By Wendella Davidson

DESIREE Edghill, MS, the Executive Director of Artistes in Direct Support (AIDS), who through the non-profit, community-based organization has blazed the trail in raising awareness about the Human Immunodeficiency Virus (HIV) and the Acquired Immunodeficiency syndrome (AIDS) and sexually transmitted infection education, is now contemplating addressing issues in relation to cancer.

According to this phenomenal woman, a cancer survivor, she wants the focus to be more on prevention, as such she is contemplating using the `tried and proven’ model the organisation had used during their successful HIV/AIDS programme, for a cancer prevention project.

Speaking recently of her plans during an exclusive interview with the Guyana Chronicle, Edghill said, “I want to do a prevention programme; the organisation did a great one on prevention for HIV, and I think we could use that same model to do a prevention programme for cancer.

“I don’t want to do something to give support to someone who has cancer; there are already a lot of people doing that. I want to do a programme to tell women do not get cancer; prevent yourself, just as how we did with HIV,” she added.
However, she explained that now that the programme through which the organisation is funded is almost at an end, she will have to find new avenues through which she can tap into funding.

The Artiste in Direct Support Organisation has, during the execution of its successful HIV/AIDS and sexually transmitted infection education, received funding from the World Bank, Global Fund and USAID.

But Edghill said that the World Bank funding is no longer available in Guyana, while that of the Global Fund is scheduled to finish in two to three years. Funding from USAID, which has been supporting the organisation since 1999, she said, will come to an end in July. USAID currently provides funding for only two civil society organisations, Artiste in Direct Support being one.

On this note, Edghill disclosed that the results of a survey in relation to HIV/AIDS among youths here is quite worrisome for her, as it has been found that a lot of the new infections to date are among persons 15 to 49 years old.
“We have come full circle,” she said. “We are right back where we started, as our youth are our most at-risk population.”

With her organisation being cognisant that youths are not reading the newspapers, Edghill said that television advertisements specially targeting young people have been created in an effort to capture their attention and sensitise them about the dreadful HIV/AIDS scourge.
Additionally, over the years, the organisation has shifted its focus to the workplace, the

community, and the key affected populations, given that the most affected populations are the at-risk population which include men who have sex with men, commercial sex workers, loggers and miners, and the adjacent population to a lesser extent.

Edghill lamented, however, that youths should have been among the lot, because every day, a young person is experiencing their first sexual encounter, so we should never have stopped addressing our youth.

She also regretted the focus now having to return to the youths, when the funding is leaving Guyana, adding that there had been repeated calls for attention to be placed on sustainability.
The organisation does work with faith-based communities and in-school and out-of-school youth.

FOUR-MONTH PILOT
It was explained that last year, the government started a pilot project that saw civil society funding to conduct work in the field of HIV. The four-month project targeted the key affected population, this being men who have sex with men and commercial sex workers, but not the country’s youth, who are still at risk, Edghill contended.
Edghill disclosed that the organisation has just concluded a consultancy with the United Nations for a National Strategic Plan (NSP) that will span from 2020 to 2025. She said that in addition to the inclusion of youth in the blueprint, a budget and a module evaluation plan have also been created. The latter will allow for checks and balances to be conducted.

Meanwhile, an ongoing NPS that began in 2013, which was slated to last for seven years, will conclude later this year.

Artistes In Direct Support is the brainchild of the late Keith Andre Sobryan, who had put together a team comprising Margaret Lawrence, Robert Narain, Paloma Mohamed, Don Profitt and Desiree Edghill.

Subryan was, in 1989, diagnosed as suffering from the dreaded HIV Disease, and according to Edghill, it was he who suggested that the organisation should be so named. The aim, she said, was to immediately seek to address stigma and discrimination, since at the time persons never wanted to hear or be seen anywhere where HIV testing was being done.
“Subryan, even in the face of brutal stigma and discrimination, wanted the public to know of the presence of the disease, and the need to take precautions against it. For him using the Arts as an avenue was his way of sensitising the public, “Edghill said.

She admitted to being timid at first, because of the then stigma attached to HIV/AIDS, and recalled being referred to as ‘The AIDS Lady’, something she did not take kindly to, and which has caused her to only attend funerals when absolutely necessary.

CARICOM CHAMPION FOR CHANGE
Edghill said that over the years, both she and her organisation have faced stigma and discrimination because of their fight to stamp out the stigma. Her work and determination was nevertheless recognised, and in 1992 she was rewarded for her grit and determination when she was bestowed with the CARICOM Champion for Change Award. In 2013 she was the recipient of a Longstanding Service Award from the Ministry of Health for giving 25 years of yeoman service and in 2018, she was conferred with one of Guyana’s National Award `Medal of Service’.

In February 2020, Edghill was the recipient of the Commonwealth Points of Light award for her work to raise awareness and educate persons about HIV/AIDS.
The award, which is given by Queen Elizabeth II, was presented on her behalf to Edghill by British High Commissioner Greg Quinn, at a ceremony at his residence. It is given to individuals in Commonwealth countries who are recognised for their sterling work support individuals and groups in society.

Edghill is Guyana’s second Commonwealth Points of Light awardee, the first being Denise Dias of the `Women in Black’ organisation. She is overall the 124th awardee for the Commonwealth.

“I’ve done a lot of work over the years, not for awards. It’s in my genes, and my genes are very tight,” Edghill said, adding: “I wrote my first play in 2000 when Keith Andre Sobryan died.” She recalled that he used to write all of the organisation’s plays, from 1992 when it was first established. And when he was dying, she said, he asked that they continue the organisation.

Edghill said her organisation has, since its creation, undertaken lots of work, including creating posters for the service industry, through the ILO and in collaboration with the Ministry of Labour. She has also personally trained Occupational Safety and Health (OS&H) officers to function as HIV personnel, who in addition to conducting inspections at work places in relation to OS&H systems can check for the presence of HIV policies and programmes. And, where none exists at any organization, they trained officers can assist the errant organisations in formulating and implementing such systems.

THROUGH THE YEARS
Reflecting on the organisation’s climb to its current status, Edghill said they initially used to finance shows from their own pockets, and were supported with meals and accommodation by people within the out-of-town communities where they performed. To answer questions raised by persons in communities, as it relates to HIV, Edghill said they would have personnel from the Genitourinary (GUM) Clinic, now the National Care and Treatment Centre.

In 1999, the organisation was among six non-governmental organisations (NGOs) that were identified by USAID to undertake a Guyana HIV/AIDS /STI Youth project.
But while the organisation was known for its work, it was not registered, as such the first work contract was the through the Guyana Responsible Parenthood Association (GRPA). Edghill said she and Subryan, who had previously undergone some training in Suriname, were given the job to formulate the materials for the project. That entailed putting together a theme with a jingle `Ready Body is it really Ready’. The launch of the project was Subryan last public event that he attended.

Edghill recalled Subryan ‘s request as a bid his time, was for the organisation to be sustained even after his demise in 2000. She honoured her friend’s request by having the organisation registered in September 2001, after doing a play, and taking all of the proceeds for that purpose.

And, not only was an office opened in 2001, but the first set of peer educators, numbering 12, were also trained in 2001 and presented with Certificates.
The organisation began doing structured work, and designed its own programmes, conducted workshops that enabled them to discuss and formulate programmes that were applicable to the respective regions.

Edghill noted that of about 20 NGOs that were functioning then, Artistes in Direct Support is the only one that is left that was receiving funding from the USAID in 1999. In addition to funding from USAID under the Guyana HIV/AIDS/STI project, they also benefitted under the Guyana HIV/AIDS Prevention Programme 1 & 2 and under the Advancing Partners and Communities (APC) so we came full circle.

She said the organisation received lots of support from educator Bonita Harris, who was very instrumental in training the members as educators, and to train the trainers who in turn would tutor the young people.

Edghill said it was Harris who created the Bodywork Manuals1-3, the Faith Matters 1-3, that allowed them to engage with the Faith-Based Community and men who have sex with men. “The manuals she created were so effective that, over the years, we have been sharing them with our partners in the Caribbean,” Edghill said, adding:
“Through our work and that of others, Guyana has been considered among the pioneers in addressing, HIV/AIDS. Our country has been among the first that started to address HIV/AIDS, as other counties, especially those that thrive on tourism, did not want to be associated as having HIV in their countries. The authorities there felt that such a stigma would have deterred persons from visiting their countries.”

Edghill pointed out, too, at that time Guyana, was the only country on this side of the hemisphere that qualified for three major funding – the World Bank, the USAID through PEPFAR and the Global Funding. As a result of all of that funding, Edghill said they were able to do tremendous work.

“One of the things we were able to do,” she said, “was keep the HIV virus here to under two strains, HIV 1 & 2, for years. And, to date, it has not changed.
“Now,” she said, “we are in control of our virus; we have attained our first 90 of the UN 1990 goals; are three per cent towards our second; and are 75 per cent completed on the third.”