PORT ELIZABETH, South Africa - The Jose 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
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 Jose 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 George V Hospital in Durban.
Two days of interviews with patients cloistered here at the Jose
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
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
Once home, she said: "I just sat and watched them. And I was very
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
Her middle son, Trevino, 12, fearing she had done something
wrong, offered his barefoot mother his sneakers, called tekkies
" '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 Elizabeth, 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 Jose 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
The Jose 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
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 Jose 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.
Peter Jantjes, the chief professional nurse in Jose 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 Jose 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."