At 21, Michelle (not her real name) is HIV positive but she has kept her diagnosis a secret from her family. She needs to be on medication but is afraid to start as she does not want her relatives finding out her status.
She lives in a house filled with relatives but often she feels alone. She joined a support group and is being encouraged to take medication so her quality of life can improve.
“I talk to her, but she has no privacy at home so she afraid to take the medication because they might find out. Because of stigma and discrimination, she is not on treatment for over three years since she found out she was positive, country coordinator for International Community of Women with HIV (ICW) Marlyn Cameron told Stabroek Weekend in a recent interview.
Cameron, who heads the location affiliate of ICW, Guyana Community of Women and Girls Living with HIV (GCWAG) and who advocates for women and girls living with HIV, said her heart breaks every day when she witnesses how persons living with the virus are discriminated against.
“It makes me very sad because people just want to be loved and for their family to accept them,” she said.
Michelle is a reflection of many men and women living with HIV according to Executive Director of the National Coordinating Coalition Inc (NCC) Simone Sills, who said more needs to be done to address the issue of stigma and discrimination. She believes, “we took our feet off the brakes in terms of the intense awareness and education campaigns.”
She said while indeed Guyana’s fight against HIV has seen many successes, there is still much more to be done in the area of stigma and discrimination. Work at the school level is always important because new generations are coming up continuously. The figures have shown that the age group between 15 and 25 is where the new infections are concentrated and Sills said this is evidence of the importance of an intense awareness campaign remaining at the school level.
Today as Guyana joins the rest of the world to observe World AIDS Day both women want to reinforce the fact that more needs to be done when it comes to stigma and discrimination. This year, the theme for World AIDS Day is ‘Ending the HIV/AIDS Epidemic: Community by Community’. World AIDS Day was first observed in 1988.
Earlier this year, Deputy Chief Medical Officer Dr Karen Boyle revealed that the number of persons who were living with HIV in Guyana last year was 8,369 and of those 5,557, inclusive of children, were on treatment. Dr Boyle had said that the estimated HIV prevalence in 2017 was 1.7 per cent, which was 1.4 per cent up from 2014. She pointed out that the increase was not due to an increase in the rates of HIV infection but rather to persons infected with HIV living longer due to treatment with Highly Active Anti-Retroviral Therapy (HAART).
Still prevalent
Sills said that while the issue of stigma and discrimination is still very prevalent, it is not as “dreadful” as before. She pointed out that because there is still fear among family members it is stymying the progress of persons living with HIV to care for themselves and to get the support that they require.
“HIV medication is widely available in Guyana but because persons do not always have the family support, they are afraid to take the medication because no one in the house knows they are infected,” Sills said.
This is clearly the case of Michelle, who, according to Cameron, is getting progressively ill but refuses to take the medication that is free of cost.
Family care and support is really important, Sills stressed, while adding that HIV is like any other chronic disease and as she encouraged family, friends and neighbours to be supportive since without this the positive status person will face an uphill battle. Taking the medication is like a lifelong investment and Sills said there are many times when the patient would not feel ill and they will then get the urge not to take the medication and that is where the support comes in to ensure that they continue to take it. Having the virus undetected does not mean the patient is no longer infected but rather that the medication is working.
“What’s the use of having this medication and external care for persons, but they can’t get that same level of comfort at home?” Sills questioned.
She said the NCC has been speaking to the policy makers and emphasising the need for more to be done in this area as in the past when there was an intense response, because it was seen as one of the key factors in the progress to where the country is when it comes to the virus.
However, she pointed out, the intense education and prevention messages were donor driven, but now donor funding is dwindling. Guyana, she said, has been reclassified and there is a phase-out of donor funding for HIV intervention, which means all of it will have to be shouldered by the government.
“In essence, this [reduction in funding] has slowed that readily available resource for education and prevention education,” she said.
“Nobody needs to die from an HIV-related illness. A lot of deaths happen when people are not supported and are not being encouraged to take their medication and that is when they fall ill,” she stressed.
While there has been progress with persons now utilising non-governmental organisations (NGOs) for services, Sills said if stigma and discrimination is not effectively tackled then the gains made maybe reversed.
The NCC is a registered NGO that is the coordinating body for some 38 other NGOs with optional membership. NCC is an independent organisation and so are its members. It provides technical assistance to partners and non-partners and the partnership is centred on institutional strengthening, shared advocacy and resource mobilisation.
Its history goes back to 1999 and that partnership started with six NGOs working and collaborating in response to HIV. Since then the partnership has evolved to respond not just to HIV but to many other issues. The history of NCC as it relates to the response to HIV has come a long way but there is still lots of work to be done. The involved NGOs, according to Sills, through partnership with the Ministry of Public Health, are providing more than 50 % of HIV services.
‘Nothing for us without us’
Meanwhile, both Sills and Cameron stressed the importance of having persons living with the virus being involved in the fight, hence the tagline under which they operate is ‘Nothing for us without us’.
Cameron pointed that a person with HIV would prefer to open up to someone who would have walked the journey and who understands how they feel.
She said the GCWAG, which is undergoing a name change and will soon be known as Empire Plus Network, has some 95 members and the ages of the women and girls vary but the youngest member is 16 years old.
In observance of World AIDS Day, she said, counselling and testing are available at their Sophia location and they are also distributing condoms while information about treatment and care will also be available. Hampers will also be distributed.
The organisation is also in support of the civil society initiative, under the leadership of UN Secretary-General António Guterres. The UN Secretary-General’s UNiTE by 2030 to End Violence against Women campaign (UNiTE campaign) calls for global actions to increase awareness, galvanize advocacy efforts, and share knowledge and innovations. It falls under the 16 Days of Activism against Gender-Based Violence, an annual international campaign that kicked off on November 25th, the International Day for the Elimination of Violence against Women, and runs until December 10, Human Rights Day. The observance was started by activists at the inaugural Women’s Global Leadership Institute in 1991 and continues to be coordinated each year by the Center for Women’s Global Leadership.
Cameron noted that women and girls continue to be abused and she sees this among the many she interact with in her organisation. She wants persons to visit the GCWAG Facebook page and share the photographs and messages they are using to participate in the 16 days of activism campaign.
The GCWAG was formed in 2015 on World AIDS Day in collaboration with the National AIDS Programme Secretariat and UNAIDS. Over the years, Cameron said, the momentum has grown and more young women and even men and children who are living with and are affected by HIV and gender-based violence (GBV) have approached the organization for support and empowerment.
In an effort to expand the category of persons to benefit from its service, GCWAG has now taken the decision to call itself Empire Plus Network which will address the needs of men, women and children who are affected by or living with HIV and are victims of GBV. The new name will be registered, and it will then submit its completed work plan for next year in order to receive funding through ICW.
To wrap up the 16 days of activism the organisation will host a workshop on December 10th to address various issues affecting persons living with the HIV.
