Removing some of the stigma of HIV/AIDS & building greater sensitivity
Medical
The government does not subsidize anti-retroviral drugs (HIV/AIDS medication) and so Dare to Care has to bear the full cost of these very expensive drugs. It is estimated that the cost of providing anti-retroviral therapy for each child per month is J$10,000. Based on this estimate it would cost the home approximately J$5.4 million per year for the supply of anti-retroviral drugs for all forty-five children. In addition to the supply of anti-retroviral therapy, the medical condition of the children has to be monitored once they are placed on these drugs. It is required that a CD4/CD8 test (gives an idea of the status of the immune system) be done twice yearly, costing J$6000 per child. This is an alternative or an addition to the viral load test (test the level of the virus in the body) that costs US$252 plus J$2000 per child. To date, the home has not been able to do any viral load testing because of the tremendous cost involved. However, they have been fortunate to get sponsorship from generous individuals for CD4/CD8 testing and so they have a fairly good idea of the medical condition of the children.
Education
Most of our children attend the Little Angels Learning Center, a school system operated by MSC and registered by the Ministry of Education. Three of the older children go to school in the surrounding communities. It is the Home's aim to send all of the children outside to school, to allow them the experience of being educated in the regular school system. However, this has somewhat presented a challenge for Dare to Care, as some school administrators are not willing to place HIV positive children in their schools as they believe that other parents would object to this and even in some cases pull their children from these schools.
Spirituality
A lot of emphasis is placed on the children's Spirituality, as Christ remains their main source of existence. The children are baptized Catholics and participate in daily spiritual activities as well as attending weekly church services. The spiritual activities include spending 20 minutes in the adoration chapel each day, saying the rosary as well as having morning and evening devotion. The staff members are also encouraged to take part in all of these spiritual activities.
Psychosocial
Most of our children are becoming aware of their HIV positive status as well as they are now acting out experiences in the past. Counseling sessions, other therapeutic activities are encouraged in the homes. Psychosocial support has proven to be the Home's biggest challenge, as psychological care for children in Jamaica is very expensive as well as limited. They are currently looking into the possibility of getting a full time counsellor for both homes as well as they are discussing the possibility of setting up a mentoring program for the children, where responsible and mature citizens play the role of big brothers or sisters, sponsor moms or dads with the hope that they would impact the lives of the children in a meaningful way.
Social Activities
Theatrical productions, movies, concert events, parks, and trips to the zoo are some of the ways the children enjoy life outside the home. Visitors and volunteers frequently spend time treating the children as well as just sharing with them. These visits and treats are encouraged so as to enrich the lives of the children, offering them experiences of kindness and love. This has also lifted the morale of the staff, as they are encouraged by the efforts of generous individuals to work with them to provide the best possible care for their children.
Successes Achieved
Children with HIV/AIDS are living longer and a better quality of life.
Dare to Care's biggest success is that of saving or prolonging the lives of children, who were before given a death sentence because they are HIV positive. Most of the children when placed at Dare to Care are usually at a stage of dying or in very bad condition. With the intervention of medication and love that the home provides, the majority of the children have made a complete turn around. Some 85% of them who are placed at the Home are living longer and relatively healthy and normal lives. The Home has not reported any deaths in the past two years.
One example of saving the life of a child is the story of our sixteen-year-old resident who came to the home three months pregnant. After being admitted to the home she was immediately placed on the mother to child transmission of HIV program at the University Hospital where she was treated with AIDS medication prior to delivery and where the baby was also treated for six weeks after his birth. Recent tests done revealed that the baby (who is now one year old) is HIV negative.
With the stigma attached to the disease children living with HIV/AIDS are usually mistreated and isolated from society and so many time they are not given a chance to live a normal life. That is, they are barred from schools if their status is known, they are treated with disdain and disregard by their communities and even by family and most of all they are orphaned by parents who have died from AIDS and/or abandoned by relatives who do not want to have any association with them. These children are usually developmentally delayed and emotionally and mentally scared.
At Dare to Care the children are treated like normal children, in that they are schooled, which will help with the developmental aspect of their lives as well as they are given a lot of love and attention by staff, volunteers and visitors. This is evidence by how happy and loving the children are. Children who were once withdrawn, sad and had given up on life are now happy and willing to fight to live.
The two older girls in the Home (ages 14 & 16) who contracted HIV/AIDS through sexual abuse are now in a safer environment where they can develop and grow and be children. They are currently being exposed to skills training as well as academics so as to prepare them for society where as young adults they can gain employment and live valuable lives. These girls are very much aware of their HIV positive status and have accepted it and are better able to deal with it because of the counseling they receive at the home. These girls are developing into strong individuals and are now expressing the desire to bring more awareness to the disease by speaking of their experiences.
Access to Treatment
Not too long ago HIV positive people were given a death sentence in that, treatment for the disease was either not available or too expensive. In recent times, more and more AIDS medication is becoming available to those infected at a cheaper rate. Lasco Pharmaceutical initiated the supply of generic drugs at a much cheaper rate than the competing brands; Lasco also donates about 20% of these important drugs to the Home. As a result, thirty-two of the children who were not doing well clinically could be placed on treatment.
The Home is now receiving free antiretroviral drugs for all of the children on meds from the Global fund (Aid from the USA government for HIV infected persons in the Caribbean). This will allow us to start treating the other children as well as sustaining the treatment for those who are already on the medication.
Our children have access to free clinical care at the pediatrics HIV/AIDS clinics set up in the local Hospitals. Pediatrics HIV/AIDS specialists, who have taken a keen interest in the medical care of the children, monitor the children. As a result, the children's medical conditions have improved significantly.
Removing some of the stigma of HIV/AIDS & building greater sensitivity.
The stigmatization of individuals infected with HIV or AIDS remains a central issue. However, the children at Dare to Care are helping to break down any barriers or walls created against them by society by showing the community that they are loving, caring, relatively healthy and normal children who love to laugh and play.
Many people have the perception that HIV positive children are 'malnourished-looking' children with lots of sores covering their bodies. This perception is quickly erased when people meet the healthy-looking, bright, loving children at Dare to Care. The home has frequent and repeat visits from individuals from different groups, many of whom are now requesting to take the children out as well as having them spend time with their families in their private homes.
July 2005