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Mon June 3, 2013
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A Boston Family's Struggle With TB Reveals A Stubborn Foe

Originally published on Tue June 4, 2013 9:10 am

Thanks to gold-standard tuberculosis treatment and prevention programs, cases of TB in the United States have declined every year for the past two decades — to the lowest level ever.

But TB's course through the Williams family in Boston shows that no nation can afford to relax its efforts to find, treat and prevent TB. It's just too sneaky and stubborn an adversary.

One-third of the human race is infected with tuberculosis, a persistent public health problem that kills 1.4 million people a year.

The Williams family story begins in late 2010, when Judy Williams lost her appetite and energy and began to lose weight at a great rate.

She was the matriarch of a large extended family, with three generations under one roof and many friends and relatives who often dropped in. That's an important element of our story.

Her son Robert says Judy Williams "would always cook for people, invite people into the house. Like the homeless — she let them stay there with the family and all. She was just very kind to everybody."

And that may be how she got TB. She may have had a silent, noncontagious infection for years.

Judy Williams seems like an unlikely case of TB infection. For the last three decades of her life, she rarely ventured outside the family home.

Robert thinks it's because she was afraid of street violence. Her daughter Michelle thinks she had a mental disorder — a fear of the outside world that doctors call agoraphobia.

Whatever the reason, her reclusiveness would seem to put Judy Williams at very low risk of getting TB.

As much as she took care of others, Judy Williams never took care of herself. She smoked, and at one point she weighed close to 400 pounds.

But then she stopped cooking and retreated to her room. Her weight dropped 150 pounds over a few months. That can be a sign of active TB.

Finally Michelle forced her to go to the doctor. "If it wasn't for me taking her, nobody would have ever known she had TB because she wasn't going to go," she says.

Still, weeks would pass before the diagnosis was made.

Doctors at Boston Medical Center recognized right away that Judy Williams had severe, untreated diabetes. And they suspected TB because a chest X-ray showed suspicious shadows on her lungs. But it could have been lung cancer.

They scheduled a followup CT scan. But Judy, who had a terrible fear of doctors and hospitals, skipped the appointment.

At one point a visiting nurse called the hospital from the Williams home. Boston public health nurse Michael Malone says he warned the doctors that "there's a lot of people in and out of this household ... so if this is TB, there's going to be a long list of people exposed to Judy."

Judy Williams' TB didn't get diagnosed for another month or so, after she was rushed to the hospital by ambulance in a diabetic crisis. While she was there, doctors established without a doubt that TB had eaten a large cavity in her left lung.

"That suggests her TB had been active and unchecked for an extended period of time," nurse Malone says. It also made her maximally contagious.

And then there was a slip-up. Once she was past the diabetic crisis, Judy Williams was sent home.

She should have been quarantined at a TB treatment center until she was no longer contagious. But she was discharged over Martin Luther King weekend 2011, and public health officials didn't get notified in time. They had the legal power to require her to stay in the hospital for treatment.

Another factor: Judy Williams was a strong-willed woman who made it very clear she had no desire to stay in the hospital.

A month later, she began coughing up copious amounts of blood at home. The family called 911, and Judy was rushed to the hospital, but it was too late.

"I knew she was dead," says daughter Michelle. "I seen my mother — I hate talking about it — when I went to the hospital ... just laid up on life support." After a week, she authorized the doctors to pull the plug. Her mother was 59 years old.

Robert, who was especially close to his mother, was so distraught he couldn't bring himself to go to her funeral.

As soon as Judy Williams was diagnosed with TB, Boston public health workers began testing the family to see if she'd infected others.

"Around 20 people in the extended family were tested," Malone says, "and about half of those showed evidence of TB infection."

All were in the latent or early stage of infection, which means they had no symptoms and couldn't pass TB to anyone else.

That's one of the hallmarks of TB: Most people who get infected go a lifetime without ever getting active, contagious disease. But if left untreated, when something happens to lower their immunity, the infection can roar to life, attacking lungs, kidneys, spine, brain or other parts of the body.

In Judy Williams' case, it was probably her untreated diabetes that lowered her immunity and gave the TB germ its chance.

All but one of the people identified as TB-infected after Judy Williams' death completed a voluntary, nine-month course of medicine to prevent the infection from progressing.

At this point, the public health people thought they'd done their job. So they were shocked when last October, 20 months after Judy Williams' death, her 35-year-old nephew came to the hospital with advanced TB.

"It was a very painful discovery," Malone says. "He'd had two skin tests which pointed away from any infection. He was never offered prevention medicine because there was no indication for it. And yet he obviously had been infected."

Then, a month later, a 20-year-old man came to the hospital with active TB – the boyfriend of one of Judy Williams's granddaughters.

Meanwhile, Judy's son Robert had been losing a lot of weight. Around Thanksgiving of last year, he felt he couldn't breathe. TB had eaten a large hole in his lung. Robert went willingly to a state hospital for two months of quarantine until he was no longer infectious to others, and remains on outpatient treatment.

DNA testing showed all three men were infected with the same strain of TB as Judy Williams — meaning they got it from her.

But all three men had tested negative for TB on two successive skin tests done weeks apart back in 2011.

"We thought it had to be a fluke, really an outlier, that someone would have negative skin tests and be infected with TB," Malone says. "But that is one of the limitations of the test. Some people just don't respond."

Unfortunately, a nonresponse is more likely when someone has active TB or lowered immunity for some reason, such as HIV infection. And sometimes the results can be wrong when health workers don't wait long enough between the first and second skin tests.

"We may have done our second round of testing too quickly in this case," Malone says.

The public health nurse, whose full-time job is battling TB in the community, says the Williams family's story is a sobering reminder of how challenging it can be to track TB infection and prevent its spread.

After the three new cases of active TB popped up, another round of testing revealed three more infections — all in people who had tested negative in early 2011. They include daughter Michelle, her first husband and her 4-year-old granddaughter.

So now, more than two years after TB was first diagnosed in the Williams family, they're still struggling with the disease.

Every day Robert takes a bus to the Boston Medical Center, where a nurse watches him take a handful of pills. If he starts missing doses, he could develop a resistant form of TB that's more dangerous and difficult to treat.

Michelle makes sure that she and her granddaughter Ayniah don't miss a dose of medicine or a monthly checkup.

"I take mine every day," Michelle says. "I saw what happened to my mother. I don't play with it. Since my mother passed, it's just too scary for me."

Within a few months, everybody in the Williams family will finish treatment. Then they can finally put TB behind them.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

It's MORNING EDITION, from NPR News. Good morning, I'm Renee Montagne.

LINDA WERTHEIMER, HOST:

And I'm Linda Wertheimer.

Today in Your Health, we launch a series on one of the world's biggest public health problems: tuberculosis.

MONTAGNE: A third of the world's population is infected with the TB germ. Most of them won't ever get sick from it. But if something lowers their immunity, the disease can wreak havoc with the lungs and other organs. Every year, 1.4 million people die from TB.

WERTHEIMER: The United States has the world's best TB care and prevention programs and it pays off. Officials say cases in this country are at an all-time low.

MONTAGNE: Still, TB is a stubborn adversary. NPR's Richard Knox reports on how the disease spread through one family and gave Boston public health officials some nasty surprises.

RICHARD KNOX, BYLINE: Since her mother died more than two years ago, Michelle Williams has been the one who holds things together.

MICHELLE WILLIAMS: Get in here. I said get in here.

KNOX: It's not easy. The Williams household contains three generations and many other people often drop in.

M. WILLIAMS: Only difference between me and my mother, my mother was the kindest, the sweetest - I'm not.

KNOX: On a typical weekend, a couple dozen people might congregate in this house. That's an important element of our story. Michelle's mother Judy Williams, who died at the age of 59, is still a presence in the household. In a corner of the living room her son Robert has constructed a memorial.

ROBERT WILLIAMS: This is my shrine that I have put up for my mother right here. That's my mom. That's a little flower, I kept these going since she died. That's where I keep my memories, right here.

KNOX: But she's still in the middle of things.

R. WILLIAMS: Yeah, she's always going to be here.

KNOX: For the last 30 years of her life, Judy Williams almost never left the family home. Robert says she was afraid to go out on the street because of all the violence. Michelle thinks she had a mental disorder, a fear of the outside world that doctors call agoraphobia. But she loved to have people come to her house.

R. WILLIAMS: She used to always, you know, cook for people. Invite people into the house. Like, if you were homeless she'd let them stay there with the family and all.

KNOX: And that may be how she got tuberculosis. She may have been infected for years. As much as she took care of others, Judy Williams never took care of herself. She smoked and she weighed close to 400 pounds.

M. WILLIAMS: That's her right there.

KNOX: When was that taken?

M. WILLIAMS: Ooh, that was taken - see how big she was - oh Lord, that was taken years ago. Years ago, before she even knew she was sick.

KNOX: Toward the end of 2010, Judy Williams lost her appetite and began to lose weight. Finally Michelle forced her to go to the doctor.

Michael Malone, a public health nurse in Boston, picks up the story.

MICHAEL MALONE: She weighed 260 pounds. And she lost 100 to 150 pounds in the proceeding several months.

KNOX: That kind of weight loss can be a sign of tuberculosis. Doctors suspected it and wanted to do more tests. But Judy had a terrible fear of doctors and hospitals, and she didn't keep the follow-up appointments.

MALONE: A visiting nurse who'd actually called into the hospital saying, you know, if this is TB - because the nurses knew that was one of the possibilities - there's a lot of people in and out of this household. There are several generations of family and a lot of visitors. And so, if this turns out to be TB, there's going to be a large list of people exposed to Judy.

KNOX: But Judy's TB didn't get diagnosed for another month or so, after she was rushed to the hospital by ambulance in a diabetic crisis. And then there was a slip-up. Once she was past the crisis, Judy Williams was sent home. She should have been quarantined at a TB center until she was no longer contagious. But she was discharged over a holiday weekend in 2011 and public health officials didn't get notified in time. They could have required her to stay in the hospital for treatment.

MALONE: My sense is that it was her strong desire to go home and not remain in the hospital, that might have been a force that had her home in a matter of five or six days.

KNOX: A month later Judy Williams began coughing up blood at home.

R. WILLIAMS: I didn't see my mother. I seen my mother - I hate talking about it - when I went to the hospital. That's how she was, just laid up like that on life support. So I just pulled the plug on the 15th of February.

KNOX: Robert was so distraught he couldn't bring himself to go to her funeral.

As soon as Judy Williams was diagnosed with TB, public health workers began doing tests to see if she'd infected others.

MALONE: Around 20 people in the extended family were tested. And about half of those showed evidence of TB infection.

KNOX: All were in an early stage of infection. They had no symptoms and couldn't pass TB to anyone else. All but one completed a nine-month course of medicine to prevent the infection from progressing.

At this point, the public health people thought they had done their job. So they were shocked last October, 20 months after Judy Williams' death, when her 35-year-old nephew came to the hospital with advanced TB.

MALONE: It's a very painful discovery. He'd had two skin tests which pointed away from any infection. He was never offered prevention medicine because there was no indication for it. And yet he obviously had been infected.

KNOX: Then a month later, a 20-year-old man came to the hospital with active TB, the boyfriend of one of Judy Williams' granddaughters.

Meanwhile, Judy's son Robert had been losing a lot of weight. Around Thanksgiving of last year, he felt like he couldn't breathe. Turns out TB had eaten a large hole in his lung. Robert was sent to a state hospital for two months of quarantine until he was no longer contagious.

DNA testing showed all three men were infected with the same strain of TB as Judy Williams, meaning they got it from her.

But all three men had tested negative for TB on two successive skin tests done back in 2011.

MALONE: We thought it had to be a fluke, really an outlier, that someone would have negative skin tests and be infected with TB. But that is one of the limitations of the test. Some people just don't respond to these type of tests.

KNOX: And sometimes the results can be wrong when health workers don't wait long enough between the first and second skin tests. Malone says it's all been a sobering reminder of how challenging it can be to track TB infection and prevent its spread.

MALONE: Hindsight was an unfortunately good teacher in telling us that we may have done our second round of testing too quickly in this case when Judy was ill. And also when she returned home, she may have remained contagious right up to the time of her sudden death in a way that we hadn't fully appreciated back at that time.

KNOX: Another, more aggressive round of testing in the Williams family and their close contacts revealed three more infections - all in people who'd tested negative in early 2011. They include Michelle, her first husband, and her four-year-old granddaughter.

So now, more than two years after TB was first diagnosed in the Williams family, they're still struggling with the disease.

(SOUNDBITE OF STREET NOISE)

ANNOUNCER: Harrison Avenue, Boston Medical Center.

KNOX: This is your stop?

R. WILLIAMS: Yes, it is.

KNOX: Every day, Robert takes the bus to a TB clinic, where a nurse watches him take a handful of pills.

(SOUNDBITE OF WATER POURING INTO CUP)

UNIDENTIFIED WOMAN: OK, so that looks about right?

R. WILLIAMS: Yup.

UNIDENTIFIED WOMAN: OK.

R. WILLIAMS: There's about 10 pills here.

UNIDENTIFIED WOMAN: The main point is just to give him his medications and that we watch him take his medications. That's all. Yeah.

KNOX: You have to be really sure.

UNIDENTIFIED WOMAN: Yes, we have to be sure. Make sure that he's getting the medicine he's supposed to so that he can get better each day.

KNOX: If he starts missing doses, Robert could develop a resistant form of TB that's more dangerous and difficult to treat.

Michelle makes sure that she and her granddaughter Ayniah don't miss a dose of medicine or a monthly checkup.

PAMELA COPPINGER: I need to get Ayniah's weight first. Can you take off your jacket? I need to get your weight.

M. WILLIAMS: Oh, yes.

COPPINGER: OK? Can you take off your jacket? We need to get your weight.

KNOX: Nurse Pamela Coppinger says Ayniah has gained a little weight, so her medication dose may have to be increased. She asks Michelle if she takes her medicine without fail.

M. WILLIAMS: I take mine every day.

COPPINGER: OK. So...

M. WILLIAMS: I seen what happened to my mother, I don't play with it. You know, since my mother passed, it's just too scary for me. You know what I mean? This is weird because I don't know where the stuff's coming from.

COPPINGER: Well, the good news is it's treatable. And that's what you're here for now...

M. WILLIAMS: Yeah.

COPPINGER: ...to prevent the TB germ from waking up and making you sick and Ayniah sick.

KNOX: Within a few months, everybody in the Williams family will finish treatment and can finally put TB behind them.

Richard Knox, NPR News, Boston.

(SOUNDBITE OF MUSIC)

MONTAGNE: Later today on ALL THINGS CONSIDERED, how the Eastern European country of Moldova is struggling with the spread of drug-resistant TB.

This is MORNING EDITION from NPR News. Transcript provided by NPR, Copyright NPR.

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