Civil Society Organisations have crucial role in supporting HIV fight, says Activist

Apr 06, 2014 News

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The fight against one of the most chronic diseases, HIV, is certainly not one that Health Ministries across the world can engage alone. In fact, for many years the struggle has seen support from many a Civil Society Organisation (CSO).
Of course here in Guyana this trend is especially notable with the ever-increasing CSOs lending a hand to combat the scourge against HIV/AIDS.

According to Desiree Edghill, who has for a number of years stood in the forefront of a CSO, “we continue to be an integral part of the National HIV Programme.”  Her conviction was vocalised recently during a meeting held at the Regency Suites/Hotel, which was designed to solicit input from stakeholders to aid the completion of the Ministry of Health’s National AIDS Progress Report.
The Report was slated to be handed over to UNAIDS on March 31 last and indeed some positive strides have been made over the years towards helping to significantly reduce the prevalence of the disease with treatment and of course, awareness.
And so important has been the work of CSOs in the fight against HIV, Edghill noted, that even the Ministry of Health has recognised, supported and openly expressed appreciation for such work.

A WORRYING AFFLICTION
Remembering the initial local encounters with the disease, Edghill said that it was in 1987 that a male dancer was hospitalised with a sickness that puzzled medical practitioners. In fact she recalled visiting that sickened dancer in hospital and herself feeling scared at what she saw.
“It was so strange,” Edghill reflected.  At first it appeared as though the frightening scourge was claiming its victims from the dancing fraternity annually, since by the following year another male dancer, who was also a nurse, was subjected to its damning scourge.
However, by that time word had reached Guyana about Acquired Immunodeficiency Syndrome (AIDS) which was course was by then being referred to as “the killer disease AIDS” which was sexually transmitted.
“I remember that I was the one asked to talk to our friend, the nurse, because we were working together on the Mash celebrations and he had lesions on his skin…” Edghill recounted.
She remembered too that it was one week after Mash that this individual collapsed while at work and was diagnosed with a brain tumour. Two weeks later he was preparing to travel to Trinidad for an operation but was beaten into despair when the results of his blood test revealed that he had the dreaded AIDS. He died soon after.
According to Edghill, it was through her colleague’s affliction that she was able to see the evolution of a disease that literally drains the life out of its victim.
“I remember seeing him being tied to the bed in the ICU (Intensive Care Unit) and watching his hair change from kinky to straight…”
The local health sector was faced with its first cases of AIDS. And AIDS was long seen as a malady that preys almost entirely on the immune system, resulting directly from one becoming infected with the Human Immunodeficiency Virus (HIV).  It was found, even from the inception, that during the start of the infection, a person may experience a brief period of influenza-like illness often followed by a period of no noticeable symptoms.

Health officials had found too that as the illness progresses, it interferes increasingly with the immune system making the infected person much more likely to get infections, including opportunistic infections and tumours that do not usually affect people who have working immune systems.
Edghill recalled that “back in the day” there was hardly anyone who wanted to take on the responsibility of addressing the issue. Instead, persons were quite satisfied to keep such talk quiet and not let others know that the epidemic had reached these shores.
But change was definitely on the horizon.

HIV ACTIVISM IS BORN
Edghill disclosed that in 1989, Keith Andre Sobryan, who later became one of the most vocal HIV activists in Guyana, invited a number of his close friends to “wine and dine” with him. The attendees were eager for the occasion as they all knew quite well why they were being invited.
“After we were all fed and were on our third glass of wine, he announced that he had something to tell us; of course we knew what it was, he had gone into the US (United States) Embassy for an interview because he and his sister were going to join their mother in the US,” Edghill recalled.
However, the words that emanated from Sobryan’s mouth plunged the gathering into a devastating mode. He disclosed that he couldn’t be granted the visa because he was found to be HIV-positive.
“I remember it as if it was yesterday; I also remember his request, he said that ‘if you do not want to continue to be my friend I understand, but I would rather you leave than stay and be hypocrites’,” Edghill recounted.
She was the first to respond to Sobryan’s disclosure giving all assurances that “I promise to be your friend until the end.”
“Although it wasn’t easy and very scary at times, I was there until the end and I cared for him until he died on the 11th of September, 2000,” said an emotional Edghill.
His passing evoked in her a passion to do more. And it was exactly one year later that she, among others, was behind the opening of an office for Artistes In Direct Support (A.I.D.S), a Civil Society Organisation of volunteers whose area of work is HIV/AIDS education through the use of theatre.
A.I.D.S was however an idea that was spawned from Sobryan a few years earlier. It was 1992, Edghill recalled, that Sobryan had gathered a group of persons in the Arts – two actresses, a dancer, a director, a writer and a musician – who together formed the theatrical CSO.
“He felt that because we were popular people, and people were flocking to see us at the National Cultural Centre, that we were in the best position to do HIV education through the Arts,” Edghill reminisced.
Their first production, ‘One of our sons is missing’ by Trinidadian Godfrey Sealey, was staged on December 1, 1992. It was however surprisingly attended by a mere 50 persons and in fact resulted in the cast experiencing, for many years, stigma and discrimination.
“It was felt that we were all HIV-positive or else we would not have been involved in the HIV fight, especially after another male dancer had died,” Edghill said.

REMAINING FOCUSED
They were however unrelenting in their HIV education quest and so travelled around the administrative Regions staging productions and even having question and answer segments which were facilitated by representatives of the Ministry of Health’s Genito-Urinary Medicine (GUM) Clinic. The collaboration was particularly important since, according to Edghill, “we used to perform and didn’t have the knowledge, so we would invite members of the GUM Clinic to come and answer the questions, as people asked them after our productions”.
Today A.I.D.S is involved in an annual production ‘The Flame and the Ribbon’ which is supported by the Ministry of Health, the National AIDS Programme, UNAIDS and even members of the business community. In excess of 2000 persons are usually in attendance.
Edghill credited Sobryan with forming the network of Guyanese living with HIV/AIDS. His creative mind also saw the creation of another CSO, Persons In Same Sex Relationships (PISSRS) which has since been renamed GuyBo.
The groups were known to congregate at Sobryan’s East Street, Georgetown home where they would strategise on the way forward in terms of their HIV/AIDS awareness campaign.

NEEDFUL SUPPORT
But it was in 1999 that Guyana, by way of USAID, under the leadership of Ms Carol Becker, would see the ‘first of its kind’ HIV response, where a group of six civil society organisations, Artistes In Direct Support, Comforting Hearts, Guyana Responsible Parenthood Association, Life Line Counselling Services, the Regional AIDS Committee of Region 10 now Linden Care Foundation, and the Volunteer Youth Corps, were called together to execute the Guyana HIV/AIDS-STI Youth project.
The project was being undertaken under the theme ‘Ready body! Is it really ready?’ and targeted youth, minibus drivers and conductors and even ‘limers’.

It wasn’t long before the number of organisations embracing the project increased to 20. This project eventually evolved into the President’s Emergency Plan for AIDS Relief (PEPFAR) Project. The response was then undertaken under the Guyana’s HIV Reduction and Prevention Programme (GHARP) I and subsequently GHARP II.  It continues today under the project titled Advancing Partners and Communities.
CSOs, according to Edghill, are today able to play a more structured role in terms of the fight against HIV because of the support that has been forthcoming. She disclosed that September 15 will mark 15 years since CSOs started receiving money from the US for the HIV/AIDS response in Guyana.

CAPACITY BUILDING
This strategic support, she noted, was even instrumental in helping to teach the CSOs capacity building in the areas of governance, programme management, financial management and sustainability.
According to Edghill the organisations were able to learn the importance of cost-sharing, whereby they could contribute themselves to the funding of the projects in which they engaged.
“At the time when I heard we had to share the cost I think I made the loudest noise…we were all a little perturbed but later on we saw it as a way of sustainability, because if you could start by a little bit to fund your project, eventually you can fund all of it,” Edghill said.
And so some important lessons were learnt, so much so, that the NGOs were, and continued to be, recognised and awarded for the valuable work undertaken in the HIV fight.
“We are getting there; we are not there as yet but we still are little perturbed about cost sharing,” Edghill mused.
She disclosed that over the years CSOs working in HIV have collaborated with the Health Ministry and NAPS to continue the fight against HIV/AIDS. This was particularly important, she noted, since it was made clear by former Minister of Health, Dr Leslie Ramsammy, “that regardless of who is doing what, funded by who, we have one national (AIDS) programme.”
She recounted how evident it was that Dr Ramsammy had a passion for HIV/AIDS work, even as she added that “there were few times that he and I didn’t see eye to eye and I personally opposed some of the things that he wanted done, fearful that they wouldn’t work and we would get lashes for them.”
Of course Dr Ramsammy had his way anyway. But it was because of this determination, Edghill confessed, that Guyana was one of the only countries in the Region to qualify for three major sources of funding for HIV all at once – PEPFAR, the World Bank and Global Fund.
“Through the World Bank Programme, lots of other CSOs came on board in the fight against HIV/AIDS; a lot of grassroots organisations…it was a very, very beautiful programme,” Edghill recalled.
She emphasised that the HIV fight’s momentum has certainly not dwindled. She pointed out that the HI-Vision 2020 Strategic Plan which has Minister of Health, Dr Bheri Ramsaran, at its helm, will guide the fight against HIV over the next few years. However, she cautioned that Minister Ramsaran certainly “has his work cut out for him” as multi-sectoral advances continue to reduce the impact of HIV/AIDS.

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