Rachel Allen (not her real name), who lives in Kingston, Jamaica, was coming to terms with testing positive for HIV and trying to get on with her life. When she decided to go to nursing school, she was horrified to discover that the school required her to take an HIV test as part of the application process.
Jane Williams and Paul Brown (not their real names) were in love and wanted to start a family. But when health-care workers learned that Ms Williams was living with HIV, they expressed their disapproval. One nurse told her she shouldn’t have a child because of her status. One doctor called her “wicked”.
These are experiences that are all too common among people living with HIV, according to Jumoke Patrick, Executive Director of the Jamaica Network of Seropositives. The organization was set up in 2005 as a mechanism for people living with HIV to report rights violations. Now, the Jamaican Anti-Discrimination System (JADS) provides a system for the formal reporting of incidents and as well as a system of redress.
It’s an essential service, says Mr Patrick. He says that providing a channel for people to identify stigma and discrimination is a first step to allowing people living with HIV to access services and live full and productive lives.
“The fact that people are not accessing services has to do with stigma and discrimination,” Mr Patrick said. “That is why we have a fall-off in access to services. Stigma and discrimination is the main reason we are not where we are supposed to be in terms of getting people onto treatment. I have to know that when I disclose my status, you will not use it against me.”
People who have experienced prejudice in the health-care, education and employment sectors can report it to a JADS Redress Officer. Clients are often referred through a community facilitator in their health region, other civil society organizations or the Ministry of Health’s client complaint mechanism. Complainants fill out a form and are interviewed by one of the four redress officers in their district. A panel reviews each case and makes recommendations regarding an investigation. Agency and confidentiality are key. Some people opt out of seeing their complaints through, but those willing to go the distance have the benefit of an advocate.
“If you want redress you have to make a complaint, and you don’t have to be alone,” said Nadine Lawrence, a JADS Redress Officer. “It makes a lot of difference when you become empowered. You are able to get back into society and live a positive life.”
The most common cases are about treatment in health-care settings, breach of confidentiality and workplace harassment. Ms Lawrence has supported clients whose work colleagues disclosed their HIV status to their bosses. Others have had health workers from their community disclose their status.
What would she say to someone who has suffered an injustice but is reluctant to make a report? “Our organization exists so people who are HIV-positive can be more empowered. We sign a code of confidentiality. Trust the system,” she said. “Because it works.”
It worked for Ms Allen. JADS redress officers contacted the Ministry of Health to challenge the practice of requiring an HIV test to enrol in nursing school. The Ministry’s Legal Department intervened, sending a letter to the school advising it that the policy was illegal. The school’s board ultimately removed the HIV test requirement from its intake form.
The system also worked for Ms Williams and Mr Brown, who received a written apology. In addition, their complaint initiated a training programme for medical staff about the sexual and reproductive health rights of people living with HIV.