A recent gathering of persons living with HIV shared their “deepest emotional pain” over stigma and called for recognition of their diversity and the establishment by the government of a desk at which they can lodge complaints.
At a briefing on the forum, Chief Executive Officer of the Caribbean Family Planning Affiliation Ltd (CEPA), Dr Tirbani Jagdeo pointed out that anti-retrovirals (ARVs) had ironically fuelled stigma and discrimination.
He pointed out that before ARVs the fatality ratio of persons living with the virus was seven out of ten but now with the treatment there are larger numbers of persons in different countries living with HIV and AIDS and this has seen stigma and discrimination on the increase.
He pointed out that the two are “essential drivers” of the epidemic because the more people feel stigmatized by uninfected persons, the more likely they are not going to get themselves tested and would deny that they are infected.
Speaking following the three-day workshop on stigma and discrimination for persons living with the virus, Dr Jagdeo said if HIV and AIDS are to be addressed properly in the Caribbean more effort must be placed on stigma and discrimination.
To this end, Dr Jagdeo said he has committed funds to this issue from money given to his organisation by the Canadian International Deve-lopment Agency (CIDA) to the workshop, which was held at Regency Hotel between August 26 and 28 and saw 25 persons living with the virus participating.
He said during the workshop, held under the theme ‘Stigma and Discrimination: drivers of the HIV epidemic’, the participants shared their “deepest emotional pain with us” and advised on what should be done in the future.
Infected persons
At the end of the workshop a statement was formulated and this was shared with the media during the interaction with Dr Jagdeo at the Guyana Responsible Parenthood Association (GRPA).
And one of the burning hopes of the participants was for strategies to reach out to their population and “explicitly recognize that we are an internally diverse population with respect to age, gender, socio-economic status, sexual orientation, life styles and the degree of high risk behaviour that exposed us to the virus.”
They also want programmes and policies to be sensitive to their internal diversity since it is critical to their relevance and effectiveness in reducing the spread of the virus.
Further, in the statement the infected persons pointed out that they are more than people infected with HIV and their infection does not define them.
“We are men and women with the capacity to contribute productivity to all aspects of society and are entitled to the respect and rights granted to all productive members of society,” they said. And such rights include the right to work, access to education, training and health care, freedom from insults, physical abuse and any form of discrimination issuing from their HIV status.
They also urged that all initiatives should take into “explicit account the rights of women based on the principles of gender equity and equality.”
Meanwhile, the participants called on the government to provide leadership through “legislation and policies in addressing the continuing discrimination against [infected persons] in the workplace, to strengthen the ability of all persons within the health care sector and to provide respectful, confidential and private services to [them] and ensure free and full access to education, training, housing, other social services and insurance for [themselves and their children].”
Seeking redress
They also want the government to set up a desk charged with special responsibilities for investigating reported violations of the laws and policies and with the authority to seek redress for any proven violations of their rights.
And members of civil society were asked to raise their voices in public support for the call for policies and legislation to end stigma and discrimination against infected persons. They were also asked to join with the people living with the virus in the network of associations to act as a watchdog for the protection of the rights of those persons at all levels of society.
Non-Governmental Organisations (NGOs) were asked to collaborate with the National AIDS Programme Secretariat (NAPS) on the production of a directory of services covering essential social services, inclusive of educational, health, counselling and gender-based violence.
The participants recognised that they have special roles to play in the fight against stigma and discrimination and to this end they called on the organizations of people living with the virus to develop material for conducting training aimed at preparing infected persons for the challenges of dealing with the public and working with individual groups.
They also want them to facilitate training sessions for healthcare professionals in the refinement and use of pre-and-post-counselling protocols for people living with the virus with special attention to aspects of privacy, confidentiality and respect that are important to the infected persons.
Further, those organisations are asked to counsel and assist persons in testing centres who are desirous of getting HIV tests and giving advice on sensitive matters such as
disclosure, the need for care and support and the value of seeking treatment.
And they should also develop material for conducting training aimed at preparing infected persons to serve as mentors within their community.
Outreach work must also be conducted in the communities based on documented personal testimonials to the value of care, treatment and support and to discuss the complex issues having to do with HIV prevention, testing, disclosure and safe sex.
And finally, the organisations are asked to train the infected persons in educating families, young people in and out of school and the community in matters related to HIV transmission, prevention, testing and disclosure.
Dr Jagdeo said that the statement would be circulated to the Ministry of Health, regional, faith-based and international organizations, among others.
“We think that this statement that they have given us gives us guidance about where to go in the future.”
Dynamics of infection
Dr Jagdeo said further that the HIV/AIDS epidemic has been a “rapidly” changing one and it has been a “dynamic” epidemic with “regards to who gets infected with the virus and the manner of transmission.” He recalled that in the early days the virus was viewed as one for homosexuals but it very rapidly transformed into a heterosexual disease affecting men who have sex with women.
“The ratio in the middle eighties of the number of men who were infected compared to women was about three to one. That was not to last – about ten to twelve years after that ratio has been established the ratio began to change where more and more women became infected. So today in most Caribbean countries the ratio between male and female infections is about one to one,” Dr Jagdeo stated. He observed too that women are now even with men on the infection scale because many of them became infected through unfaithful male partners.
Continuing to illustrate the dynamics of the infection, Dr Jagdeo stated that at one time it was believed that the older men and women got infected but today in the Caribbean “the group of people who are being infected faster are young men and women and mostly young women.
So the dynamics has changed quite a bit. . .“ And the dynamics, he added, does not only apply to who gets infected but also the manner of transmission since in some parts of the world people get infected mostly from drug use while in other cases it is sexual.
