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Another slogan in HIV fight: ‘Let communities lead’. Will this be another profiteering catchphrase?

Those working to deal with HIV tend to love slogans; this year, it’s ‘Let communities lead’. But will gatekeepers actually allow grassroots workers access to resources, or will the money-hoarding continue at the expense of the infected and affected once more?

A few years back (if my memory serves me right, that was sometime in 2016), I received an urgent text message that asked me to rush to this treatment hub in Alabang in Muntinlupa to interpret for a Deaf gay man who has HIV.

As FYI, there are two sets of background info to consider here.

On one hand, the Deaf community has context-specific concerns, e.g.

  • Filipino Sign Language (FSL) does not have extensive coverage of HIV-specific concerns (e.g. even HIV continues to be spelled out every time it is mentioned);
  • the Deaf community tends to be very, VERY close-knit, so that disclosing one’s HIV status to strangers (e.g. a paid FSL interpreter) isn’t “usual”; and
  • even if/when they may be available, not many FSL interpreters are familiar with HIV-specific issues (e.g. in Cebu City, I encountered an interpreter who won’t sign “sex” because it’s against her religious sensitivities).

And on the other hand, existing service providers have life-changing limitations, e.g.

  • not many, IF ANY AT ALL, of the existing treatment hubs have on-site and/or on-call FSL interpreters, particularly those the Deaf PLHIVs end up trusting;
  • Hearing people have “projects” for the Deaf community, sadly targeting other Hearing people (e.g. as if to claim “We did a project for them first”); and
  • Donor agencies actually keep funding Hearing organizations for projects for Deaf people, instead of directly giving the money to Deaf organizations.

I remember the doctor was confused why I was with the Deaf PLHIV in the room in that treatment hub. Apparently, they “did okay” in past engagements; the doctor wrote on his pad, the Deaf PLHIV took the pad to write his statements, and so on, and so forth. This time, he asked if I am the boyfriend; I had to explain to him I was there to interpret for the PLHIV.

The particular concern then was: After years of taking his antiretroviral medicines (ARV), this PLHIV’s CD4 count kept going down. And so he was getting this or that illness. He – seriously – was confused, after being told HIV is no longer a death sentence, and yet he felt he was headed that way anytime soon.

It was eventually discovered that the Deaf PLHIV and the doctor didn’t understand each other. At all. For instance, he was supposedly told to take his ARV EVERY DAY, and yet his understanding was – as with other medicines – he only had to take his ARV WHEN NOT FEELING WELL.

This Deaf PLHIV is NOT the only Deaf client served by this treatment hub. And yet – here’s the thing – even now, no allocation has been made for FSL interpreter/s to work there as needed.

I was reminded by this with the release of a new slogan, Let communities lead, to mark this year’s World AIDS Day; this is also the title of a new report from the Joint United Nations Programme on HIV/AIDS (UNAIDS) that supposedly stresses that AIDS can only be ended as a public health threat by 2030 “if communities on the frontlines get the full support they need from governments and donors”.

“Communities across the world have shown that they are ready, willing and able to lead the way. But they need the barriers obstructing their work to be pulled down, and they need to be properly resourced,” Winnie Byanyima, Executive Director of UNAIDS, was quoted as saying. “Too often, communities are treated by decision-makers as problems to be managed, instead of being recognized and supported as leaders. Communities are not ‘in’ the way, they light the way to the end of AIDS.”

Truth be told, “Let communities lead” is catchy. It speaks of bottoms-up activism; of inclusion of the voices of those at the fringes of society; of giving voice to the voiceless; yada yada yada.

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But the truth is, we’ve had “inclusive” slogans before – e.g. Leaving no one behind (that also came with its own report in 2018).

But if, as is often said, the proof of the pudding is in the eating, then these slogans have not been making the dent they hope to make.

Note that in 2011, we were only reporting six (6!) new HIV cases per day, zooming to 25 in 2016, to 33 in 2021, and… to where we are now.

And – LET’S STOP ALL THE B.S., PLEASE – this should be seen as a botched “application” of these slogans. Because yes, people still die from HIV; and yes, too many people, to many sectors are still left behind… even with the gazillions spent on HIV.

And so we now have “Let communities lead”.

But seriously, which “communities” are these gatekeepers thinking about?

  • In the Philippines, donor agencies actually provide money for transgender people to non-transgender organizations, which then “implement” projects for these transgender people… after getting their cut.
  • Having worked with the Deaf LGBTQIA community since 2012, they continue to only be invited in seminars as – to be blunt now – token representation of PWDs. Like the aforementioned transgender people, funds are not directly given to them so they can come up with their own projects to deal with HIV on their own.
  • Sex workers are still not given the platform to speak for themselves; and certainly, no budget is given to them so they can deal with the impact of HIV among themselves.
  • PLHIVs particularly in provinces have long complained that they still have no access to viral load testing even if this is supposed to be covered by PhilHealth’s OHAT Package, and yet not a single non-performing treatment hub has been de-accredited by DOH.
  • Non-registered community-based organizations end up: “hired” by bigger NGOs to implement their projects for minimal fees, with most of the budget as well as the credit going to these paper-pushing NGOs; only invited to attend seminars by bigger NGOs (for token “grassroots representation” that looks good on reports); or only “given” subgrants by these bigger NGOs that gatekeep everything (from access to funds, direction of advocacy, and so on).

Shouldn’t we be more questioning, more bitchy about these motherhood statements emerging related to big events? Mainly because – including in HIV advocacy – there are those who profit from the misery of others. And often, these are those who can re-package these slogans into “palatable” bits that tickle the fancy of the funders. And sadly, these bits do not necessarily truly let communities lead.

In any case, a few days ago, I chatted via Telegram with that Deaf PLHIV from that treatment hub again. And his Deaf-related issues while accessing HIV-related services are still there – e.g. there’s a hotline that supposedly ONLY allows phone calls and NOT texting.

The Department of Health still has no efforts for people like him.

HIV NGOs still only invite Deaf leaders as participants of seminars.

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There are still no FSL interpreters in treatment hubs.

Yada yada yada.

So to be blunt, is “Let communities lead” going to be just another good-sounding soundbyte to benefit those hindering the actual infected/affected communities?

The founder of Outrage Magazine, Michael David dela Cruz Tan completed BA Communication Studies from University of Newcastle in NSW, Australia; and Master of Development Communication from the University of the Philippines-Open University. Conversant in Filipino Sign Language, Mick can: photograph, do artworks with mixed media, write (DUH!), shoot flicks, community organize, facilitate, lecture, and research (with pioneering studies under his belt). He authored "Being LGBT in Asia: Philippines Country Report", and "Red Lives" that creatively retells stories from the local HIV community. Among others, Mick received the Catholic Mass Media Awards in 2006 for Best Investigative Journalism, and Art that Matters - Literature from Amnesty Int'l Philippines in 2020. Cross his path is the dare (guarantee: It won't be boring).

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