Briefing on Haiti, No 6, July 2002

THE RIGHT TO LIFE FOR PEOPLE LIVING WITH HIV/AIDS IN HAITI

By: Roosevelt Jean-François, Journalist and member of the Centre for Communication on AIDS (CECOSIDA)

The provision of care, including access to medical care, is a serious challenge for people living with HIV/AIDS (PLWHA) in Haiti.  The reasons for this are particularly related to the economic situation of the country, which suffers from acute unemployment and effects of the contraction of the global economy during the recent years, according to trends and figures published by the Haitian Institute of Statistics and Informatics.

However, in addition to medicines and the provision of direct care, several experts think that the best assistance lies in the social reintegration of the infected person.

It is unanimously recognized that an infected person is often not accepted at home because he/she becomes an extra burden for the family.  He or she doesn’t contribute.  That is the reason why, it is said, it should be avoided to leave such person totally dependent on others, but have the Government do more for him/her.

“You don’t need to have a lot of money.  What is important is human assistance, especially when one feels physically and mentally weak: it is good to know that you have someone on whom you can count,” Adeline Benoit says, a professional pastry cook, who had to stop her profession after learning about her infection, in order not to be ostracized.

 “Being infected by HIV isn’t the end of life. I don’t want to compare the United States to Haiti, but access to medical care is not a gift in this country.  It is the fruit of the constant work of all the people and organizations which bring together people living with HIV/AIDS (PLWHA).  It is a battle for having the right to life.”

This is the lesson that the seropositive Saurel Beaujour draws of his participation (in October 2001) in a programme of international visits to the United States, where infected people benefit from a specific budget for their access to health care and medicines, and where the private firms are heavily involved in the battle against HIV/AIDS.

43 years old, electrician by training, Beaujour has been for several years the leader of the Association for National Solidarity with people infected and affected by HIV/AIDS (ASON), which has about fifty active members.

According to him, in addition to the need of being involved in a constant institutional battle, following the example of several other countries, PLWHA have an important role to play in activities which aim to stop the spread of the virus and to promote the access of infected people and affected families to care.

“When an infected person meets another infected person like himself, dialogue and empathy take off easily.  One has nothing to hide.  For, we are in the same situation,” he says.

Saurel Beaujour is very active in activities against HIV/AIDS at the Caribbean level.  He has participated in several meetings in Trinidad and Tobago concerning PLWHA, where there is an annual meeting of Caribbean PLWHA.  “For 3 years now, we have been present at this meeting organized by the Caribbean Regional Network, which gives us the opportunity to exchange information with our Caribbean colleagues,” he explains.

“My presence in these meeting has been very useful because of the fact that I could observe infected people like me involved in the fight in other Caribbean countries, which share the same mores and customs as Haiti,” he says during an interview.

A not-very-welcoming environment

The solidarity among people living with HIV/AIDS is all the more necessary as they generally have to function in an environment which is not very favourable.

“Living with AIDS in Haiti is very difficult. Even the street is a nightmare, with all its detritus which weakens our immunological system even more,” Adeline Benoit explains.

Adeline Benoit confides that the socio-economic environment traumatizes her: an overflow of stress when she waits for a tap-tap (public bus) and subsequently when she has to make great efforts to find a place to sit down; the long waiting time for PLWHA at the doctor’s; the discrimination of which PLWHA are the object in general society; and so on.

Esther Boucicault, another Haitian seropositive, thinks that the private commercial sector can help directly by granting scholarships to children of PLWHA.

“When one has personal frustrations, such as not having a place to live, or not being able to send his or her children to school, how can you honestly ask that person to commit him/herself to saving other people?” Mrs. Boucicault wonders, pointing out that the environment is difficult and that the education of the population has not been done as yet.

She remembers the case of a young man in Saint-Marc (about 96 kilometers North of Port-au-Prince) who, following the Caravan of Artists and Youth against AIDS in the year 2000, declared himself infected.  He was booed, avoided in his neighbourhood and very nearly lynched.  Also, as he was accused of transmitting his AIDS to people around, he was forced to leave the neighbourhood.

“I do not want that, only after my death, people are going to talk about the great efforts of the Esther Boucicault Foundation and about the great courage of this little lady.  While I’m alive, I want to see this Foundation bloom by helping others, as my daughter Michele told me: ‘Mom, while saving other people, you will be saved’.”

Advocacy

For the people living with HIV/AIDS, solidarity groups constitute an ideal discussion platform to help with specific questions, such as access to care, treatment of opportunistic infections, the support and training of the family, of friends and other priority needs, such as food, medicines and work.

Very well informed and very useful in the activities of the « Fondation promoteurs de l’objectif Zero-SIDA (POZ) »[Promoters of the Objective Zero-AIDS Foundation] where she works, Adeline Benoit pleads tirelessly for the full access of PLWHA to the labour market.

“If I tell you that I am ill, you should have special consideration towards me.  More precisely, PLWHA should have special buses at their disposal, or at least priority in public places.”

Numerous countrymen, who during the military coup d’etat (September 1991 – September1994) requested political asylum in the United States had to face the shock of discovering their sero-positive status through the tests which were carried out.

This was the case with Saurel Beaujour who was a community development worker at the « Centrale Autonome des Travailleurs Haitiens (CATH) [Autonomous Union of Haitian Workers], a job which sent him to several geographical departments of the country in order to create and train trade union peasant groups.  In order to escape the political persecution of supporters of the defacto Government, he opted for political asylum in the United States, he explains.

“My greatest problem was to announce to my wife that I was HIV positive.  I was forced to tell her the truth, because she knew about the various steps undertaken to obtain political asylum in the United States.  It was very sad in the family.  And it was there that the battle started,” Beaujour says.

“It was a shock for me to learn that my test was positive.  I could not believe my eyes.  I redid the test five (5) times before accepting the result,” he tells, looking at the ceiling.

Psychologists later advised all the people infected by HIV assemble themselves within an association.  This was later created under the name of ASON.

A most-important event

On 21-23 April 1999, in Petion-ville, the Foundation POZ in partnership with Plan Haiti and the Panos Institute organized a large event aimed at encouraging people living with HIV/AIDS to break the silence, to come out of obscurity and accept their sero-positivity without fear for their human dignity.

Health professionals, journalists, religious and political leaders, and others who participated in the forum, publicly expressed their desire to “draw the attention of the entire Haitian society towards the needs of the people living with HIV/AIDS in terms of care, support and consideration.”

Putting the emphasis on the situation of exclusion and discrimination of which people living with HIV/AIDS are victims, they called on public authorities to create a climate of justice and equity which promotes their well-being.  They also urged authorities involved in the battle against AIDS to make use of the experience of PLWHA in the fields of education, information and support.

The final declaration of that first forum of solidarity with PLWHA invites, indeed, the PLWHA to stop considering themselves as victims, but rather to adopt positive and responsible attitudes, in order to take control of their lives.

Results

Following this assembly in 1999, several networks were created, among which the Centre for Communication on AIDS (CECOSIDA), composed of journalists.  The forum marked a crucial turning-point in the battle against AIDS in Haiti, according to Dr. Eddy Genece, the Director of the Foundation POZ.

“The sensitizing of decision-makers started there.  The National Strategic Plan has a component which grants a rather important place to aspects of care and support.  Now we have many more people living with HIV/AIDS who have publicly declared their status.”

The Strategic Plan of the Ministry of Public Health and Population grants also an important place to the voluntary testing, for which there are several centres available throughout Haiti.  Several institutions, such as the POZ Foundation, have established support and counseling units for PLWHA, in order to accelerate the testing work.

“We carry out tests.  In the case where the tested person is tested negative, we will with his/her collaboration provide some follow-up: that person leaves our office with a lot of information and we invite him/her to send us his parents and friends.  In case where the result of the tested person is positive, we invite him/her to participate in support groups, called by us ‘community mutual aid groups’,” Dr. Génécé points out.

Prevention kits are given to the members of community mutual aid groups, each group averaging about fifteen.  These kits contain 7 or 8 articles of daily use such as: tooth past, tooth brushes, razors, vitamins, condoms, and bactrin (an antibiotic).

Already since 1998, even before the Forum was held, the POZ Foundation created support groups named “GIPA” (Greatest Involvement of People Living with AIDS), which in particular were involved in advocacy, in view of the limited resources.

The “Blue telephone” was created during the same year.  This permits thousands of people, in majority young people from the capital and the main provincial towns of Haiti, to inform themselves, in anonymity and without a need to travel, about HIV infection, sexuality and family planning.

“The POZ Foundation toys with the idea of making this service available 24 hours a day, in order to have people who are busy in the morning or who have no telephone benefit from it also,” Magalie Cherenfant, the person in charge of this programme, says.

Responsibility and discipline

Esther Boucicault is the infected woman most openly involved in the battle against the spread of the epidemic and for the provision of care for infected and affected people in Haiti.  She regrets that not all people can have access to medicines, although she underlines that the way medicines are taken requires a very strict discipline.

“It would be good if everybody could have access to medicines,” Boucicault says, but, according to her, a “continuous education campaign” is necessary.  “The infected person must be taught to measure out the doses of medicines well, to take them on time, to know his/her body and, above all, to face the secondary effects.  In most cases, the infected person needs a social worker to support him/her, to follow the development of his/her health, secondary effects, to control the tests like CD-4, viral charge.  A regular general check-up is necessary,” she adds.

“I have never stopped taking medicines.  Over time, I developed a certain resistance to some medicines.  I had to travel to do a check-up and the doctors gave me new medication. Now I am taking Ziagene, Viracept and Sostivan.  I swallow 7 pills in the morning and 10 at night. It takes a strict discipline to take these medicines.  For example, I know that I cannot take Sostivan after  a meal, because, in order to dissolve in the body  this medication must not meet fat,” Esther Boucicault underlines, mother of two daughters of which one is HIV positive.

“These medicines develop secondary effects.  I have cramps in my feet.  I suffer from cholesterol, diabetes and I have high blood pressure.  I take my insulin twice a day: 35 milliliters in the morning and 15 milliliters at night.  And I eat lots of salads and fruits.  I eat neither beef nor pork.  I eat local chicken, but no imported chicken which contains too much hormones,” she pursues.

Unlike Esther Boucicault, Saurel Beaujour chooses not to take the anti-retroviral medicines.

“I take vitamins.  I learned to know my body.  I know that as soon as an infection comes up I must go to a doctor.  And I do much to prevent against tuberculosis,” he indicates.

“The most important thing is to know that you are important.  And that life goes on.  Also to have a responsible sexual behaviour.  You can be re-infected and die faster.  One has to be positive.  I would very much like to see my three children grow up,” the chief of ASON concludes.

Providing care

“Sometimes, even the Doctor traumatizes you.  It is better to keep silent and tell nothing about your seropositivity if that is not necessary,”  Adeline Benoit says.

Fortunately for her, a group of women of her church helped her to get back on her feet, to fight against the sadness which could be read on her face, and to become a member of the Consultative Council (CAB) of GHESKIO Centres (Haitian Group for the Study of the Karposi Syndrome and of Opportunistic Infections) where she has found care and regular medication.

“Each time when I have to go to GHESKIO Centres,  it is like a blessing from heaven.  GHESKIO helps numerous people to live with the illness by relieving them of opportunistic infections.  But the environment is very difficult with hundreds of patients every day.  You receive medicines in small sachets which are not always well packed.”

Since 1980, CARE has been a militant in the field of HIV/AIDS in several regions of Haiti.  This American NGO actively takes part in prevention programmes, as well as in an integrated programme of care for PLWHA.  In 1999, it started a pilot training project in the Grand’Anse  (South-West of Haiti), in partnership with the Ministry of Social Affairs, in order to directly amplify the voices of communities, through the Community Health Units (UCS).

On the other hand however, Esther  Boucicault notes that most hospitals do not accept to keep PLWHA.  As soon as the hospital finds out that a patient is HIV positive, it orders its staff to send him/her out immediately.

“Here is a big responsibility.  You very well know that the person is infected, and the person knows it also, and you let him/her go out without listening to your conscience.  This person is going to continue to live and infect other people,” she states.

ASON is involved in a programme of home care for PLWHA in a poor area adjoining an affluent residential zone in the hills of Port-au-Prince (Freres).  For almost a year, the organization Plan Haiti has run this initiative in Freres where constant domiciliary visits are paid to the PLWHA.  During those visits, the infected people receive a kit of medicines and some products of first need.  But, the most important thing is the ability for ASON councilors to be with the infected person in the presence of his/her family and in this way to reinforce social bonds.

Tritherapy : limited availability

“Today  we are able to offer the tritherapy to the volunteers taking part in the vaccine trials, even when this method is not the standard of care in Haiti or in the region,” Dr. William Pape declares, Director-General of GHESKIO Centres, the main institution of research and care for PLWHA.

Dr. Pape doesn’t conceal his apprehension regarding these volunteers, who in light of availability of treatment, could expose themselves more to an HIV infection by adopting risky behaviours, as  has been documented in the United States.

“The tritherapy doesn’t begin immediately after an infection by HIV has been documented.  For many reasons, among which the shortening of the observance period on the taking of medicines and problems related to medicinal resistance, the tritherapy is only administered at an advanced stage of the disease.  A patient needs to remember that receiving this dose doesn’t bring healing, AIDS still remains an incurable disease.  For this the need to adopt safe behaviours,” the Director-General of GHESKIO Centres recommends.

More private clientele

Although the cost of medicines has passed from US$1,250.00 to US$150.00 per month, depending on what is available on the local market, the great majority of Haitians living with HIV cannot afford to buy the medicines.  An estimated budget of around three (3) million United States dollars is needed to allow a wider circulation of antiretroviral medicines in the country.

“We are very late regarding this subject.  The national programme is particularly focused on prevention and the agreed activities for providing care and support date back only two years.  Until now, sponsors have not listed care and support in their financing priorities,” Dr. Eddy Genece of the POZ Foundation, notices.

Having no experience in the domain of providing antiretroviral medicines, which requires a particular expertise, POZ doesn’t intend to involve itself, except for having a partnership programme with other institutions working in this field.

However, “the dissemination of information and the downturn of the price of medicines are among the factors which explain a constant rise in the number of PLWHA visiting private clinics.  There are patients with financial means who can pay for private services related to their seropositive status,” Dr. Damocles Patrice Severe of GHESKIO Centres reveals.  He is a specialist of infectious diseases and the provision of care regarding STI/AIDS.

Some doctors who prefer not to reveal their identities declare themselves in favour of the establishment of facilities for the production and sale of generic medicines, following the example of several countries such as Brazil and Argentina.  In professional circles related to the health sector, « the interest » for manufacturing generic medicines by several pharmaceutical firms and Haitian laboratories is known.

Houngans (voodoo priests) and natural medicine

“During recent years, people in Saint-Marc have seen me very ill, as well as recovered.  I have a strong impact on them, because there are some taboos that we have brought out,” Esther Boucicault, who leads a Centre bearing her name, declares.

The Esther Boucicault Foundation works with houngans and very often participates in training courses for medical personnel of the Saint-Marc Hospital, with the assistance of several institutions such as POZ and Family Health International (FHI/IMPACT).

Esther Boucicault considers it necessary to seriously involve the voodoo priests in the battle against AIDS.  Often, doctors do not feel able to inform patients of the results of tests who, according to their belief, think that they are the prey to « evil spirits ».

A person who has shingles can believe that he/she is affected by a « mort petit bébé » (the spirit of a dead little baby) evoked on him/her.  In his/her mind, whenever the baby tosses and turns, the shingles extend further on the skin.  In such cases, it’s preferable to make the houngans aware of the situation so that they can recognize the illness and talk openly about it, all the more as there are risky practices in these circles, Mrs. Boucicault specifies.

“Until now, a great part of the population does not go to the doctor for ordinary diseases, let alone for AIDS which remains an enigma even for the scientists,” Jacob Pierre, 54 years old, indicates.  He has a peristyle(voodoo temple) in Carrefour-Feuilles (a suburb in the South-east of the Haitian capital) and is very active in an association of houngans.

Jacob Pierre doesn’t pretend to treat AIDS, but he says that as soon as a person feeling sick comes to see him for consultation, he « throws water » (expression used in Haiti in the practice of invoking the spirits) to see what the person is suffering from.

Voodoo priest Pierre speaks  in favour of natural medicine and of the virtue of plants, as well as the relationship of the human being with his environment.

“Everything is in nature, you just need some knowledge to ask mother nature to solve certain problems, including AIDS.”

Asked about the costs of treatment in his peristyle, he says that his work has no price and it is up to the treated person to give what he has got.  Most patients want to hear the opinion of the voodoo priest whom they trust more than the doctor, Jacob Pierre adds.

Perspectives

The authorities grant a great priority to the battle against HIV/AIDS.  “We are very aware of the situation, and with restricted means we do the best we can to control and limit the spread of HIV/AIDS in the country, in partnership with Haitian civil society organizations and with the assistance of international institutions,” Dr. Henri Claude Voltaire, the Minister of the Public Health, declares in an interview.

“We are in a country where everything is a priority,” he says, continuing with: “the battle against HIV/AIDS is the affair of the whole country and not only the government, because poverty, the high rate of illiteracy and unemployment are among the factors which make the population much more vulnerable to this virus, which kills numerous people everyday and leave a lot of families in mourning and disarray.”

“We are asked to combine our strengths and join the efforts of the national and international scientific community in order to find appropriate solutions to the disease, which has serious social economic consequences,” the Minister Henri Claude Voltaire pursues.

It remains to be determined which mechanisms should be established to ensure the appropriate follow-up to the national strategic plan on AIDS, notably regarding the issue of providing care and the access of PLWHA to medical treatment.

Even although the price of medicines has been lowered substantially after agreement was reached with pharmaceutical laboratories, the access to financial resources for assisting PLWHA remains a problem not to be neglected.  For, not only must the funds available for anti-AIDS programmes have been utilized within several years, moreover the existing amount can only provide care for very few PLWHA, with difficulty.

Nevertheless, in general PLWHA can nurture a lot of hope because of the already effected decrease in cost of medicines on the market.  The vaccine trials, which started in Haiti in 2001, have begun to bear fruit and appear to have much more promising results than those obtained in the same trials in Trinidad and in Brazil, according to attested information.  Additionally, the rate of vertical transmission seems to have decreased a lot in Haiti, based on the efforts extended by certain institutions working with PLWHA.

Within this context, it is important to note that ASON intends to organize advocacy activities with jurists in Port-au-Prince, in order to establish legislation to protect the rights of people living with HIV/AIDS, according to Saurel Beaujour.

Some reference institutions

Association for National Solidarity (ASON)

16, rue Malval, Turgeau

Port-au-Prince, Haiti

Tel: (509) 555-2219

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Haitian Medical Association (AMH)

33, 1ère Avenue du Travail

Port‑au‑Prince, Haiti

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

CARE

92, Rue Grégroire

Pétion-ville, Haiti

Tel: (509) 257-1571/5358/5389

Fax: (509) 257-6785

Web site: www.care.org

Centre for Communication on AIDS (CECOSIDA)

c/o POZ

2, rue Tertulien Guilbaud, Bourdon

Port-au-Prince, Haiti

Centres GHESKIO

(Groupe Haïtien d’Étude du Sarcome de Karposi et des Infections Opportunistes)

33, Bicentenaire

Port-au-Prince, Haiti

Tel: (509) 222-0031/2241

Fax: (509) 223-9044

Web site: www.gheskio.org

Catholic Relief Services (CRS)

1, Delmas 81

B.P. 1118

Port‑au‑Prince, Haiti

Tel: (509) 249‑1992/ 510‑4586

Family Health International/IMPACT

83, rue Lambert/Rigaud

Pétion-ville, Haiti

Tel: (509) 257-9100 

Foundation Esther Boucicault Stanislas (FEBS)

24, Rue Bonnet

St. Marc, Haiti 

Tel: (509) 279-9144/9165 

Foundation Promoters of the Goal No-AIDS (POZ)

22, Rue Carlstrom

Port-au-Prince, Haiti 

Tel: (509) 245-2308/244-4024 

Haitian Institute for Childhood (IHE)

41, Rue Borno

B.P. 15606

Pétion-ville, Haiti

Tel: (509) 257-3101/ 1508/ 510-8438

Maison Arc-en-Ciel (Rainbow House)

Rue Beaulieu, Boutilliers

Pétion-ville, Haiti

Tel: (509) 246-5596 / 557-2948

E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Ministry of Public Health and Population (MSPP)

Palais des Ministères

Champ de Mars

Port‑au‑Prince, Haiti

United Nations Children Fund (UNICEF)

17 rue Armand Holly, Debussy

B.P. 1363

Port-au-Prince, Haiti

Tel: (509) 245-1404/1424

Fax: (509) 245-1877

Pan American Health Organization / World Health Organization (PAHO/WHO)

295 Ave John Brown/Lalue

B.P. 1330

Port‑au‑Prince, Haiti

Tel: (509) 245‑0764 /8666/ 8695

Fax: (509) 245‑1732

Plan Haiti

Impasse Lily No. 3, Rue Stephen

Delmas 60

Port-au-Prince, Haiti

Tel/Fax: (509) 256-1438 / 4229

Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.