By Sokari Ekine | with thanks to BlackLooks
Thursday, July 25, 2013.
Long
before 9/11 and the subsequent incarceration of hundreds of so called
terror suspects in Guantanamo Bay, thousands of Haitian refugees fleeing
the military junta in the early 1990s, were detained on the US base. Many of those detained were detained because they were suspected of being HIV Positive.
The
marking of Haitians as carriers of AIDS goes back to the early 1980s
when the Center for Disease Control (CDC), identified four high-risk
groups, known pejoratively as the 4-H club - homosexuals, hemophiliacs,
heroin users and Haitians This was the first time a disease was tied to
a nationality - but not the first time black bodies - which have been
tied to racist notions of deviance and contagion and of being a threat
to whiteness. [1]
The first documented case of HIV
in Haiti was from the Clinique Bon Sauveur in the Central Plateau in
1986. Within two years the clinic had introduced a program of free
testing, counseling, condoms, HIV education and prevention. By the early 1990s
25% of admissions were related to HIV and by 1995 this had risen to
40%. Two other medical centers have been at the forefront of HIV/AIDs
and TB in Haiti; the GHESKIO Center in Port-au-Prince, is a global pioneer in HIV/AIDS research and treatment and Partners in Health
which has run an extensive preventative and treatment program for the
25 years. Both must take considerable credit for the massive decrease in
in the HIV+ rate from 9.4% in 1993 to 1.8% in 2011
with an estimated 51% of whom are women and 12% children. Even with
the disruption to treatment caused by the January 2010 earthquake the
infection rate continued to decrease.
The
underlying and most significant contributory factor to both the spread
and death from HIV/AIDS and TB in Haiti is not lack of awareness or
failure to follow medication regimes as policy official tend to argue,
but life shortening conditions, that is the material conditions and
structural violence under which people become infected.
Paul Farmer writing on Haiti describes structural violence as
“……..one
way of describing social arrangements that put individuals and
populations in harm’s ways! The arrangements are structural because they
are embedded in the political and economic organization of our social
world; they are violent because they cause injury to people ¦ neither
culture nor pure individual will is at fault; rather, historically given
(and often economically driven) processes and forces conspire to
constrain individual agency. Structural violence is visited upon all
those whose social status denies them access to the fruits of scientific
and social progress.[2]”
After
talking to dozens of patients, nurses, doctors and health officials
over the past six months, I am very much aware of the violence of
poverty which impacts on people in multiple ways. Rosi-Ann, Gustave and
Emile and their families are just three of millions.
I
met activist and youth worker Maxo Gaspard on 31 May 2013, during a
protest march against the lack of support for cholera victims and the
UN’s refusal to admit responsibility. Maxo is a former restavec
and now runs ARDTA - an organisation working with restavecs, street
children and teenage sex workers. Many of the young girls are trafficked
to the Dominican Republic and part of his work is to try to educate
families in rural areas on the dangers of giving their children away,
and to find homes for these girls.
One
of the girls, Rosi-Ann is 15 years old and lives in the Nazon district
of Port-au-Prince [PAP]. Rosi-Ann is a child. She is beautiful, shy
and at first it feels as if she is too full of shame to speak. We spend
hours talking; the conversation is slow at first but eventually it is
free and interspersed with smiles and laughter as her confidence grows.
Rosi-Ann was a restavec child originally from a poor family near Les Cayes
in the south of the country. When she was four her godmother brought
her to PAP where she suffered 10 years of physical and sexual abuse.
About a year ago, Rosi-Ann met another young girl who was already
working the streets after her father had died and her mother threw her
out. She told Rosi-Ann she should leave her godmother and join her on
the street. Now she lives in a Chambre Garson - room or house of men -
with a 19 year old man. She uses the room to work and gives the man
some of her earnings. Rosi-Ann says she always wants to use a condom
but sometimes the men are violent and beat and / or rape her. She is not
HIV+ but is aware of her extreme vulnerability and the repeated vaginal
infections, which are often left to fester before being treated, are a
warning of what could happen.
The
hope is that Maxo can first find a family to care for her and then take
her back to her village to search for her family. She knows she has
two older sisters but does not know if her mother is still alive as she
hasn’t seen her for 10 years. Maxo had a similar experience: he was
rescued by someone who came to visit the woman he was working for and
ended his misery. Now he wants to do the same for Rosi-Ann. But there
are thousands of young girls on the streets of Haiti’s cities and with
no support from the government or NGOS, people like Maxo and his
colleague Kethia, become despondent.
It’s
like looking at a 10ft wall and wondering how to climb to the other
side. After so many jumps no one can blame you for giving up.
Gustav
Renaud was born in Port de Paixs in the north, not too far from Cap
Haitian. He is 30 years old and came to PAP 6 months ago after falling
ill. He lives with his mother, sister, brother-in-law and their three
children in Camp Acra at Delmas 33.
His mother, Gustave Taliette, was the first to move to PAP 2 years ago
to look for work and was followed a few months later by her son-in-law,
Jonas, and then his family, altogether they are seven. The family was
given the tent by someone who moved out from the camp. This was better
for them as there is no rent to pay. Since arriving Jonas has only
managed to find a few weeks work here and there and much of the burden
for feeding the family has fallen on Mdm Taliette who occasionally finds
work washing clothes in the city.
Like
the dust in the camp, hunger is ever present in their lives. There is
nothing to do except to sit and sit some more as the day passes into
night. The day I first met Gustave, he was sitting in front of his tent
with his mother and some neighbours. On the ground in front of
Gustave’s tent are a few very old dusty shoes and bags laid out for sale
on a piece of equally old plastic. They reminded me of a still piece of
art moulded into the ground.
We
were meeting to talk about his TB. However, during the nearly two hours
we sat outside his tent, he hardly coughed although he was visibly very
ill. His hair has thinned out, and he was covered in dried sores. He
complained of feeling dizzy with headaches, diarrhea, vomiting and pains
in his legs. Gustav said he left his wife and two children in
Port-de-Paix because she threw him out when he became sick. Again I
found myself wondering if he was really HIV+ and possibly the TB story
was a cover. Since arriving he had been to two hospitals, Petit St Luke
in Tabarre and Kings Hospital in Delmas33, but he said he did not know
what was wrong with him. Although the consultations were free,
patients have to pay for the test results and since he had no money he
could not get the results. I asked him why he thought he had TB? He
said: “I am coughing and I am tired also my chest hurts.” He had been
given some medication but he didn’t know what it was and anyway it was
finished and this was months ago. It was difficult to really assess what
was happening. I explained to him that in Haiti everyone who has TB is
also tested for HIV and asked if he had had either test. He said no he
did not think so.
As
we sat and talked neighbours passed by along the narrow path between
the tents. Some kept walking others stopped to listen until asked to
please move on. At one point, Mdm Taliette got up and began walking
away. while later I noticed her return with a bucket of water. She
then sat down on a bench in front of the adjoining tent and proceeded to
undress to her underpants and bathe herself. I watched briefly as she
stared straight ahead and despite the circumstances of bathing in the
public glare, there remained a dignity and a defiance in her actions. I
looked at the others, no one was watching. There is no privacy in the
camp. No privacy to speak, not even for a 50 year old woman to bathe.
She must do so in front of her grown son, her son-in-law, neighbours and
strangers like me.
Later,
Mdm Tailette returned from bathing with a smile and a photo of Gustave
taken about a year ago. In the photo, he is a tall, 6-foot, 5-inches
heavy set young man, far removed from the wafer thin, balding aged
person sitting next to me.
I
was concerned that Gustave might be HIV+. I asked Gustave, his mother
and brother-in-law what they were going to do as clearly he needed to
see a doctor quickly. They said they wanted to go to a doctor but they
had no money so they had no choice but to sit and wait. No need to
wait, I thought, there is Dr Coffee!
A few weeks earlier I had gone to meet Dr Megan Coffee,
an American infectious disease specialist and a truly amazing woman.
She had come to Haiti a few months after the earthquake and stayed. Dr
Coffee runs a TB clinic in the grounds of the Hopital l’Universite
d’Etat d’Haiti (General Hospital) in downtown PAP. Her clinic consists
of three permanent tents laid out on concrete under the glaring 95
degree heat. The first tent is for in-patients, who are extremely sick
and near dying of TB and or HIV+. The middle tent, which is the
smallest, is a meager office consisting of a desk with an assortment of
drugs, papers, masks etc. A second desk with more assorted bits and
medical files; a camp bed behind a curtain and a wardrobe. There was
also a group of four Haitian nurses who are paid by the General Hospital
to assist in her clinic. She volunteers alongside the infectious
disease nurse and they survive on donations as does the clinic. Food
for patients is donated by various charities. The third tent, which is
really just a piece of tarpaulin shade, is for outpatients and their
families.
This
is the only dedicated TB clinic in PAP. On the day of my first visit
in which I arrived around 11am, there were six people crowded into the
small office-tent and the one fan blowing hot air did little to relieve
the heat. Dr Coffee hadn’t yet arrived so I took the opportunity to
speak to the other volunteer, the infectious disease nurse who had been
here for a few months. As we spoke she continued to work, emptying the
contents of various capsules into a mortar and mixing away. I was
fascinated and wondered if this was what chemists do behind pharmacy
doors or was this part of the makeshift world of healthcare in Haiti?
The nurse explained she was mixing the cocktail of drugs into
individual dose bags to make it easier for the patients to take. The
bags were for newly discharged out patients to take home.
Soon
Dr Coffee arrived in her usual outfit of long sleeved t-shirt,
over-shirt and broad rimmed hat to protect her from the glaring sun.
Patients immediately surrounded her as she spoke in an impressive
accented but fluent Kreyol. Eventually, with a few minutes to spare she
turned her attention to me and I rushed through my interview not
wanting to take time away from very sick people.
The
clinic started with just three patients and now treats 800 annually. At
present she has 70 bed-patients four of whom were near death. I asked
Dr Coffee what were her biggest challenges?
She
said: “Ensuring the patients take their medication. The patients have
their own challenges such as food and surviving so I have to stress the
pill is their life… missing it will lead to death.”
TB
patients burn excessive calories and they need a great deal of food but
at the same time they don’t feel the need to eat. Even when they are
eating they are still thin This is additionally problematic when people
are hungry and those coming to Dr Coffee’s free clinic are the very
poor. One positive system she has managed to create is a buddy system
where cured patients give back by returning to support sick patients.
This could be by helping to exercise patients, helping to feed them or
just keeping up their spirits.
Another
problem is because of poor material conditions under which patients
live; they wait until they are really ill before attending the clinic
thereby reducing their chances of full recovery.
The
majority of sick people I have met over the past six months have been
ill for weeks or months before they went to a clinic and often pregnant
women will only attend the hospital after they have gone into labour.
Even when hospitals are free people are still reluctant for fear of
being presented with a bill they cannot pay.
I
told Gustave and his family about Dr. Coffee. I explained she was a TB
specialist and all the treatment would be 100% free. All they had to do
was to get to hospital by 10am and she would see them. I explained that
he would have a TB and HIV test done and then wait and see what happens.
Everyone was happy with the suggestion and we said our goodbyes. The
next day I learned that Gustave and Jonas had gone to the clinic but
were unable to register. I frantically tweeted direct messages to Dr
Coffee who responded saying they must return immediately.
This
time I decided to go with them. We all met at the hospital and Gustave
registered, saw Dr Coffee and had his tests. It took a few more visits
but finally he received the news that he was HIV+ but did not have TB.
Now he has transferred from Dr Coffee’s clinic to the Hopital l’Universite d’Etat d’Haiti
as an HIV+ patient. At one point he was going to the hospital a couple
of times a week. Attending the hospital has been extremely difficult for
Gustave. He is weak from the illness which is exacerbated by food
insecurity and poor diet. It takes two buses to get to the hospital
which costs 100 gds which is 100 less to spend on food for the family.
The choice often becomes either the hospital or food to eat. One day
he was so weak he collapsed on the street and Jonas had to carry him by
motorcycle taxi. At this point it was hard to persuade Gustave to
return to the hospital as he said he no longer cared if he died.
If
Gustave was HIV+ then it was very possible his wife was also positive
and possibly their 3 year old son. When I asked him whether he had told
his wife, he replied she was positive and she had been taking
medication even before their son was born who is also positive. However
he continued to insist that he did not know he too was HIV+. His wife
remains in Port-de-Paix so there is no way for me to follow up on her
and the baby’s present health status .
Emile
Charles is 16 years old and is HIV+. His whole family died of AIDS
related illnesses: First his younger sister, then his mother and
finally his father. I had seen Emile many times during my visits to the
workshop at Delmas 33. He was one of the many young boys and girls who
made the shoes and jewelry for the camp shop. I was told he might be
HIV + and may also have TB as he was coughing a great deal. He is a
thin, intense young man with a soft gentle inquisitive face. He doesn’t
smile often but when he does, it’s like a burst of light.
Emile’s family were from Hinche
in central Haiti. He is not sure but thinks he was 6 when his father
died and he came to live with his uncle in PAP. His uncle did not allow
him to play with his own children and Emile had his own food utensils.
In 2008 or 2009 he became very ill and was taken to hospital where he
ended up spending a year. As a minor, Emile’s uncle would have been
told his status and it would be up to him to inform the child. He did
not do this. After he was released from hospital he was given a patient
card, medication and an appointment. But his uncle never took him
back and soon after that Emile was adopted by a neighbour, Jean-Louis
[Elie] Joseph who is now one of the main organizers of the Chanjem Leson movement at the Camp Acra.
Elie
had complained to the uncle about his treatment of Emile and in the end
the uncle told him to take the boy but he did not tell Elie about
Emile’s medical history. Soon after Emile moved in with Elie and his
wife Esther, the earthquake happened and they all moved to Camp Acra.Â
Emile was constantly sick and at one point was very ill with what Elie
believed was shingles. It seems that everyone involved suspected Emile
was HIV+ but no one made a decision to take him for a test, the main
concern being cost.
At
the time I formally met Emile he had again become ill with fever and
night coughs. It was at this point that the uncle who also lives in the
camp finally told Elie that Emile’s family had all died of AIDS related
illness and Emile told us he had spent a year in GHESKIO hospital so it
made sense for him to return there and continue his treatment. However
the hospital had no record of him ever being a patient.
To
understand some of the confusion I asked how a 6 or 8 year old child
supposed to know which hospital he had attended, how long he had stayed
or what medication he was given? The uncle possibly not wanting people
to know about his nephew’s status was not forthcoming with
information. Despite the decrease in HIV/AIDS and increase in awareness
and prevention, there remains a high level of stigma around the illness.
Eventually Emile’s guardians found out he had been in a hospital run by
nuns in Delmas 18 but the uncle could not remember the name.
By
this time 4 weeks had passed and Emile’s health was deteriorating
rapidly. Soon after I received a text message from my interpreter, Serge
Supre saying he was going to Delmas 18 to try to find out the name of
the hospital and to collect Emile’s records so they could treat him
again or refer him to the Hopital l’Universite d’Etat d’Haiti.. The
hospital turned out to be run by the Sisters of Mercy of Mother Therese
fame. But it was not a good ending.
The
overall context in which Gustave and Emile are trying to live with
their illnesses is compounded by the general insecurity and fear in the
camp itself. In April, someone claiming to be the owner of the land
threatened to burn down the camp unless everyone left. The following day
a fire broke out one section which everyone took as a warning. Camp
residents reported the fire and threats to the police who said there was
nothing they could [would] do. They then decided to protest against
the threats and lack of police action during which two men were arrested
and one died in custody. Chanjem Leson activists worked with the
family of the deceased and reported the police in question to the
Inspector General of Police. Since then they have faced daily phone threats from unknown men including repeated night visits to their tents.
The
whole camp is nervous and fearful of being evicted at any moment.
Emile’s adoptive parents, Elie Joseph and Esther Pierre have gone into
hiding and he is being cared for by Esther’s cousin Serge Supre. Serge
is unemployed except for the little he earns from interpreting, and
worries about how he will pay for his 18 year old daughter to finish
high school. Regular evictions have begun to take place around the city
and each night people go to sleep wondering if this will be their last.
This has also meant disruptions to the small craft and art workshop
and the school.
Gustave
has started ARVs and although the family is happy with his treatment
they want more than anything to return to Port-de-Paix – if we have to
be hungry better to be hungry at home than in PAP!
For
the first few weeks he responded positively to the medication and even
planned to find work and try to visit his wife and children. However,
over the past 2 weeks, he has deteriorated becoming aggressive, removing
his clothes and disappearing for days and worst of all, he has stopped
taking his medication. The stress of caring for him has taken its toil
on his family especially his mother for whom this is one burden too
many.
For
the past month, Rosi-Ann has stopped working and is being treated for a
vaginal infection whilst staying with her youth worker Kethia. The
plan is for her to travel to Les Cayes with Kethia and Maxo to begin the
search for her family but going home brings with it another set of
problems. Recently Maxo returned two teenager sex-workers to their
families in Jeremie but their families are extremely poor. Millions of
Haitians especially in rural areas are without food and adequate shelter
and the chances of the young girls staying is on balance – will they
stay and remain hungry or try to return to the city forced again to sell
their precious bodies? Altogether there are nine girls waiting to
return to their families.
Statistics
tell us the numbers of people living with HIV and dying of AIDS / TB in
Haiti has decreased dramatically over the past 10 years due to a
policy directed at prevention based on education and increased access to
treatment. But there are other realities excluded from official reports
and statistics. Rosi-Anne, Gustav and Emile, and millions like them are
forced to struggle to receive the most basic healthcare. Emile has
spent two months trying to get treatment and he is still waiting. It is
hard to say no one cares and even though I have followed him through
the repeated hurdles and I know we care, his family and his friends but
without money and without agency people like Emile and his family are
regularly treated with disdain. You attend the hospital and people
don’t even look you in the face preferring to watch TV or chat with
their colleagues. People treated as expendable non-persons!
And
Emile is doing badly. The hospital run by the Sisters of Mercy is now
in Carrefour but they refused to see Emile because his uncle gave
trouble.Serge tried to appeal to their mercy but in vain…..
“They
said they will do something for the poor but they cannot help Emile
because his uncle brought trouble. I would like to know who are the
poor – are we not poor, is Emile not poor and sick and a child?
Something must be done for him. At night he is crying and I dont know
what to do.  On Monday I will return to GHESKIO and hope they will
help. If not we have to go back to Dr Coffee.”
Emile
didn’t get to GHESKIO. Through a friend of a friend, he is now waiting
for an appointment at Dikini hospital in Kafou where they receive HIV+
patients. I hope he finally gets the treatment he needs.
1]
A. Naomi Paik œCarceral Quarantine at Guantanamo: Legacies of US
Imprisonment of Haitian Refugees, 1991-1994 published in Radical
History Review Issue 15 /Winter 2013].
2] Castro, Arachu and Paul Farmer, Infectious Disease in Haiti EMBO Reports 2003
[3] ARDTA – Asosyasyon Respekte Dwa Timoun – Ans Wouj [Association for the Respect for the Rights of Children]
* I have changed Emile and Rosi-Ann names because they are
minors
Sokari Ekine is a human rights activist, writer and award-winning blogger. She blogs at http://Blacklooks.org