard Knox, who has this report on another man with extensively drug-resistant TB in Arizona, who's being held in a hospital under court order. That case is raising even sharper questions about how to provide complicated treatment, protect the public, and prevent the spread of a dangerous new strain of TB.
RICHARD KNOX: Robert Daniels is the second-most famous TB patient these days. Since last summer he's been locked in a bare room on the fourth floor of the Maricopa County Hospital in Phoenix. It's a jail unit for criminals who need medical care.
Daniels hasn't been charged with a crime. He's there because he's been judged a menace to public health.
Daniels hates his incarceration. But he enjoys the attention he's been getting lately. He runs down the list of news organizations that have called his cell phone.
Mr. ROBERT DANIELS (Tuberculosis Patient, Maricopa County Hospital): I like the names - National Geographic, USA Today, People, "Good Morning America," "60 Minutes," CNN, Associated Press, Channel 3, Channel 5, Channel 12, and so on.
KNOX: Daniels is a 27-year-old drifter. Born in Russia, he emigrated to Phoenix with his parents as a boy. He drifted back to Russia a decade ago; that's where he caught TB - maybe in a jail cell, serving time for marijuana possession. He's not sure.
Mr. DANIELS: You could catch it anywhere. I just had a low immune system because I was, you know, partying a lot. I was young - too much beer, vodka, women, smoking.
KNOX: After he got out of prison, he got sick.
Mr. DANIELS: I started coughing and I felt really bad. And they said you've got TB. And I started taking medicine. And then when I took the medicine, they said I was fine. And after a year, I started spitting up blood.
KNOX: In January of last year, his health worsening, he came back to Phoenix - on an airplane. He worked low-paying construction jobs and slept in his second-hand car. By mid-February, his symptoms got worse. He went to an emergency room; doctors found extensive lung damage and diagnosed multiply drug-resistant TB.
They put him in a residence for homeless TB patients. Nurses watched him take his morning pills. They lectured him not to skip evening doses, taught him how to give himself intravenous medicine, and warned him to put on a facemask when he was in confined public spaces, like a store or bus.
Daniels admits he didn't.
Mr. DANIELS: I wouldn't want to put on a mask in a bad neighborhood, standing outside the frickin store putting on a mask. What do you think? Do I want to get shot or something? Of course I don't. I mean this is stupid. Everybody's thinking so why weren't you wearing this mask? Anybody wouldn't wear it. You know, anybody wouldn't wear the mask.
KNOX: When public health workers ask him if he wore a mask, he lied.
Mr. DANIELS: I was lying. Yes, I was. I already admitted that I did a mistake. I already said that I was sorry. But that's not enough.
KNOX: Court papers say Daniels also didn't take a high-powered antibiotic when he was supposed to. Health officials worried that would lead him to become what doctors call extensively drug resistant. And in fact that's what happened. Tests have confirmed he now has XDR tuberculosis.
Now Daniels feels trapped in a nightmare. He hasn't showered in months. He gets no exercise or fresh air.
Mr. DON PACHODA (American Civil Liberties Union): He's not seen the horizon, seen a tree from his locked room for 10 months.
KNOX: Don Pachoda is a lawyer with the American Civil Liberties Union.
Mr. PACHODA: He has a light on 24 hours - two lights, two bulbs - 24 hours a day. There's a video camera in the corner of the room that takes pictures of his every activity in that room 24/7. His mail is opened routinely. For most of the 10 months he was not allowed a TV or a phone; and he has absolutely no activities during the day. And it is taking, predictably, a terrible toll on his psyche, and I believe not helpful for the physical treatments as well.
KNOX: And there's no end in sight. There's no telling when or if treatment will make him non-contagious. Until that happens, he'll remain locked up.
The ACLU recently filed suit on Daniels' behalf. It doesn't seek to get him released, only to have him treated in more humane conditions. Pachoda acknowledges his client can be difficult.
Mr. PACHODA: Yup, we all can. And if I were treated that way, I'd be even more difficult. But yeah, yeah, but he's not difficult in the sense of causing any security threats or acting out in any serious manner. He ain't a happy fellow.
KNOX: Daniels' jailer is Joe Arpaio. He calls himself the toughest sheriff in America. He points out that Daniels gets special treatment already. He eats hospital food, not the 15-cent meals of outdated green bologna that ordinary inmates get in Maricopa County.
After reporters began writing about the harsh conditions of Daniels' confinement, Sheriff Arpaio allowed him a cell phone and TV. But even the sheriff is uneasy with the situation.
Mr. ARPAIO: I just feel a little uncomfortable with someone in there that's never been charged with any violation of a law. I don't think that that should happen.
KNOX: The solution Arpaio has in mind, though, would make Daniels a criminal. He's thinking of filing reckless endangerment charges.
Mr. ARPAIO: You put the message out for anybody in the future that you do this type of activity and violate the policies and instructions, that you could be charged with it. What if some people died over what he did? What if they died? Then what?
KNOX: Dr. Bob England hates the idea of criminalizing TB patients. He's the director of public health for Maricopa County, the guy who petitioned the court to lock Daniels up.
Dr. BOB ENGLAND (Director of Public Health, Maricopa County): I'm not saying that there isn't such a thing as reckless endangerment or there isn't such a thing as assault. That's real, okay? But public health will do anything it can not to allow its information and its records to be used in a criminal prosecution.
KNOX: England says that's because making criminals out of patients who don't follow medical advice will only drive them underground, away from treatment and counseling. At the least, England says...
Dr. ENGLAND: People will no longer be honest to public health authorities when we ask them who may you have exposed?
KNOX: Without that honesty England fears a return to the days of tuberculosis sanitariums.
Dr. ENGLAND: If we're not careful with cases of drug-resistant TB and we allow those strains to spread, we will lose the ability to control TB and gradually slip back to the bad old days.
KNOX: The ACLU hopes the court will order Maricopa County to figure out a way to confine Daniels and others like him during treatment without literally putting them in jail.
That's what the state of Texas does. It has a 55-bed TB hospital in San Antonio to serve the whole state. Nine patients with drug-resistant TB are currently under court order there, similar to the locked wards for mental patients judged to be a danger to themselves and others.
But Robert Daniels' medical condition may force a change in his confinement sooner than the ACLU's suit can. There are indications he needs surgery to remove diseased parts of his lung where the resistant bugs lurk.
Doctors at National Jewish Medical Center in Denver have been consulting on Daniels' case. They think they can help him. But National Jewish doesn't accept patients who need an armed guard outside their room.
Richard Knox, NPR News.
MONTAGNE: At npr.org, you can read why TB remains a persistent global health issue and get a timeline of the case of Andrew Speaker, the TB patient now in isolation at National Jewish Hospital in Denver.
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