HIV/AIDS support group flourishes despite lingering stigma
By Samantha Alleyne
September 9, 2003
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Just over ten years ago, persons living with HIV/AIDS (PLWHA) were often ostracised as they campaigned to be recognised as ordinary persons and to find others who were going through a similar experience.
Today some may feel that this isolation is still a problem, as there is still discrimination in relation to persons with the virus. But from all indications the world has made several steps towards remedying this problem.
On the local scene, it was in 1997 that G+, an organisation whose mission is to enable persons living with and affected by HIV/AIDS to empower themselves and sustain their quality of life through mutual support and collective action, was first born.
But even then, the organisation, which has at its core persons who are infected, was described as “underground” since the members were not keen on going public.
It has three founder members, one of whom has since died from the disease, and the other who remains the president of the Non- Governmental Organisation (NGO).
Despite great difficulties the organisation has been able to rent two floors of a building located at Lot 35 North Road, Lacytown.
Recently Stabroek News spoke to a member of the organisation, who has been at the forefront in the organisation’s fight against the disease.
The interview was done anonymously and this demonstrates how far Guyana still has to go in accepting persons living with the virus.
The member, while accepting this condition and living with it, still worries about the effect a public interview might have on their only child and also on family and friends, all of whom already know the situation.
Explaining the membership structure of the organisation, the member said that there were three categories: full members who are persons that are HIV positive; associate members, persons who are not positive but are affected in some way and want to get involved; and honorary members, various persons who can make a difference to the network.
“So you don’t have to be HIV positive [to be a member] but the support group is run by persons living with HIV and as such you have to be HIV positive to be a part of that group.”
The member describes the support group as the main anchor for the organisation.
“That [support group] started as the source of why we came together to support each other. So we started out as a support group just coming and sharing our experiences and now it has expanded in terms of the service we provide for persons infected and affected by HIV/AIDS.”
The member said there were about eighty full members.
“We don’t have too much active involvement by persons because of various reasons, because of people just not wanting to come out and be involved. They would register to be a member but sometimes you would not see them back until something occurs or they are not well.”
And because of the nature of the disease members do pass away. “We have had at least five members who passed on since the start of the year. I think a death affects the group in so many ways, given the fact that it is an organisation that is run by and for persons living with HIV/AIDS. When persons who come out and get involved ... get sick, it kind of pushes the network a little back in terms of contributions.”
The member said the top floor of the building is fully funded by USAID and on that floor supportive counselling is provided for persons who are infected and affected. If a person does not know their status and they want to find out, counselling is provided on that very floor. Hampers and supplements for infected persons are also provided along with educational information.
“They also provide training with peer educators, and these are persons who are infected as well as persons not infected. We provide ongoing training also for persons living with HIV... Also how to cope with society, family members and the workplace in terms of stigma and discrimination.”
The organisation has support groups in Regions 3, 4, 6 and 10. According to the member the major achievement for G+, “has been that we have expanded and a few of us have come forward to be in the forefront and to be heading the whole network of persons living with HIV/AIDS. And that hasn’t been happening in many other countries and certainly not back in 1997 in Guyana.”
Also the member pointed out that now the group has been given funds it has improved its leadership and structure.
In addition to funding from USAID, the `Ready Body’ youth project gets funding from the European Union (EU).
“I think we as a network have been able to see less in terms of sickness and death because persons are more aware on how to deal with the infection and how to live with HIV and not how to die of AIDS. I think that is as a result of our contribution in terms of capacity building and letting persons know what they are living with and how to deal with it and that it is not the doctors’ or nurses’ responsibility to do that.”
The member noted that looking at the situation of HIV/AIDS, “we will take small steps until we are able to make big steps in terms of our environment [where some persons are still in denial] in which we live in Guyana. There are people who can make contributions... they can work, you are at no risk of contracting the virus unless you place yourself in any compromising position...”
“Looking at 97 and looking now, we have really grown a far way and I am thinking 2005 we might really be public. More persons might want to come to the network and be involved and be in the forefront.”
The member said that it was important for PLWHAs to realise that they were part of the solution and not the problem. They urged all those persons to step out of the box of just being HIV positive, “because you still have your capacity, you still have different skills and you can still make a contribution.”
The member pointed out that infected persons were no different from anybody else, “it is just that we are living with an infection and we realise, yes that there are no cures. But based on research and a lot of what has been going on we have seen a lot of information coming out that can help you, there is treatment, there is management in terms of the virus...”
The member said that G+ encourages persons to continue with their studies but just to be conscious that they had an infection that needed to be monitored.
According to the member, a `touchy’ issue is the one where people continue in a sexual relationship even though they are infected.
“You find that persons, because of how they became infected, are a little reluctant to engage in relationships. We encourage them to be involved in relationships but to make sure that the person knows that you are living with HIV and these are some of the things you might need to put in place to protect yourself.”
The member said that while they have not had any weddings as such, they have had persons within the support group who are involved in relationships.
The member said they found out that they were infected in 1997, “and that is an experience I never like to discuss. It was really hard at first, but I can say I have grown through the process. I have moved away from wondering if it actually happened and if it is true. I know it is true as I have been tested more than once and I am being treated so I know that I am living with HIV.”
The member disclosed that they are engaged to be married to a person who is not infected and that person was dealing “with it quite comfortably, [they] are very educated and very informed. Most of my friends who know I am HIV positive they don’t have any problem they actually want to eat anything I have.”
The member welcomes the move by the government to make available anti-retroviral drugs for HIV+ persons.
“I think it is really needed. It has saved many persons’ lives and it has really been helping persons.” The member recalled a young woman who was almost on her deathbed and since she started the treatment she is looking even better than how she looked before the infection. The member cautioned that there was a whole lot of work in taking the medication and it was a long process. “The medication is important, the exercise is important, your mental health is important, your discipline in terms of drinking the medication on time is also important...”