Stigma and discrimination continue to be the biggest hindrances to people living with HIV adhering to their medication regime, which affects the country’s ability to achieve UNAIDS 2020 “90-90-90” goals, according to Executive Director of the National Coordinating Coalition Inc (NCC) Simone Sills. The 90-90-90 goals set by UNAIDS aim to see 90% of people living with HIV aware of their HIV status, 90% of diagnosed people on antiretroviral treatment, and 90% of those on treatment virally suppressed.
“Discrimination remains the biggest challenge when it comes to adherence because you need that support, you need that encouragement and if you are hiding to take your medication it puts you in position where you are more likely to forget because you can’t develop a routine which is vital to adhering,” Sills told Stabroek Weekend in a recent interview.
She underscored the importance of family support and encouragement which is absent when people are unable to disclose their status for fear of discrimination. Sills said she hopes more people will be able to see that HIV is just like any other chronic disease.
“We are hoping that the stigma that is associated with HIV will wean further just because of the experience of COVID-19,” she said, while observing that the latter has shown there is an illness that can be more fatal than HIV.
People, she said, continue to hide their status because of fear of being stigmatised and the less people speak about what is happening, it becomes even more likely that someone else will become affected.
“And so education is the key. With education comes empowerment and with empowerment you have the ability to make better choices. Knowledge is what gives you that education and if people being fearful because of discrimination [decide not] to share that knowledge then we are all are the poorer for it,” she stressed.
She also said that at times stock-out of medication affects the adherence even though it is not the biggest hindrance. Another issue that contributes to non-adherence is that when people start to feel better they tend to skip their medication, which is the overall cultural behaviour of people when they are ill.
“The challenge is that you have to take your medication for the rest of your life, even on days when you are feeling well,” she noted.
This, Sills said, underscored the importance of having someone in your corner and the importance of disclosure because if family members know then they can assist in HIV-positive persons taking their medication on time.
But she stressed that discrimination will always be on the list of why people are struggling mentally, physically and in all ways because they are not going to let others know what is happening to them if they are going to be stigmatized.
In recognising World AIDS Day, observed on December 1, Health Minister Dr Frank Anthony said the country had made strides in achieving the first of the 90-90-90 goals. He said that towards the end of 2019, Guyana recorded 8,700 people living with HIV with 73% of them on antiretroviral therapy and 75% virally suppressed.
UNAIDS, in a statement, said that some Caribbean countries have achieved elements of the 90–90–90 targets. Barbados has reached the target for testing while Guyana has exceeded it with 94% of people living with HIV diagnosed. Haiti has gotten 98% of diagnosed people on treatment. Suriname and Trinidad and Tobago have achieved viral suppression among at least 90% of people living with HIV who are on treatment.
Coronavirus
But with the coronavirus life has become more difficult for people living with HIV.
“The issue of not wanting to put yourself at greater risk, to take the chance to get your medication when it is finished. Some would say better I stay home and therefore the support for people living with HIV in the crisis of coronavirus it has really created a bigger challenge for us,” Sills said.
She stressed that the communities that suffer the most economically and otherwise when such crises occur are those that are already vulnerable and therefore if very stringent measures are not put in place to assist them, they will suffer.
Sills pointed out that some of the psychological support HIV-positive people received through some of the health centres has been “ripped away with the need now for social distancing”. They also cannot meet with their support group and as it relates to the new way of doing business, which is virtually, Sills said there is need for internet connection which many who are already financially strapped do not have.
“And while there is the virtual platform it is not the same as being in person. It takes away certain elements of interaction and that is really [affecting] those that need that, particularly persons who have not disclosed their status to their relatives and so it is just tough for those that need it most,” she added.
Sills believes the saying ‘being your brother’s keeper’ is more important now than ever and as a result she continues try to meet with her group but revealed that a recent meeting had to be cancelled because people are fearful of COVID-19. She urged people to be kind and look out for others because they can be the straw that breaks the proverbial camel’s back or the bridge that helps a person to get back on life’s pathway.
“The coronavirus has been a big one for people living with HIV and AIDS… Once it hit at the beginning of the year, it was a big one,” she added.
It has created another barrier with adherence to medication as persons are not having enough to eat and as such are unable to take their medication.
“If you don’t have food you wouldn’t take it and if you don’t have money to buy food you are not going to take the medication,” Sills said, before observing the assistance provided through the National AIDS Programme Secretariat is not enough.
She explained that when a hamper is given, that individual cannot be instructed to not share it with others in the home when the lack of food is an issue. Even though it is envisaged that the hamper would last one person for a particular period to ensure that they take their medication, in most cases, they have to share it with others in their households.
Survival
Sills said as well that there is no continuous support and therefore survival becomes a real issue and those who are not working may very well turn to “survival sex”. While they may ensure a condom is used, they are also exposing themselves to COVID-19 which comes with its own challenges.
“HIV with the onset of coronavirus has brought us to a place where you didn’t think of before… even as we thought we were dealing with all the regular challenges per se, this challenge has taught me so much more when it comes to HIV and another pandemic that [affects] the survival of those persons,” Sills stated.
Depending on where people are with their day-to-day stability, Sills said, determines what their actions will be and some will put themselves in circumstances that exacerbate what they are already facing, and they will feel as if they are in a whirlpool of struggle.
“It is not to be taken lightly and so those of us who are running around the streets mask-less and grouping up should think of the consequences and that there are people that your behvaviour literally determines their survival,” she warned. She called on people not be selfish and to be aware that contracting the coronavirus can be fatal for those who already have a compromised immune system.
But something good can come from every bad patch, and with the coronavirus Sills believes if it could be messaged in such a way to bring a turnaround as to how people interact with people living with HIV then there will be some good.
‘Done well’
Meanwhile, Sills said Guyana has done well in the overall response to HIV.
“We have done a tremendous job in encouraging and getting people on treatment. We have done a good job in terms of trying to make people adhere. The health centres having had case navigators and case managers… a person living with HIV who is responsible to have on the spot contact and encouragement and keeping any other person who comes to that centre and is HIV positive within sight,” she said.
She urged that authorities, who are responsible for ensuring medication is there and follow-up services, have to ensure that those services continue to go on unhindered. She said they should also ensure that the policies and procedures that have implications to impact continue to be of highest priority and the gains made should not be lost, she added.
“But as a country I think we can be proud. I know you don’t want to be proud of even having one of your citizens affected but we are where we are and have been one of the leading countries in the Caribbean as it relates to the response,” Sills said.
The NCC is a registered NGO that is the coordinating body for some 38 other NGOs with optional membership. The 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.
The NCC’s 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 the 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.
