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Jackie's journey HIV/AIDS related stigma still a major problem

By Oluatoyin Alleyne

Thursday, May 18th 2006 - As high-level discussions take place in preparation for the UN General Assembly's Special Session on HIV/AIDS (UNGASS) May 31-June 2, 2006 in New York, many persons living with HIV/AIDS in Guyana are still saddled with the double challenge of coping with stigma and discrimination and their illness.

Guyana still has a major problem dealing adequately with HIV/AIDS-related stigma and discrimination, despite its relatively good track record in other areas. It is a situation, which must be addressed as an integral part of Guyana's national response to the HIV/AIDS epidemic, as it has the potential to reverse all the gains made so far in the struggle against the epidemic.

Because stigma and discrimination persists, PLWHAs on a daily basis are denied basic rights that everyone, regardless of their circumstance is entitled to.

Two years ago, Jackie* tested positive for HIV (Human Immunodeficiency Virus). In need of immediate support, she went to her older sister. She says it was one of the biggest mistakes she has ever made.

After initially empathising with her and shedding some tears, Jackie's sister informed other family members and neighbours about her HIV status. Since then, she has been facing all forms of verbal abuse from her relatives and friends. No one wants to be close to her.

"I would advise anyone who know they have AIDS not to tell anyone, not even their family. Just keep it to themselves," Jackie said.

A mother of four, Jackie explained that her husband, to whom she is still married, infected her.

"And my sister even cause him to lose he job because she went to the workplace and tell everyone he had AIDS… he become shame and leave he good job. Now both of we have to work as security guards," she said.

The sister, who is also a security guard at the same firm where Jackie works, has also told most of their colleagues that Jackie is HIV+.

"But what I could do? I have to continue to work. Sometimes I does feel shame but I have to work to support my children. Sometimes I can't believe that my own sister would do something like that to me."

Jackie's story is not unique among the estimated 15,024 people living with HIV and AIDS (PLWHA) in Guyana. An estimated 2.5% of the adult population in Guyana is infected. Persons known to be infected continually face serious discrimination, which has resulted in almost all of them keeping their status secret.

So serious are the acts of discrimination against PLWHAs that Government and civil society organisations have pinpointed stigma and discrimination as the greatest threats to the achievement of the commitments made at the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) in 2001.

Minister of Health Dr Leslie Ramsammy said among the things Guyana will report on at the United Nations General Assembly Special Session on HIV/AIDS (UNGASS), when it convenes on May 31, is that stigma and discrimination were still serious problems.

A representative from the Guyanese Association of Persons Living with HIV/AIDS (G+) who will attend the UNGASS also plans to speak out on stigma and discrimination.

Another G+ representative spoke of the many clients who are alienated from their families because of their HIV status. In many instances, the woman explained, family members force PLWHAS to use separate kitchen utensils and different bathrooms and toilets. When they fall ill, family members tend to abandon them at the hospital.

The woman herself is not immune to such treatment and said family members point her out on the streets and make snide remarks. "HIV victim, you still living," or "Dead and alive you looking good the medication working," are just some of the remarks the woman said she has to endure whenever she encounters one of her in-laws on the street. She was forced out of a job because her in-laws told her colleagues. However, she has a supportive family who has been with her since her husband committed suicide following her positive results.

Dr Ramsammy said the Ministry has included stigma and discrimination as a "priority pillar" in the National Strategic Plan on HIV/AIDS for the years 2006-2010, which is set to be released shortly.

Various strategic interventions have already been undertaken to reduce stigma and discrimination in Guyana. Dr. Ramsammy explained that one of the interventions was a move to pass legislation following the completion of consultations with major stakeholders. The minister has recruited a legal draftsman with a human rights background who is familiar with Guyana's laws to assist in drafting the legislation. The minister said this should be completed in the next two months and the Bill is expected to go to Parliament after general elections.

While Guyana has laws prohibiting discrimination in areas including employment and the provision of goods and services, none mention HIV or AIDS as prohibited grounds of discrimination, though protection is generally extended on the ground of disability. Recognising this, the National AIDS Committee (NAC), a body which advises the Ministry of Health on HIV/AIDS and related issues, has recommended among other things that the laws should be expanded to include HIV status and suspected HIV status, either by making it a separate ground or by specifically including it in the definition of disability.

Dr Ramsammy said this and other NAC recommendations would be included in the drafting of the legislation. Importantly, the NAC recommended that public health or general anti-discrimination legislation should be specifically amended to prohibit pre-employment HIV screening.

This is the route by which Jackie discovered her HIV status.

A prospective employer had insisted that Jackie needed "a complete medical" before being hired. However, she can't say for certain whether being HIV+ would have affected the outcome of the interview as she chose not return to the company after she received the result.

Executive Director of Lifeline Counselling Services, Carlotta Williams, agrees that while there has been tremendous progress towards stamping out stigma and discrimination, there is still much to be done.

"Because of the way in which HIV is viewed I think it would take eons… There has been some amount of progress made. Some of our clients are really more accepted in certain places, yet there is more to be done with families and care workers," Williams explained.

She cited the media campaigns, particularly on television, sensitising the population about stigma and discrimination. However, she believes more needs to be done at the personal and community levels.

"I think [campaigns] should be more community oriented… People tend to respond better to individual or small-group contact, rather than to messages broadly splashed on the television or written in the newspaper," she said.

Or could the impact of the messages have been dulled as a result of overkill? Dr Ramsammy, while not referring directly to the stigma and discrimination messages in the media, said all the parties could have come together early and developed one set of messages.

"That's fine, they don't have to be developed by one person, but what I am talking about is how much money we spend on doing some of these things, and if we are going to be doing the same things… it is an example of the overlapping," he recently said.

The reality is that PLWHAs encounter stigma and discrimination while accessing treatment although this is less than it was years ago. Williams confirmed this.

"Care workers, in their interaction with PLWHA, could be more humane and more understanding of what (HIV) positive persons endure," she said.

Ramsammy also said the ministry recognised that the behaviour of some health workers was undesirable. He described it as a major problem, adding that it is expected the attitude of health workers would be different from that of the general population. As a result, continuous work to sensitise health workers will be done.

So perhaps by the time Jackie needs anti-retroviral therapy she will not face discrimination by health workers. Her husband and her youngest child, who is three years old, are on anti-retroviral therapy which is being offered free by the Government of Guyana.

* Names changed to protect identity

The article above is part of a five-country series on the Caribbean's HIV/AIDS response since individual governments signed the United Nations General Assembly Special Session on HIV/AIDS Declaration of Commitment in 2001.

It is now five years since those promises were made and time to assess the progress made. This is a collaborative effort between Panos Caribbean and Stabroek News of Guyana.