AIDS Patients in Zambia Face Stark Choices
------------------------------------------
New York Times
October 11, 2003
by Sharon LaFraniere
LUSAKA, Zambia - Clad in capri jeans, her shoulder-length hair in
cornrows, Kabaso Kasango is just 10 years old and in the fourth
grade. But she knows the telltale signs of AIDS, and she worries
deeply that she is infected.
Her face is covered in bumpy lesions. She has twice contracted
tuberculosis. Her mother's death four years ago, an AIDS coun-
selor says, was the biggest hint of all.
In fact, doctors determined in April that she was H.I.V.-
positive. But what she does not even suspect is that her father
is not only infected as well, but is buying life-sustaining drugs
for himself while she goes without.
In this impoverished, stricken nation, where nearly one in five
adults is infected with H.I.V. and 570,000 children already are
AIDS orphans, this is the agonizing choice confronting Kasango
Kabaso, the 37-year-old fishmonger who is Kabaso's father, and
whose name is hers in reverse: he can stay alive and support a
dying family, or he can perish and leave a dying family with no
money.
Besides his 10-year-old, he provides for his second wife, Cath-
erine, and for their 1-year-old baby girl. Both, he believes, are
also infected with H.I.V., the virus that causes AIDS.
As long as he works, he can usually scrape up $50 a month for one
supply of antiretroviral drugs. If he becomes sick there will be
no drugs - and no food - for anyone.
"I am the breadwinner," Mr. Kabaso, a slender man with even fea-
tures, whispered at an AIDS counseling center. A few feet away,
his daughter Kabaso sat on a blue plastic stool, back turned,
legs swinging rhythmically. "If I die," he said, "it will be dis-
astrous. She won't go to school. No one will feed them."
Much is made of the promise that antiretroviral drugs hold for
Southern Africa, where the AIDS pandemic is at its apex. After
two decades of struggling against the disease with little effect,
Zambia's government has begun taking urgent steps under a new
president, Levy Mwanawasa, to address what health experts now say
is the sixth-worst AIDS epidemic on earth.
But for now, at least, the gap between promise and reality is
cavernous. Less than one percent of the estimated 200,000 or more
Zambians who need antiretroviral treatment to keep AIDS at bay
receive the drugs, according to a United Nations report. Hundreds
of thousands more will be in line as their disease progresses.
The government now treats just 600 patients for a minimal fee. A
handful of others, like Mr. Kabaso, buy the drugs privately at
market rates through local pharmacies.
The government plans to cover at least 20,000 to 30,000 people by
expanding its own program and by using $135 million in five-year
grants from the World Bank and the Global Fund to Fight AIDS, Tu-
berculosis and Malaria. But officials cannot say when treatment
will truly be widespread.
"The problem is humongous," said Vice President Nevers Mumba. "We
are definitely in a very big hurry, but we really cannot solve it
overnight."
Some Zambian clinicians say they do not even mention the exis-
tence of antiretroviral treatment to AIDS patients because it
only depresses them to know they could live if only they were
rich.
"They cannot even afford to buy Panadol," a popular brand of as-
pirin, said Shalunga Cromwell, who treats AIDS patients at the
Mother of Mercy hospice. "It is really, really tough. It is a
question of who has the right to live."
At Hope House, an AIDS counseling center near downtown, a coun-
selor, Jean Malenga, said she was besieged by the infected and
sick clamoring for doses of antiretroviral drugs she was unable
to provide.
Wilson Zulu, a former civil engineer now wasting away from AIDS,
waited there one day recently with a scrap of paper filled with
handwritten calculations. Sweat beading on his forehead, he
pleaded for a chance to prove how staking him the equivalent of
$63 to purchase 50 chicks and material to build a henhouse could
save his life.
"If I sell them, I will realize 900,000 kwacha, enough to buy the
medicine," he said urgently, trailing after a visitor. "I will
come back tomorrow."
Ms. Malenga, a 38-year-old mother of three, says she understands
his panic. Her own family rejected her once she began to display
symptoms of AIDS. She slept in the bus station on a piece of
cardboard, surviving by selling oranges. Because her skin rashes
and enlarged lymph glands scared away customers, she said, she
had to sit at a distance from her fruit at the market.
A British doctor who treated Ms. Malenga at an AIDS clinic per-
sonally assumed the cost of her antiretroviral treatment in Feb-
ruary. Otherwise, Ms. Malenga said, she would have met the same
fate as the 27 men and women who were in her support group. The
last one to survive besides her died in September.
Ms. Malenga said her symptoms had quickly receded with the drugs
and she had gained 15 pounds. "I look beautiful," she said, show-
ing her even teeth.
She keeps the little white pill bottle in her purse at all times,
ever since it was once taken from her office. When she tracked
down the culprit, she said, the woman told her: "I took them be-
cause I want to be like you. I want life too."
"She died in April," Ms. Malenga said. "Sometimes I feel bad. I
feel guilty, because it isn't fair.'
Every impediment to halting the spread of AIDS on the continent
is present here. Doctors and medical equipment are in short sup-
ply. Officials say Zambia has just three machines, for instance,
that can measure immune cells - a basic test for an AIDS patient.
The stigma against AIDS is so pervasive that many Zambians prefer
to call the disease "slow puncture," a term that captures how
life ebbs gradually.
Until recently many blamed the government for lack of political
will as well as money, because its efforts were limited to a cam-
paign for public awareness and testing for its 10.6 million citi-
zens.
"We were asleep," said Brian Chituwo, the new health minister.
"We had a leadership in the past 10 years where there was total
denial from the highes t office. It's like we are just waking up
now and saying: `Hey! What has happened?' "
The answer is obvious, even in downtown Lusaka. Outside the main
market, curb-side hawkers peddle tombstones. The two cemeteries
are nearly full. AIDS patients occupy as many as 8 of every 10
beds at University Teaching Hospital, the country's largest. At
the Mother of Mercy hospice the bodies are sometimes stacked two
to a drawer.
According to the latest estimate by the United Nations, 120,000
Zambians a year die of AIDS. In one province the number of agri-
cultural extension workers has fallen to 8 from 41. Zambia's
schools lost more than 3,300 teachers from 1996 to 1999, mostly
because of AIDS.
"We spend all this time training people," Vice President Mumba
said, "and by the time they get to the first tier of their ca-
reers we are ready to bury them."
Rosemary Musonda, acting head of the government's AIDS council,
said Zambia needed to train doctors and open and equip clinics
before it could begin to treat patients in any real number. If
the government hands out drugs without monitoring the patients,
she said, it risks developing drug-resistant strains of the dis-
ease.
"We are not into giving everyone drugs like sweets when we can't
monitor what will happen," she said. "Even in Britain there are
waiting lists."
Such words sound more than harsh to Mr. Kabaso, who has tried re-
peatedly to sign up for the government's treatment program, only
to be told there are no drugs "until further notice."
His daughter's medical records show that she has been battling
infections nearly her whole life. The children in the neighbor-
hood will not play with her. At school, her father said, pupils
point to the rash on her face, saying: "You are the only one with
that. You must have AIDS."
He lost his job as a driver when he missed too much work. In Sep-
tember he had to skip his antiretroviral pills to buy food, he
said. Now he runs the risk that the medicine will not work when
he resumes taking it.
A half-hour's drive from Mr. Kabaso's neat brick house - testi-
mony to his once steady employment - another dreadful choice has
prolonged the life of Janet Phiri, 25, a mother of three. She is
receiving free antiretroviral drugs from the Mother of Mercy hos-
pice, essentially because she volunteered to help bathe and feed
the other patients. Her husband, Kennedy, who is also infected,
is not, because there was no money left for him.
Sister Martha Muyambo, an outreach worker, says she fears that
Mr. Phiri is reinfecting his wife by not using condoms. She tells
him he is infected, she said, but he says his own glaring symp-
toms are those of malaria.
"It could be he feels some resentment because his life can end at
any time," she said. "And hers will go on."
--
Dr Rana Jawad Asghar
Program Manager Child Survival, Mozambique
Provincial Coordinator Sofala Province, Mozambique
Health Alliance International, Seattle, WA, USA
http://depts.washington.edu/haiuw/
Coordinator South Asian Public Health Forum
http://www.saphf.org
mailto:jawad@alumni.washington.edu
http://www.DrJawad.com
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