When Micheline Leon was diagnosed with
HIV, her parents told her they would fit her for a coffin.
Fifteen years later, she walks around her two-room concrete
house on Haiti's central plateau, watching her four children play
under the plantain trees. She looks healthy, her belly amply
filling a gray, secondhand T-shirt. Her three sons and one daughter
were born after she was diagnosed. None has the virus.
"I'm not sick," she explained patiently on a recent afternoon.
"People call me sick but I'm not. I'm infected."
In many ways the 35-year-old mother's story is Haiti's too. In
the early 1980s, when the strange and terrifying disease showed up
in the U.S. among migrants who had escaped Haiti's dictatorship,
experts thought it could wipe out a third of the country's
Instead, Haiti's HIV infection rate stayed in the single digits,
In a wide range of interviews with doctors, patients, public
health experts and others, The Associated Press found that Haiti's
success in the face of chronic political and social turmoil came
because organizations cooperated and tailored programs to the
country's specific challenges.
Much of the credit went to two pioneering nonprofit groups,
Boston-based Partners in Health and Port-au-Prince's GHESKIO,
widely considered to be the world's oldest AIDS clinic.
"The Haitian AIDS community feels like they're out in front of
everyone else on this, and pretty much they are," said Judith
Timyan, senior HIV/AIDS adviser for the U.S. Agency for
International Development in Haiti. "They really do some of the
best work in the world."
Researchers say the number of suffers was initially lessened by
closing private blood banks, and statistically by high mortality
rates - an untreated AIDS sufferer in Haiti lives eight fewer years
than an untreated American.
Well-coordinated use of AIDS drugs, education and behavioral
changes such as increased condom use have kept the disease from
surging back, at least for now.
Statistics are notoriously unreliable in this country of poverty
and lack of infrastructure. The most telling data would be the
number of new infections in a given year, but researchers say such
a precise count is impossible.
Next best is to estimate the infected as a percentage of the
population. From 1993 to 2003, only pregnant women were tested, and
their rate of infection dropped from 6.2 percent to 3.1 percent,
according to GHESKIO and national health surveys.
Researchers now test men and women aged 15 to 49, and the
official rate is 2.2 percent, according to UNAIDS.
That's still far higher than in the developed world, but it's
lower than the Bahamas, Guyana and Suriname, and much lower than
sub-Saharan Africa, where the rate averages about 5 percent but
spikes to 24 percent in Botswana and 33 percent in Swaziland.
But the crisis is far from over. In the Artibonite Valley, where
Boston-based Partners in Health is just now setting up two clinics,
the estimated infection rate is 4.5 percent.
Some in these remote regions still look for care from Voodoo
priests, who ask for large sums of money or goods and use
treatments doctors say can be poisonous.
Thanks in large part to UNAIDS, which awarded Haiti its first
grant in 2002, and $420 million from the U.S. President's Emergency
Plan for AIDS Relief, or PEPFAR, an estimated 18,000 people are on
AIDS drugs, most of them administered free through GHESKIO and PIH.
That population represents 40 percent of those whose white blood
cell count is low enough for them to need the drugs. It is a high
percentage for the developing world, but still fails to help many
too remote to reach medical care or those at for-pay public
Still, Haiti has been sufficiently ahead in prevention,
diagnosis and treatment for some of its programs to serve as models
for PEPFAR, the program launched by President George W. Bush in
2003 and praised for its work in Africa.
GHESKIO co-founder Dr. Jean W. Pape was awarded the French
Legion of Honor for his work, and PIH's Paul Farmer was recently
named chairman of Harvard Medical School's global health
department. In May, Haiti was honored as the host of the opening
ceremony of the 2009 International AIDS Candlelight Memorial.
In a country suffering from political upheaval and natural
disasters, where three-quarters of the people can neither afford
nor access private clinics or fee-based public hospitals, few could
have imagined at the dawn of the AIDS crisis how far Haiti would
When some of the first confirmed cases of the strange new immune
deficiency disease were found in Haitian migrants, the country was
hastily and unscientifically pegged as the main breeding ground, or
maybe even cause, of AIDS. Experts predicted a third or more of its
population would be wiped out.
The U.S. Centers for Disease Control deeply offended the country
by listing Haitian nationality alongside hemophilia, homosexuality
and heroin use as primary risk factors - nicknamed "the four
H's." There was speculation that slum squalor or Voodoo ceremonies
were responsible for the scourge.
By the mid-1980s the CDC's risk-factor list was amended, but the
damage was done to Haiti's dignity and to tourism, then its
second-largest industry, which collapsed and never recovered.
Yet the stigma may be what motivated Haiti to fight the disease
harder, uniting squabbling officials and divided donors in a common
cause, said Pape, the Haitian-born, Cornell-educated physician who
helped found GHESKIO in May 1982.
GHESKIO was founded two months before the disease even had a
name, hence its unwieldy French acronym for "Haitian Group for the
Study of Kaposi's Sarcoma and Opportunistic Infections."
Speaking in an office filled with health studies and signed
photos from U.S. presidents, Pape said efforts to close unregulated
blood banks, treat the sick and reducing mother-to-child
transmissions helped curb the epidemic.
Partners in Health was founded in 1983, by two Haitians and two
Americans including Farmer, as a small clinic treating infected
people in the desperately poor hillside community of Cange.
Its "accompagnateur" program, in which local workers including
HIV patients are paid to help the newly diagnosed adhere to
physically taxing medication regimens and prevention measures, has
been duplicated in Africa. So has GHESKIO's work, such as
distributing phone cards to patients to keep in closer touch with
Obner Saint-Valain is an accompagnateur who looks over seven
patients including Marie-Lourdes Pierre, a blind 55-year-old
Blanchard woman who has lived with the virus since 1999. For that
work he is paid $54 a month.
"If you're giving medication to a patient, you can't be scared
of them. If the patient becomes worse, it's me that picks them up
and puts them in a car to the hospital," he said.
While many of Haiti's more than 9 million people cannot afford
care in hospitals that require them to provide everything from
medicine to latex gloves for their doctors, HIV patients get
cutting-edge treatments for free.
Meanwhile, education campaigns spread the word on prevention
measures. More than 51 million free condoms have been shipped to
the country of since 2004 and are advertised everywhere on street
murals and corner store signs.
"More Haitians know about modes of transmission than high
school students in the U.S.," Pape said.
It was in 1994 that Micheline Leon made the 30-kilometer
(20-mile) trek from her home in Blanchard over crumbling roads to
the stone-walled campus of Zanmi Lasante, the Creole name and
flagship operation of Partners in Health.
Something felt wrong with her pregnancy - the baby was too low
in her belly, she said. The baby was fine, but Leon tested positive
in the HIV test given to all expectant mothers.
"My family lost hope. They thought I was already gone," she
Through care, counseling and a lot of social assistance -
Partners in Health also helped build her tin-roofed, concrete house
- Leon survived. She is also a paid PIH accompagnateur, working
mostly with tuberculosis patients.
Treatments, which in her later pregnancies included AIDS drugs,
prevented the virus from passing to her children, and she was
discouraged from breast-feeding. PIH stands by the practice though
some AIDS doctors say that's unwise in countries like Haiti where
food is scarce.
Pape envisions a Haiti where the prevalence rate will dip below
1 percent. Timyan of USAID believes the rate has essentially
stabilized but will not rise again.
Leon's parents never did buy that coffin. For her, fear and
shame have been replaced with pride and confidence.
"I'm not scared anymore," she said.