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Inclusive responses to HIV needed – Bahaghari Center

For Disney Aguila, board member of Bahaghari Center, “it needs to be emphasized – particularly today as #WAD2019 – that HIV can only truly be dealt with if everyone is on board.”

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In early 2019, Jay (not his real name), a Deaf gay man who lives outside Metro Manila, was encouraged by his friends who knew community-based HIV screening (CBS) to get himself tested. It was, he recalled, “the first time someone offered me this service; so I caved in.”

Jay was reactive; and “my world crumbled,” he said.

Though his friends tried to comfort him, telling him that knowing his status is good, “since at least now I can take steps to get treatment and live a normal, healthy life,” Jay wasn’t assuaged. His friends had to eventually go back to Metro Manila, and he worried that he would be left on his own to “find ways to access treatment.” And the same issue that did not make testing accessible for him – i.e. him being Deaf – is now the same issue he believed would hinder him from getting treatment, care and support (TCS).

Jay’s case, said Ms Disney Aguila, board member of the Bahaghari Center for SOGIE Research, Education and Advocacy Inc. (Bahaghari Center), highlights how “numerous sectors continue to be ignored in HIV-related responses.”

Aguila, the concurrent head of the Pinoy Deaf Rainbow, the pioneering organization for Deaf LGBTQIA Filipinos, added that “it needs to be emphasized – particularly today as #WAD2019 – that HIV can only truly be dealt with if everyone is on board.”

WORSENING HIV SITUATION

As reported by the HIV/AIDS & ART Registry of the Philippines (HARP) of the Department of Health (DOH), the Philippines has 35 new HIV cases every day. The figure has been consistently growing – from only one case every day in 2008, seven cases per day in 2011, 16 cases per day in 2014, and 32 cases per day in 2018.

In July, when HARP released its (delayed) latest figures, there were 1,111 newly confirmed HIV-positive individuals; this was 29% higher compared with the diagnosed cases (859) in the same period last year.

Perhaps what is worth noting, said Aguila, is the “absence in current responses of minority sectors” – e.g. when even data does not segregate people from minority sectors, thus the forced invisibility that used to also affect transgender people who were once lumped under the MSM (men who have sex with men) umbrella term.

For Aguila, this is “detrimental to the overall response re HIV because specific needs are not answered.”

DEAF IN FOCUS

In 2012, Michael David C. Tan – publishing editor of Outrage Magazine, the only LGBTQIA publication in the Philippines, and head of Bahaghari Center – conducted “Talk to the Hand”, the first-of-its-kind study that looked at the knowledge, attitudes and related practices (KAP) of Deaf LGBT Filipinos on HIV and AIDS. The study had numerous disturbing findings.

To start, majority of the respondents (33 or 54.1%) were within the 19-24 age range at the time of the study, followed by those who are over 25 (21 or 34.3%). Most of them (53 of 61 Deaf respondents) had sex before they reached 18. Many (36.1%) of them also had numerous sexual partners, with some respondents having as many as 20 sex partners in a month.
Only 21 (34.4%) use condoms, and – worryingly – even among those who used condoms, 12 (19.7%) had condom breakage during sex because of improper use.

Perhaps the unsafe sexual practice should not be surprising, considering that not even half (29, 47.5%) of the respondents heard of HIV and AIDS, with even less that number (23, 37.7%) knowing someone who died of HIV or AIDS-related complications. And with not even half of the total respondents (29) familiar with HIV and AIDS, not surprisingly, only 19 (31.1%) considered HIV and AIDS as serious, with more of them considering HIV and AIDS as not serious (20, 32.8%) or maybe serious (22, 36.1%).

The study also noted that the level of general knowledge about HIV and AIDS is low, with 40 (65.6%) of them falling in this category. Only about 1/5 of them (12, 19.7%) had high level of knowledge about HIV and AIDS. Even fewer (9, 14.8%) may be classified as having moderate knowledge level.

For the Deaf community, at least, accessing testing and – if one tested HIV positive – the TCS is challenging because “we’d need Filipino Sign Language (FSL) interpreters who can help make sure we’re getting the right information/treatment/et cetera, Aguila said. And in the Philippines, the numbers of service providers who know FSL remain very limited.

Already there are Deaf Filipinos trained to conduct CBS particularly for other Deaf Filipinos – here in “Stop HIV Together“, a photo campaign stressing the need for inclusion.

INCLUDING OTHER MINORITIES

Aguila stressed that forced invisibility, obviously, does not only affect the minority Deaf community as far as HIV-related responses are concerned – e.g. “other persons with disability continue not to have HIV-related interventions,” she said.

For Aguila: “To truly stop HIV and AIDS, we need to be inclusive.”

Back in the city south of Metro Manila, Jay was forwarded to a counselor who knows FSL so that he can be supported in accessing TCS. Even that was “problematic,” said Jay, because “I was ‘forced’ to come out to someone I didn’t necessarily want to disclose my status only because I had no choice.”

For him, this highlights “how we just have to make do with what’s there; and there really isn’t much that’s there to begin with.”

He feels “lighter” now, however, having started his antiretroviral treatment (ART). But he knows he’s one of the “lucky people with contacts”; and that “not every one has access to the same support I had… and that’s something we need to deal with.”

NEWSMAKERS

Bahaghari Center head, Disney Aguila, trains HIV hub on Deaf issues, basic FSL

Mx Disney Aguila, co-executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center), helmed a training of Hearing people who work in HIV advocacy from My Hub Cares (MHC).

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With HIV service providers still predominantly coming from the Hearing community, it is “just right to make them more aware of the need to be sensitive to the issues of Deaf Filipinos”.

So said Mx Disney Aguila, co-executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center), as she helmed a training of Hearing people who work in HIV advocacy from My Hub Cares (MHC).

“Deaf people, including Deaf LGBTQIA people, are also at risk for HIV infection, and yet existing HIV efforts often exclude them,” said Aguila, who enumerated – among others – the lack of Filipino Sign Language (FSL) interpreters in HIV facilities, absence of FSL-sensitive IEC materials on HIV, et cetera.

Aside from basic FSL lessons, Mx Aguila also gave lectures on specific issues faced by the Deaf community when trying to access HIV testing, and – if one tested HIV positive – access treatment, care and support services.

For Ico Rodolfo Johnson, who helms MHC, it may be cliché, but “we need to make real the saying that no one should be left behind.” In HIV-related efforts, this includes “persons with disability, such as Deaf people, who need to be included in our efforts.”

In the end, said Mx Aguila, “we really need to do more to ensure we’re truly inclusive… and that’s exactly what we’re doing with these trainings.”

To invite Mx Disney Aguila for talks on Deaf LGBTQIA issues and on inclusive development, email info@bahagharicenter.org, or directly contact her via Facebook.

For more information on the inclusive HIV service delivery of My Hub Cares, head to Unit 607 Tycoon Center, Pearl Drive, Ortigas Center, Pasig City; call 0917 187 2273; or visit their Facebook page.

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NEWSMAKERS

‘Red Lives’ reading slated on June 29 to shed light on experiences of people infected, affected by HIV

To shed light on the experiences of people infected and affected by HIV particularly in the Philippines, Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. and Outrage Magazine scheduled an online launch cum book reading of “Red Lives”.

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To shed light on the experiences of people infected and affected by HIV particularly in the Philippines, Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. and Outrage Magazine scheduled an online launch cum book reading of “Red Lives”.

Dubbed “Beyond the pages”, the book reading is slated on June 29, 2023 at 6:00PM via Google Meet.

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This is done in partnership with Mujer-LGBT Organization, Project Red Ribbon, Side B Philippines, My Hub Cares, and Positive Elders Philippines, Inc.

UNTOLD STORIES

“Red Lives” – written by Outrage Magazine editor in chief Michael David Tan – contains “creatively retold” stories from within the HIV community, from both infected with HIV and affected by it.

For Stephen Christian P. Quilacio, HIV project manager of Bahaghari Center and concurrent Mindanao correspondent of Outrage Magazine, “‘Red Lives’ holds immense significance to me. This book serves as a powerful testament to the experiences, struggles, and triumphs of individuals infected and affected by HIV. It provides a platform for their voices – for OUR voices – to be heard, acknowledged, and understood,” he said. “For Bahaghari Center, Red Lives is not just a book; it is a symbol of resilience, empowerment, and hope. It amplifies the voices of the local HIV community, provides a platform for their stories to be shared, and challenges us to create a world free from discrimination and judgment.”

Quilacio – who lives with HIV – added: “Storytelling encourages us to speak truth to power, to take chances, and to support fresh, different viewpoints. We are not alone, the ‘Red Lives’ serves to remind us.”

COMMUNITY THEATER

But “Red Lives” actually hopes to broaden the HIV discourse in the Philippines. To start, it goes beyond statistics and medical jargons, and delve into the personal narratives of those living with HIV, and are affected by HIV.

“This way, it humanizes the HIV community, shedding light on the challenges they face, the resilience they embody, and the discrimination they encounter. By sharing these stories, the book hopes to foster empathy, compassion, and a deeper understanding of the realities faced by the community,” said Aaron Moises C. Bonete, administrative officer of Bahaghari Center and concurrent managing editor of Outrage Magazine.

The stories in “Red Lives” are also produced via theater advocacy, so that “the stories are brought straight to the people,” Bonete added. This way, “we expose people to viewpoints that we may not have previously considered or been aware of in the field of HIV. Hopefully this teaches more people to be more empathetic to those whose lives were touched by HIV.”

For Bonete, “theater can contribute to our understanding of what it means to be human, and staging ‘Red Lives’ humanizes real HIV stories. These stories need to be shared, listened to, and passed on.”

Bonete added: “With the book reading, we hope to create a safe, affirming, and inclusive environment for dialogue and reflection, we aim to break the stigma and foster a deeper understanding of the challenges that serve as an opportunity to engage with diverse perspectives and foster empathy among participants while promoting a community that stands in solidarity with those affected by HIV.”

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BIG ADVOCACY

“Red Lives” is, in the end, “a call to action for individuals, organizations, and society at large,” said Quilacio. “It is a reminder of the importance of supporting and advocating for the rights and well-being of people living with HIV, and even those affected by it. By coming together, we can challenge misconceptions, dispel myths, and work towards creating a more inclusive and compassionate society.”

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NEWSMAKERS

Bahaghari Center, Outrage Mag publish book creatively retelling stories from PH HIV community

Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. and Outrage Magazine released a book, “Red Lives”, that author Michael David C. Tan said contains the “creative retelling of stories from the local HIV community.”

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To give face to people infected and affected by HIV, Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. and Outrage Magazine released a book, “Red Lives”, that author Michael David C. Tan said contains the “creative retelling of stories from the local HIV community.”

The Philippines now has 54 new HIV cases per day. In March 2023 alone, 2,078 news HIV cases were reported, a 35% increase to the number for the same period last year. Majority (97%) were male, with most of them belonging to the 15-34 age group (including 48% from the 25-34 age group, and 31% from the 15-24 age group. Notably, 125 of the cases reported in March involved 10-19 year old Filipinos, with 103 of them infected through sexual contact.

“Year-on-year, the number of Filipinos getting infected with HIV has been increasing from ‘only’ 13 per day in 2013 to 41 in 2022 to the 54 new HIV cases we now have per day,” Tan said, “and with younger Filipinos the most affected sector.”

For Tan, it is “important to stress this since HIV still kills… at least in contexts like the Philippines.”

Also in March, 57 deaths were reported due to any cause among people with HIV; since 1984 when DOH started reporting on this, 6,474 deaths were already reported due to any cause among people with HIV in the country. Sadly, only over half (67,194 of 114,008) of the total number of PLHIVs take ARVs; meaning, not everyone has access to life-saving medication.

All these numbers are important, Tan said, as they “show us the worsening HIV situation in the country.” However, “these numbers do not tell the full story because all Filipinos living with HIV, and their loved ones looking after them have stories to tell.”

“Red Lives”, Tan said, hopes to highlight some of these stories.

“Red Lives” has sections on: finding out one’s HIV status; looking after minors with HIV; dying and death; HIV for Deaf LGBTQIA people; transgender-specific HIV-related issues; treatment, care and support; and loving beyond HIV.

“Part of the fight against HIV lies in hearing of, and hopefully understanding of the stories of people,” Tan said.

Tan aded: “We all should ask: Why do people engage in behaviors that put them at risk for HIV infection? What are their experiences when they test HIV-positive? How do people around them react? Aside from their medical condition, what continue to be challenges for PLHIVs? And with their status, what continues to inspire them to do better in life?”

For Tan, “answers to such questions put a face on a social issue, thereby helping us understand why the country’s HIV situation is where it is now; what we can do to better the situation; and… what we can similarly do to better the lives of those infected AND affected by HIV.”

With “Red Lives”, the intention is “to start telling these stories so that, hopefully, they’d not only be heard but eventually be listened to.”

COPIES OF “Red Lives” ARE AVAILABLE FROM BAHAGHARI CENTER, AND OUTRAGE MAGAZINE.
CONTACT 09287854244 or 09162727715, OR EMAIL info@outragemag.com.

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