by Sokari Ekine
Haiti’s AIDS rate has been in decline in recent decades, but extreme poverty and other forms of structural violence have put those infected on the razor’s edge of existence. The author follows the desperate lives of three families caught in the medical/social/political vortex.
Haiti, Obstacles to healthcare on the frontline of HIV
by Sokari Ekine
“The marking of Haitians as carriers of AIDS goes back to the early 1980s.”
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 have been tied to racist notions of deviance and contagion and of being a threat to whiteness. 
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 past 25 years. Both must take considerable credit for the massive decrease 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 officials 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 way… 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.” 
“Even with the disruption to treatment caused by the January 2010 earthquake the infection rate continued to decrease.”
After talking to dozens of patients, nurses, doctors and health officials over the past 6 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 31st May 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 the 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 she is feels 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 originally from a poor family near Les Cayes in the south of the country. When she was 4 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 streets. 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.
“There are thousands of young girls on the streets of Haiti’s cities and with no support from the government or NGOS.”
Gustav Renaud was born in Port de Paix’s 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 two 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 molded 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 was 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? “Because 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 neighbors 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. A 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, neighbors and strangers like me.
“He complained of feeling dizzy with headaches, diarrhea, vomiting and pains in his legs.”
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, 6ft. 5in 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'Haïti [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 4 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 family.
This is the only dedicated TB clinic in PAP. On the day of my first visit I arrived around 11am. There were 6 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 make shift 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.
“Her clinic consists of three permanent tents laid out on concrete under the glaring 95 degree heat.”
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?
“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 labor. 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 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'Haïti 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.
“Cured patients give back by returning to support sick patients.”
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 have 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 neighbor, 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. 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.
“Despite the decrease in HIV/AIDS and increase in awareness and prevention, there remains a high level of stigma around the illness.”
To understand some of the confusion – how was 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 Hospital l'Universite d'Etat d'Haïti.. 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 in 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.
“In April someone claiming to be the owner of the land threatened to burn down the camp unless everyone left.”
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 Gustave responded positively to the medication and even planned 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 to 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 sexworkers to their families in Jeremie but their families are extremely poor. Millions of Haitians, especially in rural areas, are without food and 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’s 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, and his family and friends care, without money and without agency people like Emile 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 don’t 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.
Sokari Ekine can be contacted though his web site, Black Looks.
1] A. Naomi Paik “Carceral 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
 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.