In 2017, Rommel (not his real name; for privacy) created a Twitter account. As an HIV advocate, he noted that there are a lot of HIV-positive people there. “They ask: Ano ang gagawin namin (What do we do) after we test HIV-positive?” Rommel said. And so “I reached out to them.”
Initial “successes” included “getting some people tested for HIV, giving counseling to those who tested positive (but didn’t know who to turn to; specifically those with ‘alter’ accounts), and linking HIV-positive people to treatment, care and support.”
“Sadly,” Rommel said, “there were (also) a lot who were lost to follow up.”
It is this – the unanswered needs of those in the HIV community – and how social networking sites – in this case, Twitter in particular – can help deal with these needs that triggered Rommel to form Courage Pilipinas in June 2018.
For those not in the know, Twitter is a free service that allows users to post messages of 280 (or fewer) characters. These posts can contain text, photos and videos.
It is reported that one out of three adolescents aged 13-17 use Twitter, making it one of the most popular in the world; closely following the likes of Facebook, Instagram and Snapchat.
Twitter is also used by professionals (including politicians like US Pres. Donald Trump, whose “official” positions are incoherently posted on the site).
Twitter, of course, is now also recognized as relevant in advocacy efforts, including in the promotion of HIV-related advocacy. Various studies have – in fact – been done about this.
In 2015, for instance, Tamara Taggart, Mary Elisabeth Grewe, Donaldson F. Conserve, PhD, Catherine Gliwa, and Malika Roman Isler, PhD conducted a comprehensive systematic review of the current published literature on the design, users, benefits, and limitations of using social media to communicate about HIV prevention and treatment.
In “Social Media and HIV: A Systematic Review of Uses of Social Media in HIV Communication”, the authors recognized that “social media, including mobile technologies and social networking sites, are being used increasingly as part of HIV prevention and treatment efforts. As an important avenue for communication about HIV, social media use may continue to increase and become more widespread.”
The researchers used a systematic approach to survey all literature published before February 2014 using seven electronic databases and a manual search. The inclusion criteria were: (1) primary focus on communication/interaction about HIV/acquired immunodeficiency syndrome (AIDS), (2) discusses the use of social media to facilitate communication, (3) communication on the social media platform is between individuals or a group of individuals rather than the use of preset, automated responses from a platform, (4) published before February 19, 2014, and (5) all study designs.
The search identified 35 original research studies. Thirty studies had low or unclear risk of at least one of the bias items in the methodological quality assessment. Among the eight social media platform types described, short message service text messaging was most commonly used. These platforms served multiple purposes, including disseminating health information, conducting health promotion, sharing experiences, providing social support, and promoting medication adherence.
Social media users were also diverse in geographic location and race/ethnicity, with the studies commonly reported users aged 18-40 years and users with lower income.
An interesting research finding: Although most studies did not specify whether use was anonymous, studies reported the importance of anonymity in social media use to communicate about HIV largely due to the stigma associated with HIV.”
WIDE-REACHING ANONYMITY IN FOCUS
According to Ron* (not his real name; for privacy), who is helping out in running Courage Pilipinas, and particularly basing on his personal experience, “a lot of HIV-positive Filipinos seem to be using Twitter,” he said. “This may be because “it’s easier to express yourself there without exposing yourself.”
Ron’s HIV-related advocacy also started in Twitter. After testing HIV-positive, his alter account became – largely – anti-government, particularly “after I saw the government’s failure to deal with PLHIV issues.” This led to him meeting other PLHIVs’ at first “just eight of us, which grew to 12, and then to 35. Eventually, (we became an informal group) of 150 members.”
In his observation, it is in Twitter where a lot of PLHIVs get courage to reach out to others; “they find a voice there somehow,” Ron said. “It has become some sort of safe space.”
JUST A START
Both Rommel and Ron admit that tapping PLHIVs in Twitter (and other social networking sites) is just a start. “Napapanahon lang (It’s just timely, that’s all),” Ron said.
They recognize the numerous issues plaguing the HIV community in the Philippines – e.g. wrong priorities of the Department of Health (and the government, in general, when it comes to health); shortage of no supplies of antiretroviral medicines; profiteering of non-government organizations; et cetera.
“So we eventually want to (be relevant as a pro-active organization that’s not only available in the virtual world),” Rommel said.
All the same, particularly since PLHIV-led efforts particularly count in dealing with issues that PLHIVs themselves face, “every effort – no matter how small – counts,” Rommel said.
“More than just talk, we act,” Ron said. “And that’s always a good first step.”
To Join Courage Pilipinas or for more information, contact 0917 315 5863; or connect via Twitter account Courage.Pilipinas (@CouragePilipin1).