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“Misguiding information circulated on Media forms fear of HIV among Public,” Talk with Sriyal Nilanka

Tampered by climate change and the global economy collapse, millions of people around the world prepared themselves for the better, only to face a new nightmare – the Covid-19 Pandemic. In the present, the contagion has taken away more than one million lives, infecting fifty million people worldwide.

It was only yesterday (09) Sri Lanka reported the thirty sixth death due to Covid-19, recording nearly fourteen thousand cases island wide. But these numbers had their surge in the occurrence of the second wave of Coronavirus incepted from a Garment Factory in Western Province. We recall that the first wave of Coronavirus instigated many forms of discrimination in the society, as well as this one, increasing judgement surrounding the disease and people’s vulnerability to resist it. When the death toll was rising and the Muslim community was denied to hold their burial rights as authorities pressured them to cremate the bodies of the deceased, and when the Garment employee known to have first contacted the virus in the second wave was subject to sexist and offensive profiling, a discussion about [multiple forms of] discrimination that has taken course has been brought up.

For people living with HIV, also known as PLHIV, the struggles may have been significant in the context of Covid-19, catering to difficulties of being able to access health-services for their medication, safe environments and discrimination-free social interaction. Nevertheless, stigma around HIV/AIDS is still a mess we have to clean off, as media continues to sensationalise the scenario by fuelling stigma and hatred surrounding HIV and the PLHIV community, propagating myths and misconceptions in view of rising their numbers up.

Shedding light on to this matter, LNW met Sriyal Nilanka, a PLHIV Activist who is working as the Program Officer SKPA at Family Planning Association of Sri Lanka (FPA), in the aim of collecting a broader point of view of how the PLHIV community is handling the situation. Nilanka is also working on a Global Fund-funded regional grant for HIV Prevention in Sri Lanka and is closely associated with the National HIV Response undertaken by the government of Sri Lanka. In this discussion, we will be focusing on the lives of people who are living with HIV in Sri Lanka in the context of Covid-19, as Sri Lanka has met with a strong second wave, against which a number of marginalised communities of various degrees are struggling. 

Below is the discussion we had with Nilanka;

The first wave of Coronavirus in Sri Lanka instigated forms of discrimination in the society, racism to name one. We have also seen some platforms administering comparison between Coronavirus and HIV confusing the public. Why do you think this happened?

This may have taken course because they are both infectious viruses. I think there are parallels to people in terms of communities that are being affected. At least within the HIV sector, there have been communities that were more affected by HIV than others. Because this is something within the community, there is also the component of infection causing death. So, there is a pandemic, where similarities might come to play between HIV and Covid-19.

If we touch on forms of discrimination from society and racism, my opinion would be the lack of comprehensive information circulated on both types of viruses – where the problems start from. We tend to fear things we don’t know. So, we blame whoever the others that are in such a situation. HIV was especially feared due to how it was described in media.

But I don’t want to take away from the fact that the severity in which HIV was described at the time was taken by people in a feared outcome. But given how it was handled back in the 90s as opposed to information we have right now, I think we see a stark difference in terms of information and awareness, along with mobilising communities, which is the same platform that we see discrimination is starting off from. Because if you look at someone as being able to cause harm or an infection towards you, you project fears around the communities.

I think it’s around the understanding of it, and how infection travels and how it could be infectious. This is also affected by the lack of proper mobilisation of community in terms of talking to people about bracing themselves about the situation. I think that’s where most of these issues come from.

The worst-case scenario of any disease or medical condition without medication would be death. There is no argument to it. Death, by all moral standards, should never be publicised upon addressing a person’s health. But why do people often tend to associate HIV with death?

I think this is mainly because of the lack of information coming from authorities around the infection – to talk about the literacy around treatment and what that means. We still don’t widely talk about how treatment can be used as prevention. We don’t talk about how HIV is controlled by medication, and how there is no transmission if someone is virally suppressed. This is why we still go back to the message “AIDS Maaranthikai” (AIDS is deadly) that was there in the 90s, for that’s the kind of impression people still have in their mind.

Sri Lanka was exposed to a second wave of COVID-19. How hard is it for people living with HIV to combat the threat of the COVID-19 contagion?

The socioeconomic background plays a big role in this situation. If you’re someone who is able to work as well as seek treatment, or if you’re in contact with the clinic, then it would be very easy for you to manage the situation, because you have constant networking and communication. If you’re adversely affected because you don’t have a job amid lockdown in the areas you’re living in, you may not be having a way of obtaining medication. That’s when it becomes a big problem.

People also try to prioritise what is going on in their lives, so if you or your family don’t have food, your priority would be feeding them, to which you’re going to pay more attention. I think within the current situation, what we keep hearing is that people who are within places that are under lockdown are more focused on getting their day-to-day essentials, so that their livelihood is sorted instead of medication. At this distinction, medication may come as a second thought or an afterthought.

What about PLHIV persons in the elderly community? Do you think their age plays as a contributing factor to the aforementioned issue?

There is a fear, because there is always a pre-existing condition that comes into consideration. An elderly person living with HIV does have a compromised immune system. However, we don’t have enough information to suggest that someone who has a compromised immune system, like HIV, has an added threat because of Covid-19. But I think it is safe to assume if your immune system is compromised, or if you’re at a low viral-load, or if you have any pre-existing condition like heart disease or diabetes, definitely there is a higher risk of mortality due to Covid-19.

In this backdrop, we have to circle back into information, and how well within these sectors are communicating, not just with the elderly community, but people in general living with HIV. How much of a networking that is happening between the clinics and the system that is providing care as well as the people themselves would be important.

Do you believe that the robustness of the HIV Response in Sri Lanka remains intact in the Health Sector despite priority on COVID-19 eradication? What are the shortcomings?

There are definite challenges around the Covid-19 situation. I think we don’t have methods of deploying testing services at this time. There isn’t a way of getting people tested meeting targets, to name one. I don’t think we’re prepared for the pandemic situation within the HIV response.

I also think there needs to be a more strategic outlook in terms of what we want to achieve despite the pandemic situation, and realign some of those objectives with the current situation. So, I think there is a challenge in terms of properly strategizing what is important and what needs to get done within the short term as well a long term.

So, the lapse is in resources and the staff cadre, in terms of responding to the situation. But there is also a huge lapse in the strategic outlook in terms of achieving some of the goals. Because our goals are pretty ambitious looking at five years in terms of ending AIDS and we haven’t realigned some of those strategic objectives in the context of pandemic.

MSM is a popular term mentioned in the National HIV Response. But coming to mass media this is often confused with homosexuality. What is the difference? 

MSM stands for Men who have Sex with Men. MSM and homosexuality are two different things. We do live in a country which necessarily does not identify gay and bisexual persons as regular terms. So, this is why there is sensationalisation around gay and bisexual men, or the community.

The main difference would be – gay and bisexual is a self-identified term which expresses one’s Sexual Orientation, explicitly or within close contact, or within healthcare sectors. MSM on the other hand is a behaviour. It’s easier for the HIV response to look at the behaviour because it also then expands the communities that we work with, regardless of whether you take on yourself as a man who had sex with another man, or whether you look at it as a lifestyle, or something that you do once in a while.

By calling the behaviour out, you can better provide services and depoliticise it as well. Because you’re not then linking it with an entire community that has self-identified as a sexual orientation. Therefore, it’s easier to look at the behaviour than an identity.

What is the difference between Pre-Exposure Prophylaxis (PrEP) and Post Exposure Prophylaxis (PEP)?

Should one feel that they’re at the risk for HIV, Pre-Exposure Prophylaxis (PrEP) is something that is taken before one comes into contact with a situation that puts them at risk of contracting HIV. It’s either taken as a daily dose, or in some situations taken to prevent the risk. Post-Exposure Prophylaxis (PEP) on the other hand is something that is taken after one had an exposure towards HIV. There is also a clear difference between the type of medication that is provided. But I think those are far more technical.

In simple terms, PrEP is something you take before, and PEP is something that you take after.

What are the benefits of using PrEP?

The main benefit would be protecting yourself from HIV. In the present, we have enough data to suggest that PrEP is a good way to prevent sexual risk. But it’s also something that’s good in terms of providing as harm reduction for persons who either continuously, or occasionally, use drugs, and mix drugs with sex. So, it’s a way of reducing the amount of harm – under the context of HIV. It’s a preventative method.

It also helps reduce stigma around living with HIV as well. Because, once you have access to something like PrEP, you’re less fearful around someone who’s living with HIV, regardless of other scientific data that’s safe to suggest whether you’re virally suppressed, that you can’t get transmitted. This will be known in the same manner in which you feel protected by using a condom – you will be protected from PrEP. 

So, it helps break stigma around HIV, living with HIV and interacting, dating and having sex with someone who’s living with HIV. It gives one a sense of security because you know that you’re protected from HIV, so there is a psychological safety that one feels around it.

The government has signalled green for PrEP promotion; a good initiative. To whom PrEP is distributed by the government at the moment? To what group?

The Pilot Project for distributing PrEP has started since the first of October. Speaking of to whom PrEP is distributed, there is criteria in terms of distribution. But we’re trying not to label it as an intervention towards a particular group, but given that there is a high prevalence among some components, say MSM (Men who have Sex with Men) or TG (Transgender) persons, for contracting HIV, they’re prioritised.

So, let’s say there is criteria that prioritises people who are at a higher risk, in terms of accessing PrEP. Given that it’s also a pilot program, it prioritises people who’re willing to engage in the procedure, who’re willing to provide data and information. Other than being part of a regular intervention, you also need to be committed to the Pilot Program. 

PrEP is described as a good preventive measure. But PEP, by definition, is an emergency response upon the risk of contracting HIV. Unlike PrEP, why is PEP vaguely addressed in advocacy? Are stakeholders holding a separate campaign for PEP advocacy as well?

No. The government regulation on PEP is that it is something that is provided for healthcare workers, who come into contact with a risky situation, a needle injury to name one. They, however, do provide a prescription for PEP for sexual exposure, where you’re able to obtain PEP from outside, at the moment. However, compared to getting it for free from the National STD/AIDS Control Program (NSACP), it’s a big cost to incur, if you’re getting it from outside.

There is a lapse. Given that there is a low prevalence in the country, it’s very difficult to pinpoint and say that just because you had a condom rupture, or engaged in unprotected sex. If the person you’re engaging in unprotected sex with is not a known person who’s living with HIV with a high viral load, it’s a difficult situation to say if you’re at a risk of contracting HIV, or not. At this point, some of the healthcare sectors, or the NSACP is concerned around providing PEP.

This remains arguable at this point because any initiative to reduce the chances of contracting HIV should be employed. But at the verities they’re providing you the option to get it from outside, should you feel that you’re at a risk of contracting HIV.  

World AIDS Day Walk 2019 | READPHOTOS archives

There were early arguments between authorities and stakeholders that preventive measures such as PrEP were unnecessary, in the context of HIV intervention. Sometimes it was argued by certain parties that PrEP promotes sex. This led the topic to remain as a mere term in the reports over the years. How do you describe this scenario? 

The National STD/AIDS Control Program (NSACP) was built on a STD programme. I think the main issue here was their fear that there would be a high number of STD cases and we may not have the most up-to-date ways of understanding certain STDs. There might be a high prevalence of STDs. Given that PrEP allows you to have sex unprotected, without a condom, or without the fear of HIV, there was also the fear of condom-less sex, and also the freedom to have more sex. Given that the whole HIV program is centralised, there was a fear whether resources should be allocated for this preventative method in particular.

As a response over the years, what was shown is that this was a great way of getting people to come into the healthcare sector regularly. Because, is one to come in for PrEP, they’re also given the opportunity to undergo more STD testing on a regular basis. This is also an opportunity to get people who wouldn’t have accessed the National Program to also come in. So, some of those arguments were what led to providing PrEP in the Pilot Program. But I think it was mostly misguided in terms of halting some of these things in a manner of gatekeeping in this initiative.

Sri Lanka held its first promotion of PrEP at World AIDS Day Walk 2019 | READPHOTOS archives

Why are people of diverse sexual orientations and gender identities considered as key populations towards HIV prevalence?

Because there is a high concentration of HIV cases among, let’s say gay, bisexual and transgender women. It isn’t to say that heterosexual people can’t be affected by it. It means that when we look at the numbers, there is a disproportionate amount of key affected people compared to the total number of populations that you look at within those communities, who’re affected by it.

Also, I think they [people of diverse SOGIE] take a more liberal approach towards sex. These are some of the reasons why they are looked at as key populations. But it also can take a programmatic approach. Look at it this way. You have a limited amount of resources allocated for certain interventions, and if you can’t find ways to prioritise where those resources should go to, it is not then used effectively. So, when you start looking at how to prioritise certain things. It makes more sense to look at certain communities or populations such as persons who’re engaged in sex work, persons who use drugs, gay and bisexual men, to utilise some of these resources to kickstart the interventions.

Having said that, there is something that I always say – Yes, it’s great for preventative methods to look at key populations, but it doesn’t help breakdown stigma around HIV, to only look at key population members. Because key population members will inevitably become part of the general public. If you do not parallelly educate the general public around treatment and prevention, the stigma around HIV will prevail.

So, as much as we do look at key population members, there needs to be more involvement of the general public in terms of creating awareness, if we need to effectively achieve our target of ending AIDS in 2025.

What does U=U stand for?

U=U stands for undetectable equals un-transmittable. When someone is on HIV treatment, or ART/ARV (Antiretroviral Treatment), one reaches a viral load at one point that is undetectable. In different countries, that means a different number in terms of viral load. Generally, as the viral load reaches a smaller amount, we say that one has reached the point of viral suppression.

Once you’re virally suppressed, research indicate (there are four researches that have been conducted with heterosexuals as well as same sex couples who’re zero discordant (one person is HIV positive and the other person is not)) that there is zero transmission that has been found, if the person living with HIV has an undetectable viral load. This was where the movement around undetectable equals un-transmittable comes from.

Does HIV status matter in a relationship?

This would be quite a loaded question. It doesn’t matter between two people. But when someone is in a relationship, there are also other social elements that can affect. There is a medical standpoint, as well as a health standpoint. So, being able to disclose one’s HIV status is a privilege that a PLHIV has.

I don’t know if socially we live in an environment in Sri Lanka that is conducive of it. Because there is a lot of stigma still around HIV and PLHIV. So as important as it is in a relationship to be able to disclose someone’s HIV status, it is not important to disclose it because as a person, it’s something you have to manage on your own.

If you have an undetectable viral load, you’re not essentially putting anyone else at risk of HIV. But, if your HIV status is disclosed and that affects you badly, then yes, there is a disparity. Because what happens when a relationship ends, you don’t want anyone else to know about your HIV status. So, it depends on the context of it. But ideally it shouldn’t.

How should the National HIV Response in Sri Lanka be improved in view of inclusivity to all communities leaving no one behind? 

Something I have seen in the National Program is that they tend to look at themselves as a mark of progress. So, they tend to look at themselves – say five years ago – and see how much they have achieved over the years as a program, as opposed to how much they’re achieving globally.

Having it said, we have come a long way since my engagement with the national program, which is about seven-to-eight years now. These changes in terms of how responsive they are, the reputation, how they address certain issues that come up within the clinic system are quite progressive. So, I think they have progressed over the last eight years, but I think there is a lot more that can be done around it.

I think there is also progress in terms of including trans persons and providing them the opportunity to choose which side of the clinic they can go to. Because the NSACP is also gendering in terms of a Male section and a Female section, so trans people are allowed to choose which section they feel comfortable accessing.

Having said that there may have been one or two instances when a person who self-identifies as trans, or as a female, was expected to meet the social norms of what a female looks like, or how a female should dress. There are barriers in inclusivity. There is lack of understanding on what stigma and discrimination means to a key population. Because most of the service providers are either cis-gender or heterosexual, or leading heterosexual lifestyles. So, there is a lack of sensitivity in terms of understanding sexual and gender minorities and what stigma and discrimination means to them.

But looking back at the National Program over the years, we have come a long way since where we were 5 – 10 years ago.

How strong is the relationship between HIV Advocacy and HIV Service Delivery in Sri Lanka?

Let’s say that the program has more of a clinical approach, which, I believe, is attributed to the speciality of the National Program. They do take a clinical – medicalised approach in it, which then loses a certain sense of how you look at sensitivity for different communities that are affected by HIV.

HIV advocacy has to be at different levels in terms of achieving some of the targets that we’re looking at. But in my opinion, I don’t think that it’s as same as the clinical approach. So, I think there needs to be much more improvement in terms of advocacy working with policy level barriers and also general public related advocacy. Because that’s where the problem is.

Observe some of the test results that are still being received, and close to 50% of people who do become, or who’re known to be, positive within a year, have been living with infection for three-to-five years. This means that they either weren’t comfortable enough to test themselves before, or didn’t have the knowledge to come and get themselves tested.

So, as much as the aftercare and the service delivery aspect of providing for someone who is HIV positive after they’re found to be positive against informing people about getting tested if they have an active sex life, it’s somewhere in between, and part of that I think is the lack of comprehensive sexuality education (CSE) within the school system, and the National Program has a responsibility to push that forward.

Even if CSE may not meet the school curriculum, I think they have the responsibility to push it forward on a university level, or at a higher education level, where adolescents are understood that when people are active sexually, that they need to be responsible about getting themselves tested, not necessarily for HIV, but also for the STDs etc.

Do you think that this endorses the ’90:90:90 Target’? 

There is a bit of contention around the ’90:90:90 Target’ currently. If I may explain what the 90:90:90 Target is – basically by 2020, 90% of the people who are living with HIV are supposed to know their HIV status, 90% of those who know their status should be on treatment, and 90% of those who are on treatment should be virally suppressed. That is the goal of 90:90:90. What we’re failing at this point is – because our cumulative numbers look at all the HIV cases since the 1980s  – the 90:90:90 cascade for the program might indicate that we’re not achieving it.

However, the work around for this has been in the NSACP the previous year. Like I explained earlier, they looked at the cases that were found over the last year and how many of them had been directed towards treatment and how many of those under treatment have achieved viral suppression. So, when we look at that, we have a better understanding on how the program currently functions, and what kind of achievement we have.

Another challenge within the cascade is that viral load testing is carried out every six months. Sometimes there are challenges in terms of resources for viral load testing. So, within a period of a year, we may not exactly see everyone who has been under treatment being tested for viral suppression. So, the numbers seem to have moved.
The problem happens, in terms of how many cases are being detected over a year and do we have a clear reach, or yield in testing, when we’re carrying things out. So, it’s not about the treatment cascade, but rather the testing numbers are where we find a lot more challenges, in terms of achieving targets, which is around the first 90 of the 90:90:90 Target.

The NSACP pledges in its National Strategic Plan that it would ‘pressure the political authority to reconsider laws criminalising sexual minorities, for a stronger response to prevent HIV.’ Do you, as an advocate for HIV and a member of the community, believe that this pledge is being fulfilled? 

My personal opinion is no. It is not being fulfilled to the highest level. I don’t think what can be done is being done around providing better access for sexual and gender minorities – especially the LGBTIQ community. And looking at criminalising laws, I think they exist because the communities understand that there is a ‘need’ for that. If you look at some of the reports that have come out of the STD Program even 50 years ago, there has been mentioning of same-sex behaviour between men, pleading to a certain number of STDs.

The National Strategic Plan for 2018 – 2022 by NSACP

The National Strategic Plan for 2018 – 2022 pinpoints how sexual minorities are criminalised by law

The National Strategic Plan for 2018 – 2022 urges the political authority to revisit and repeal laws criminalising sexual minorities

The lack of disclosure around this may be a problem, in terms of understanding the proper numbers around the situation. So, for 50 years, we’ve known that this fear of disclosing one’s sexual behaviour has hosed challenges to the Program. Yet, nothing has concretely been done in order to advocate for better laws around them.

In terms of discrimination, they are discriminated less in the present context, but that doesn’t guarantee people coming in and disclosing their sexual behaviour more openly. Because, if you look at some of these situations – more recently it has come to light that legal cases are still being filed under the criminalisation law. There are things that have been carried out by the National Program that still can be seen as problematic and not in rhyme with their National Strategic Plan. So, I don’t think there is enough being done within the Program in order to address criminalisation of sexual minorities.

What is your opinion on the Press’ take on information pertaining to HIV, or any other chronic medical condition? Should they be acting in a more responsible manner towards reporting?

I think the Press goes with a sensationalised approach, in the move to sell their papers, or get clicks on situations, so they lose the humanitarian aspect of it. You have to understand that every case is a person. Every number is a person, who has a life and a social circle, being someone who has had a life-changing experience with the current situation. This is not necessarily because of the disease itself, but of how the disease is being perceived by society, and how media is contributing to this perception of it.

So, I think there needs to be far more responsibility taken from media in terms of public health and educating the people on the current situation, and breaking down the stigma they themselves have created or perpetuated over the years. Definitely, there needs to be a lot more that should be done. With that support, I believe a lot more can be achieved in terms of reaching people and getting them to get tested and lose the fear around HIV itself.

We were told that you also have expertise in advertising and digital marketing. How do you think marketing can be used as a strategy to sensitise the public on HIV alongside Covid-19?

Speaking of digital platforms, it’s a really easy way to get through to an individual. As controversial as it may seem, digital platforms are able to reach individuals based on certain behaviour patterns. Using that in order to provide information to whom information may not be provided from regular mediums, it’s a great way of utilising them.

For an example, Facebook, as controversial as it may sound, probably knows if you’re gay, bisexual, or having tendencies of either. Like it or not, that’s where we are living at the moment. So, some of this information can be used for social benefit.

Alongside Covid-19, I think a lot more can be done in order to provide, (let’s say contract tracing) via making information available. Because there is geo-location related information that is communicated. For general awareness related information on the other end, it’s easier to package certain information. Right now, what is being done is that a lot of this information is highly medicalised and it’s not necessarily understood by the public.

So, having these information taken and putting them in terms that are understood by the people is another way that marketing can help. It’s also a way to break down some of these barriers we have in terms of getting across comprehensive knowledge, in a more approachable and understandable way.

What is your message to the general public on solidarity and equal treatment?

There would be a lot of people around you that are either part of a sexual minority or a gender minority. There are people at risk for HIV, or already living with HIV. There are people within the general public that may have some understanding, or no understanding at all. I understand that if something does not affect us, we don’t have the need to educate ourselves around it. But I think educating yourself about sexual and gender minorities, HIV/STDs and destigmatising sex itself is a good start to begin building solidarity and acceptance around people who are affected by these things. Help them to overcome those barriers without causing barriers to yourself. Look at ways that you can educate yourself, but also provide that education to other people who may find them useful. Always getting the right information and pushing that information forward is the biggest message I can give.

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