XDR-TB Patients Chafe Under Lockdown in South Africa

[Guest guest]

TB Patients Chafe Under Lockdown in South Africa By CELIA W. DUGGER

PORT ELIZABETH, South Africa — The Pearson TB Hospital here is

like a prison for the sick. It is encircled by three fences topped

with coils of razor wire to keep patients infected with lethal strains

of tuberculosis from escaping.

But at Christmastime and again around Easter, dozens of them cut holes

in the fences, slipped through electrified wires or pushed through the

gates in a desperate bid to spend the holidays with their families.

Patients have been tracked down and forced to return; the hospital has

quadrupled the number of guards. Many patients fear they will get out

of here only in a coffin.

" We're being held here like prisoners, but we didn't commit a crime, "

Siyasanga Lukas, 20, who has been here since 2006, said before

escaping last week. " I've seen people die and die and die. The only

discharge you get from this place is to the mortuary. "

Struggling to contain a dangerous epidemic of extensively

drug-resistant tuberculosis, known as XDR-TB, the South African

government's policy is to hospitalize those unlucky enough to have the

disease until they are no longer infectious. Hospitals in two of the

three provinces with the most cases — here in the Eastern Cape, as

well as in the Western Cape — have sought court orders to compel the

return of runaways.

The public health threat is grave. The disease spreads through the air

when patients cough and sneeze. It is resistant to the most effective

drugs. And in South Africa, where these resistant strains of

tuberculosis have reached every province and prey on those whose

immune systems are weakened by AIDS, it will kill many, if not most,

of those who contract it.

As extensively drug-resistant TB rapidly emerges as a global threat to

public health — one found in 45 countries — South Africa is grappling

with a sticky ethical problem: how to balance the liberty of

individual patients against the need to protect society.

It is a quandary that has recurred over the past century, not least in

New York City, where uncooperative TB patients were confined to North

Brother Island in the East River in the early 1900s and to Rikers

Island in the 1950s.

In the early 1990s, when New York faced its own outbreak of

drug-resistant TB, the city treated people as outpatients and locked

them up in hospitals only as a last resort.

Most other countries are now treating drug-resistant TB on a voluntary

basis, public health experts say. But health officials here contend

that the best way to protect society is to isolate patients in TB

hospitals. Infected people cannot be relied on to avoid public places,

they say. And treating people in their homes has serious risks:

Patients from rural areas often live in windowless shacks where

families sleep jammed in a single room — ideal conditions for

spreading the disease.

" XDR is like biological warfare, " said Dr. Bongani Lujabe, the chief

medical officer at Pearson hospital. " If you let it loose, you

decimate a population, especially in poor communities with a high

prevalence of H.I.V./AIDS. "

But other public health experts say overcrowded, poorly ventilated

hospitals have themselves been a driving force in spreading the

disease in South Africa. The public would be safer if patients were

treated at home, they say, with regular monitoring by health workers

and contagion-control measures for the family. Locking up the sick

until death will also discourage those with undiagnosed cases from

coming forward, most likely driving the epidemic underground.

" It's much better to know where the patients are and treat them where

they're happy, " said Dr. Tony Moll, chief medical officer at the

Church of Scotland Hospital in Tugela Ferry. It is running a pilot

project to care for patients at home.

Some 563 people were confirmed with extensively drug-resistant TB last

year in South Africa and started on treatment, compared with only 20

cases in the United States from 2000 through 2006. A third of those

patients in South Africa died in 2007; more than 300 remained in

hospitals.

Further complicating matters, South Africa's provinces have taken

different approaches to deciding how long to hospitalize people with

XDR-TB. In KwaZulu-Natal, the other province with the most cases, the

main hospital is discharging patients after six months of treatment,

even if they remain infectious, to make room for new patients who have

a better chance of being cured. The province is rapidly adding beds,

part of a national expansion of hospital capacity for XDR-TB.

" We know we're putting out patients who are a risk to the public, but

we don't have an alternative, " said Dr. Iqbal Master, chief medical

officer of the King V Hospital in Durban.

Two days of interviews with patients cloistered here at the

Pearson hospital offered a rare glimpse of what all sides agree are

the wrenching human costs of the patients' confinement, as well as

their rebellious feelings about being cut off from their loved ones.

Zelda Hansen, 37, the wife of a welder and mother of sons ages 4, 12

and 14, has lived at the hospital for more than a year. She was among

the 31 extensively drug-resistant patients who escaped from the

350-bed hospital before Christmas, along with 57 patients with less

severe strains of drug resistance. Her eldest son had started to seem

like a stranger to her, she said, while her youngest, her " flower

pot, " was growing up without her guidance.

Once home, she said: " I just sat and watched them. And I was very happy. "

Soon the media trumpeted news of the infectious runaways. A provincial

health department spokesman vowed they would be " hunted down. " On Dec.

23, a Sunday morning, Mrs. Hansen said, police officers wearing

infection-control masks came to her door. A crowd of neighbors

gathered for the spectacle.

Mrs. Hansen refused to go. She begged for a few more days — just

through Christmas.

Her middle son, Trevino, 12, fearing she had done something wrong,

offered his barefoot mother his sneakers, called tekkies here.

" `Here, Mommy, take my tekkies, go with the police,' " she said he

had pleaded with her. " `Please, Mommy, go.' "

Back at the hospital, on the outskirts of Port , Mrs. Hansen

descended into despair. " I felt like going to the trees and just

hanging myself, I was so humiliated, " she said.

When news of South Africa's outbreak of extensively drug-resistant TB

was announced in Toronto in 2006 at an international AIDS meeting, it

sent shudders through the ranks of infectious-disease specialists.

These virulent strains had rapidly killed 52 of 53 patients.

Drug resistance emerges in large part because health care systems too

often have failed to ensure that patients successfully complete

treatments with first- and second-line drugs, according to

international health officials.

The medicines for ordinary TB here cost about $36 and take six to

eight months to cure the patient. The drugs for XDR-TB cost about

$7,000, and treatment lasts two years. At the start, patients endure

four to six months of painful daily injections in the buttocks or

thigh, a morning ritual at Pearson that leaves faces scrunched up

in agony. A 10-year-old boy whose mother recently died here of the

disease rubbed cream into his backside to relieve the ache. He now

lives on the XDR-TB ward as its solitary child, with no family around.

" I do think about my mother, " he said. " But I don't cry because I'll

never get her back again. "

Dr. Lindiwe Mvusi, who manages the government's tuberculosis program,

said the hospitals shouldn't be seen as prisons, and that requests in

special circumstances to go home should be considered individually.

The Pearson hospital had suspended all weekend passes to patients

for months, and only recently reinstated them for the handful of

XDR-TB patients showing signs of becoming noninfectious.

The provinces began diagnosing and treating XDR-TB on a large scale

more than a year ago, but the question of where to care for South

Africans who remain infected after two years or more of treatment is

unsettled.

" We expect they will die at some stage, but what do we do with them in

the meantime? " asked Dr. Mvusi. " Do we send them home or keep them in

a sanitarium for life? "

At Pearson, patients who have different degrees of drug

resistance — with XDR-TB being more deadly than multidrug-resistant TB

— live in different quarters, but they mix on the grounds. Infectious

disease experts say that some of the multidrug-resistant patients are

likely to catch the more severe XDR strains of tuberculosis directly

from their fellow patients.

Jantjes, the chief professional nurse in Pearson's XDR-TB

unit, said that multidrug-resistant patients were turning into XDR-TB

patients at an " intense rate. "

Vuyokazi Gqawe, 30, a saloonkeeper, was admitted to the hospital more

than two years ago with the lesser form of drug-resistant TB, then was

found to have the far more dangerous kind in June. " They don't have

the answers, " she said.

Mrs. Gqawe was pregnant when she was admitted and gave birth here, but

she sent her newborn to live with family. She has since seen her

daughter, now 2, only in photographs, except when she once waved to

her through the hospital gate. " She didn't even know who I was, " Ms.

Gqawe said.

The hospital itself is a caldron of discontent. The staff members and

the patients share a pervasive sense of dread.

" It's going to burst, " warned Louise Bruiners, the sole social worker

for the more than 300 patients. " Something really bad is going to happen. "

Angry patients bully and threaten the staff and have even brandished

knives at security guards to get out of the hospital, hospital

managers said. Crowds of patients have blockaded the entry gate,

demanding weekend passes to go home.

On a recent Saturday, as workmen tried to erect a second buffer gate

at the entrance, patients pulled it down, jumped up and down on it and

repeatedly heaved a chunk of concrete on it.

The hospital's management has been trying to make Pearson more

tolerable. It has brought in a pool table, flat-panel televisions,

soccer balls and sewing machines. Hospital managers hope to bring

patients' families for more regular visits.

" It's good, the things they're doing, and we thank them for it, " said

Mrs. Hansen, the patient who briefly escaped, " but nothing can replace

your freedom. "

http://www.nytimes.com/2008/03/25/world/africa/25safrica.html

[Guest guest]

How contagious is XDR-TB? If it passed through the air by coughing

and sneezing like influenza does, will it tear through a population

infecting almost everyone, the way a new strain of influenza does?

One of the things about new strains of flu is that virtually no one in

the population has immunity against it, accounting for its incredibly

rapid and pervasive spread. Can the same be said for XDR-TB? I am

guessing not because it is already in the environment and hasn't gone

pandemic.

>

> TB Patients Chafe Under Lockdown in South Africa By CELIA W. DUGGER

> PORT ELIZABETH, South Africa — The Pearson TB Hospital here is

> like a prison for the sick. It is encircled by three fences topped

> with coils of razor wire to keep patients infected with lethal strains

> of tuberculosis from escaping.

>

> But at Christmastime and again around Easter, dozens of them cut holes

> in the fences, slipped through electrified wires or pushed through the

> gates in a desperate bid to spend the holidays with their families.

> Patients have been tracked down and forced to return; the hospital has

> quadrupled the number of guards. Many patients fear they will get out

> of here only in a coffin.

>

> " We're being held here like prisoners, but we didn't commit a crime, "

> Siyasanga Lukas, 20, who has been here since 2006, said before

> escaping last week. " I've seen people die and die and die. The only

> discharge you get from this place is to the mortuary. "

>

> Struggling to contain a dangerous epidemic of extensively

> drug-resistant tuberculosis, known as XDR-TB, the South African

> government's policy is to hospitalize those unlucky enough to have the

> disease until they are no longer infectious. Hospitals in two of the

> three provinces with the most cases — here in the Eastern Cape, as

> well as in the Western Cape — have sought court orders to compel the

> return of runaways.

>

> The public health threat is grave. The disease spreads through the air

> when patients cough and sneeze. It is resistant to the most effective

> drugs. And in South Africa, where these resistant strains of

> tuberculosis have reached every province and prey on those whose

> immune systems are weakened by AIDS, it will kill many, if not most,

> of those who contract it.

>

> As extensively drug-resistant TB rapidly emerges as a global threat to

> public health — one found in 45 countries — South Africa is grappling

> with a sticky ethical problem: how to balance the liberty of

> individual patients against the need to protect society.

>

> It is a quandary that has recurred over the past century, not least in

> New York City, where uncooperative TB patients were confined to North

> Brother Island in the East River in the early 1900s and to Rikers

> Island in the 1950s.

>

> In the early 1990s, when New York faced its own outbreak of

> drug-resistant TB, the city treated people as outpatients and locked

> them up in hospitals only as a last resort.

>

> Most other countries are now treating drug-resistant TB on a voluntary

> basis, public health experts say. But health officials here contend

> that the best way to protect society is to isolate patients in TB

> hospitals. Infected people cannot be relied on to avoid public places,

> they say. And treating people in their homes has serious risks:

> Patients from rural areas often live in windowless shacks where

> families sleep jammed in a single room — ideal conditions for

> spreading the disease.

>

> " XDR is like biological warfare, " said Dr. Bongani Lujabe, the chief

> medical officer at Pearson hospital. " If you let it loose, you

> decimate a population, especially in poor communities with a high

> prevalence of H.I.V./AIDS. "

>

> But other public health experts say overcrowded, poorly ventilated

> hospitals have themselves been a driving force in spreading the

> disease in South Africa. The public would be safer if patients were

> treated at home, they say, with regular monitoring by health workers

> and contagion-control measures for the family. Locking up the sick

> until death will also discourage those with undiagnosed cases from

> coming forward, most likely driving the epidemic underground.

>

> " It's much better to know where the patients are and treat them where

> they're happy, " said Dr. Tony Moll, chief medical officer at the

> Church of Scotland Hospital in Tugela Ferry. It is running a pilot

> project to care for patients at home.

>

> Some 563 people were confirmed with extensively drug-resistant TB last

> year in South Africa and started on treatment, compared with only 20

> cases in the United States from 2000 through 2006. A third of those

> patients in South Africa died in 2007; more than 300 remained in

> hospitals.

>

> Further complicating matters, South Africa's provinces have taken

> different approaches to deciding how long to hospitalize people with

> XDR-TB. In KwaZulu-Natal, the other province with the most cases, the

> main hospital is discharging patients after six months of treatment,

> even if they remain infectious, to make room for new patients who have

> a better chance of being cured. The province is rapidly adding beds,

> part of a national expansion of hospital capacity for XDR-TB.

>

> " We know we're putting out patients who are a risk to the public, but

> we don't have an alternative, " said Dr. Iqbal Master, chief medical

> officer of the King V Hospital in Durban.

>

> Two days of interviews with patients cloistered here at the

> Pearson hospital offered a rare glimpse of what all sides agree are

> the wrenching human costs of the patients' confinement, as well as

> their rebellious feelings about being cut off from their loved ones.

>

> Zelda Hansen, 37, the wife of a welder and mother of sons ages 4, 12

> and 14, has lived at the hospital for more than a year. She was among

> the 31 extensively drug-resistant patients who escaped from the

> 350-bed hospital before Christmas, along with 57 patients with less

> severe strains of drug resistance. Her eldest son had started to seem

> like a stranger to her, she said, while her youngest, her " flower

> pot, " was growing up without her guidance.

>

> Once home, she said: " I just sat and watched them. And I was very

happy. "

>

> Soon the media trumpeted news of the infectious runaways. A provincial

> health department spokesman vowed they would be " hunted down. " On Dec.

> 23, a Sunday morning, Mrs. Hansen said, police officers wearing

> infection-control masks came to her door. A crowd of neighbors

> gathered for the spectacle.

>

> Mrs. Hansen refused to go. She begged for a few more days — just

> through Christmas.

>

> Her middle son, Trevino, 12, fearing she had done something wrong,

> offered his barefoot mother his sneakers, called tekkies here.

>

> " `Here, Mommy, take my tekkies, go with the police,' " she said he

> had pleaded with her. " `Please, Mommy, go.' "

>

> Back at the hospital, on the outskirts of Port , Mrs. Hansen

> descended into despair. " I felt like going to the trees and just

> hanging myself, I was so humiliated, " she said.

>

> When news of South Africa's outbreak of extensively drug-resistant TB

> was announced in Toronto in 2006 at an international AIDS meeting, it

> sent shudders through the ranks of infectious-disease specialists.

> These virulent strains had rapidly killed 52 of 53 patients.

>

> Drug resistance emerges in large part because health care systems too

> often have failed to ensure that patients successfully complete

> treatments with first- and second-line drugs, according to

> international health officials.

>

> The medicines for ordinary TB here cost about $36 and take six to

> eight months to cure the patient. The drugs for XDR-TB cost about

> $7,000, and treatment lasts two years. At the start, patients endure

> four to six months of painful daily injections in the buttocks or

> thigh, a morning ritual at Pearson that leaves faces scrunched up

> in agony. A 10-year-old boy whose mother recently died here of the

> disease rubbed cream into his backside to relieve the ache. He now

> lives on the XDR-TB ward as its solitary child, with no family around.

>

> " I do think about my mother, " he said. " But I don't cry because I'll

> never get her back again. "

>

> Dr. Lindiwe Mvusi, who manages the government's tuberculosis program,

> said the hospitals shouldn't be seen as prisons, and that requests in

> special circumstances to go home should be considered individually.

>

> The Pearson hospital had suspended all weekend passes to patients

> for months, and only recently reinstated them for the handful of

> XDR-TB patients showing signs of becoming noninfectious.

>

> The provinces began diagnosing and treating XDR-TB on a large scale

> more than a year ago, but the question of where to care for South

> Africans who remain infected after two years or more of treatment is

> unsettled.

>

> " We expect they will die at some stage, but what do we do with them in

> the meantime? " asked Dr. Mvusi. " Do we send them home or keep them in

> a sanitarium for life? "

>

> At Pearson, patients who have different degrees of drug

> resistance — with XDR-TB being more deadly than multidrug-resistant TB

> — live in different quarters, but they mix on the grounds. Infectious

> disease experts say that some of the multidrug-resistant patients are

> likely to catch the more severe XDR strains of tuberculosis directly

> from their fellow patients.

>

> Jantjes, the chief professional nurse in Pearson's XDR-TB

> unit, said that multidrug-resistant patients were turning into XDR-TB

> patients at an " intense rate. "

>

> Vuyokazi Gqawe, 30, a saloonkeeper, was admitted to the hospital more

> than two years ago with the lesser form of drug-resistant TB, then was

> found to have the far more dangerous kind in June. " They don't have

> the answers, " she said.

>

> Mrs. Gqawe was pregnant when she was admitted and gave birth here, but

> she sent her newborn to live with family. She has since seen her

> daughter, now 2, only in photographs, except when she once waved to

> her through the hospital gate. " She didn't even know who I was, " Ms.

> Gqawe said.

>

> The hospital itself is a caldron of discontent. The staff members and

> the patients share a pervasive sense of dread.

>

> " It's going to burst, " warned Louise Bruiners, the sole social worker

> for the more than 300 patients. " Something really bad is going to

happen. "

>

> Angry patients bully and threaten the staff and have even brandished

> knives at security guards to get out of the hospital, hospital

> managers said. Crowds of patients have blockaded the entry gate,

> demanding weekend passes to go home.

>

> On a recent Saturday, as workmen tried to erect a second buffer gate

> at the entrance, patients pulled it down, jumped up and down on it and

> repeatedly heaved a chunk of concrete on it.

>

> The hospital's management has been trying to make Pearson more

> tolerable. It has brought in a pool table, flat-panel televisions,

> soccer balls and sewing machines. Hospital managers hope to bring

> patients' families for more regular visits.

>

> " It's good, the things they're doing, and we thank them for it, " said

> Mrs. Hansen, the patient who briefly escaped, " but nothing can replace

> your freedom. "

> http://www.nytimes.com/2008/03/25/world/africa/25safrica.html

>