Reporting HIV discrimination and seeking redress

Reporting HIV discrimination and seeking redress

Wednesday, November 27, 2019

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The following is the second in a four-part feature, written by the Joint United Nations Programme on HIV and AIDS (UNAIDS) Jamaica team, ahead of World AIDS Day — December 1 — exploring how civil society groups are working with partners in Government and the development community to address stigma and discrimination in keeping with this year's theme “Communities make the difference”. This year marks 36 years since the discovery of the Human Immunodeficiency Virus.

A Kingston native was coming to terms with her HIV status and getting on with life. She decided to apply to nursing school. However, she was horrified to find that the school required her to take an HIV test as a prerequisite for enrolment.

A couple, whose names are being withheld, was in love and wanted to have a family. But when health care workers learned that the woman was living with HIV, they expressed their disapproval. One nurse told her she shouldn't have a child because of her status. A doctor called her “wicked”.

There's no way of knowing how many times interactions like these have resulted in derailed dreams or refusal to access health care. According to Jamaica Network of Seropositives (JN+) Executive Director Jumoke Patrick, a mechanism for people living with HIV to report rights violations was first set up by the organisation in 2005. Now, the Jamaican Anti-Discrimination System (JADS) provides a set-up for both formal reporting and redress.

It's a critical service.

According to Patrick, offering an option to identify and address discrimination helps ensure that people living with HIV access services and go on to live the full lives the AIDS response assures they can.

Public opinion has not kept pace with scientific developments.

UNAIDS Jamaica Country Director Manoela Manova says it's critical that people get accurate, balanced messages about HIV. Today, it is possible for a person living with HIV to achieve an undetectable viral load, which means that they remain healthy and the chance of passing on the virus to someone else is almost zero.

“People need to know that HIV treatment and monitoring absolutely work,” Manova said. “But also that they must take precautions to protect themselves from other sexually transmitted infections by abstaining or practising safer sex.”

According to recent estimates, less than half of all people who have been diagnosed HIV positive in Jamaica are on treatment. Findings from a 2017 knowledge, Attitudes and behaviour study give a clue as to why. Sixty-seven per cent of respondents said they would not buy vegetables from a shopkeeper living with HIV. A new Stigma Index exercise is now under way in Jamaica, but in the 2012 study, 38 per cent of people living with HIV reported experiencing prejudice because of their HIV status.

“The fact that people are not accessing services has to do with stigma and discrimination,” Patrick said. “That is why we have a fall-off in access to services and viral suppression. Stigma and discrimination are the main reasons we are not where we are supposed to be. 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, employment, and other sectors make their reports to a JADS redress officer. Clients are often referred, through a community facilitator in their health region, other civil society organisations or the health and wellness ministry'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,” assured redress officer, Nadine Lawrence. “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. Nadine has supported clients whose work colleagues disclosed their HIV status to their bosses. Others have had health workers from their community spread the news.

What would she say to someone who has suffered an injustice but is reluctant to make a report?

“Our organisation exists so people who are HIV positive can be more empowered. We sign a code of confidentiality document whenever we meet as a steering committee. Trust the system because it works,” she said.

It worked for the woman who wanted to apply to nursing school.

JADS redress officers contacted the Ministry of Health and Wellness to query 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 that the policy is illegal. Ultimately, the school's board removed the HIV test requirement from its intake form.

The system also worked for the couple who wanted to get pregnant. They received a written apology and their complaint sparked training for health workers to reinforce, for nurses and doctors, the sexual and reproductive health rights of people living with HIV.

“Working with the Ministry of Health [and Wellness] is important. You can't have an HIV programme without people living with HIV being part of the dialogue. The ministry provides the space to have the conversations. Our partnership is really good,” Patrick said.

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