The problem of stigma and discrimination against people living with HIV/AIDS (PLWHA) continues to be a major challenge, and is most prevalent within families, according to the preliminary results of a ground-breaking survey which was unveiled yesterday by representatives of the National AIDS Committee (NAC).
Funded by a grant from PANCAP, NAC facilitated the survey, which was recently conducted over a three-week period across nine regions targeting primarily PLWHAs in a bid to assess the impact of stigma and discrimination on those infected.
By interviewing 300 PLWHAs the survey revealed levels of discrimination, defined as ‘unfair treatment’ with regards to accessing drugs (ARVs), care and support, and at the workplace; but the survey highlighted that there is substantial stigma and discrimination, or “non-acceptance” of the PLWHAs, in families, religious organisations, and even, in some isolated cases, by medical personnel.
At least 48 per cent of the respondents revealed that they were discriminated against by family members.
It was revealed that the respondents comprised 60 per cent females and 40 per cent males, with almost two-thirds being residents of Region Four.
Interesting, too, was the fact that almost all of them had been HIV positive for between one and five years, and a further 21 per cent between six and 10 years.
It was observed, too, that the infection rate was most prevalent among the 30 -39 age group—42 per cent, and was the lowest among the 14-18 age group – three per cent. This is the same rate of prevalence as in the over-60 age range.
According to representatives of NAC, respondents were asked to rate a number of situations as improving, deteriorating, or remaining the same. They were comfortable to relate accurate information since the nine interviewers were also PLWHAs.
In selecting the target audience, efforts were made to tap into the realm of PLWHAs with a view of dividing them into small circles of inaccessibility.
The first accessible circle, according to the representatives, comprised the economically and socially well-placed, whose identity as PLWHA is not publicly known to anyone, since they have not availed themselves to local medical services or acquired care and support from public sources.
Then there were those who valued non-disclosure to the point of foregoing access to treatment, care and support; and those who drift in and out of surveillance of support groups for one reason or another.
Based on the facts of the survey, it was also ascertained that the fears generated by attitudes that stigmatise PLWHAs, particularly in the family and religious circles, are of greater concern that overt acts of discrimination.
“Judgemental attitudes, generating shame and embarrassment add up to powerful influences to deter people in Guyana from disclosing their HIV identity. In turn, failure to disclose generates many negative personal, societal, medical and economic consequences,” it was disclosed.
It was deduced that once conditions are hostile to disclosures in the family, the likelihood of PLWHAs opening up to others is remote.
Additionally, it was noted that since homosexuals and female sex workers are already stigmatised, there is less incentive for them to disclose their status.
But, according to the NAC representatives, it is only through the willingness of persons to get tested that a reliable source of information can be derived for programming activities in the fight against HIV.
“Without accurate figures it is impossible to estimate the scope of the problem, numbers who need treatment, design of prevention and treatment programmes, and projections for future directions.”
It was further noted that the current inability to provide projections confidently in Guyana and the larger Caribbean is therefore intimately linked to the failure to address stigma at the levels of law, ethics, human rights and religious values.
“Without reforms in these areas, to undermine inappropriate values and attitudes, scientific approaches to medical and preventative strategies are severely limited,” they noted.
And until the Government takes steps to implement the series of legal reforms to ensure confidentiality, outlaw discrimination, and challenge stigmatic attitudes, the fight against HIV in Guyana will remain an unfocused collection of activities rather than systematic, science-based programmes of predictable effectiveness.
For this reason, the representatives said, it is expected that the revelations of the survey will engage the attention of the Ministry of Health, the National AIDS Programme Secretariat, non-governmental organisations and other concerned agencies that are tasked with planning programmes to combat the virus.
At a simple forum at the Methodist Outreach Centre at High and Leopold Streets, several representatives from various organisations with an HIV/AIDS interest gathered and were able to question various aspects of the information presented.
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