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Paolo: Being HIV-positive as a personal struggle

Meet HIV-positive Paolo, who believes that being PLHIV is a personal journey. “No one can really gauge what PLHIVs feel except themselves. HIV is really a personal thing. At the end of the day, after you separate with the people who listen to you, the depressions would start to kick in. And every time I’m alone in my room, that’s when the tears start to fall – not because I have HIV, but the struggle I experience everyday in dealing with this,” Paolo says.

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This is part of “More than a Number”, which Outrage Magazine launched on March 1, 2013 to give a human face to those infected and affected by the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the Philippines, what it considers as “an attempt to tell the stories of those whose lives have been touched by HIV and AIDS”. More information about (or – for that matter – to be included in) “More than a Number”, email editor@outragemag.com, or call (+63) 9287854244 and (+63) 9157972229.

(THIS IS PART OF A SERIES, WITH THE STORY OF PAOLO SHARED IN PARTS – ED)

He was standing on the balcony of one of the coffee shops in Tomas Morato, puffing his cigarette before he spotted, and then waved at me.

“Hi, I’m Paolo, patient H42007XXX*,” he said to me when we were face to face, introducing himself as he reached for my hand.

Several weeks back, I received an email from an unfamiliar sender, asking if I wanted to write about the “real deal of being a PLHIV in the Philippines”. Having written about the issues facing the HIV community in the Philippines, including the ARV stockout, this was not exactly uncommon.  Outrage Magazine also has a campaign – “More than a number” – that aims to give a human face to those affected by HIV.  But the following day, the same sender sent another email; and this time, it seemed more… convincing.

Dear Mr. Pascual,

I came across your contact details while browsing Outrage Magazine.

I am reaching out to you for an interview. I want to give firsthand details and experiences on what it’s like to be a PLHIV. I want to share my perspective. We can set a meeting so you can listen to my story.

Don’t get me wrong, I’m not asking anything in return, I just want to share what I know and what I have been to in the last eight years; probably, to help and inspire other PLHIVs and to educate members of the LGBT community.

Hoping for your favorable reply.

Regards,

Patient H42007XXX

WAKE-UP CALL

READ:  Can I change the schedule of my ARV intake?

“I remember the time when I found out that I am HIV-positive. It was the summer of 2007. My friends and I usually get ourselves tested every six months because of the kind of lifestyle we were practicing,” Paolo recalled.

Before being diagnosed, he spent most of his nights in different LGBT places in the metro, including clubs and bathhouses. He admitted to partying, drinking, and taking recreational drugs like there was no tomorrow.

He did go to “San Lazaro to register and submit my test results. I felt that it was the right thing to do,” he said.  Paolo also admitted his status to his closest friends, even if kept it from his family.

Even after he tested positive, Paolo’s lifestyle remained as wild as usual.  “I was out every night. Because whenever I’m sober, when I’m alone and the surrounding is quiet, that’s when depression kicks in. Yes, I’m okay. Yes, I already accepted my status. But, things are not that easy. I always need a distraction to take my mind off things,” Paolo said.

After his few initial visits to the treatment hub, he stopped going for four years and only returned in early 2011, when one of his friends also tested positive and asked for his help.

“My CD4 count at that time (in 2007) was 582; it was high enough. But when I went back to the hospital in 2011, it was already 327. I was really worried,” Paolo said.

STARTING TREATMENT

When his CD4 count reached that level, he was advised by the doctors to start taking antiretroviral medications.

Paolo was willing to start the trial period of the treatment, but one of the hub’s policies at that time was for a patient to have a treatment partner before they allow and give them the medicines.

“I have no one to ask,” Paolo said.

He was living on his own that time.

“And although my friends knew my status, I didn’t want them to go through the endeavor I was going through,” he recalled.

READ:  159 reported HIV-related deaths in August as number of new infections remain high

So he convinced the doctors to allow him to start the treatment on his own and assured them that he would comply with all the requirements of the hub.  Paolo was made to sign a waiver, indicating that whatever happened to him, the treatment hub or attending doctors will not be held liable.

“I was given two weeks’ worth of Lamivudine/Zidovudine and Nevirapine. The doctors also gave me a list of allergy-causing food and was asked to avoid them for three months,” Paolo said.

During the first few days of intake, Paolo started feeling pain and was feverish.

“The doctors explained the possible initial side effects of the ARVs; but to actually feel it first hand, it was like hell. Two days in, my whole body was in pain. My fever was rising every day. I wasn’t allowed to take Paracetamol. I wanted to stop taking the medications, but I know it wouldn’t do any good,” Paolo said.

He lost almost 30 lbs after one week. His fever played from 39°C to 43°C, and patches of red marks also started to appear in different parts of his body.

“I was very weak. I called the treatment hub and told them about my condition. I was asked not to stop taking the ARV meds and finish the two-week trial. But before I was able to reach the 14th day, I was experiencing unbearable headaches and muscle pain, it felt like I was going to die,” he said.

The first thing the following day, he went to the hub and waited for the doctor.

He was injected with a high dose of Iterax.

“That morning, the antihistamine that was given to me was really strong. I took the train on my way home. It was really difficult. It was a mix of headache, nausea, and muscle pain,” Paolo recalled.

After one week, he was asked to go back to the hub. He was given another set of ARVs.

“Good thing they shifted my medication to Efavirenz. Even if I feel groggy every time I take it, it’s more tolerable than Nevirapine,” he added.

READ:  New HIV infections in Phl reached 1,098 in May; highest figure since monitoring started in 1984

FEELING LOW

“I remember when I lost weight and when red patches started to appear on my skin, I felt so low. I couldn’t see myself anymore. I wore a jacket all the time so people would not see how ugly I WAS becoming,” Paolo said.

He was also making every possible effort to act and look normal at work, even if it was close to impossible.

“In the office, I was always blank and not functioning normally. Some of my officemates even started teasing me when they noticed the red patches on my skin. I felt really down, I almost felt suicidal,” he said.

Though his friends communicated with him everyday to check his condition, for Paolo, it was not enough.

“Even if I have friends who were there for me, the feeling was so impalpable. It was unexplainable. No one can really gauge what PLHIVs feel except themselves. At the end of the day, after you separate with the people who listen to you, the depressions would start to kick in. And every time I’m alone in my room, that’s when the tears start to fall – not because I have HIV, but the struggle I experience everyday in dealing with this,” Paolo shared.

He also joined different organizations that cater to the needs and welfare of PLHIV, but that didn’t help him either.

“Those support groups, yes, they’re doing a superb job, no doubt about that. But in reality, it’s not them who can and will help you because they don’t really know what you’re feeling, HIV is really a personal thing. Support groups… I have been involved with three of them, and they have not really offered enough support particularly when you’re experiencing a chronic type of depression. Sometimes, crying all by yourself while you’re drunk is better than repeating your story over and over again to a group of people,” Paolo ended.

*EXACT PATIENT CODE WAS REMOVED AS REQUESTED BY THE INTERVIEWEE TO PROTECT HIS PRIVACY

Living life a day at a time – and writing about it, is what Patrick King believes in. A media man, he does not only write (for print) and produce (for a credible show of a local giant network), but – on occasion – goes behind the camera for pride-worthy shots (hey, he helped make Bahaghari Center’s "I dare to care about equality" campaign happen!). He is the senior associate editor of OutrageMag, with his column, "Suspension of Disbelief", covering anything and everything. Whoever said business and pleasure couldn’t mix (that is, partying and working) has yet to meet Patrick King, that’s for sure! Patrick.King.Pascual@outragemag.com

POZ

Study links individual HPV types to HIV infection

Persons with any HPV type, more than one HPV type, or high-risk HPV are more likely to test HIV positive.

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Image used for illustration purpose only; photo by lucas clarysse from Unsplash.com

Individual types of the human papillomavirus (HPV) that are specifically linked to HIV infection have – for the first time – been identified.

In a study published in the journal PLOS ONE, a person with any HPV type, more than one HPV type, or high-risk HPV is more likely to acquire HIV. The study found the following HPV types are linked to HIV: HPV16, 18, 31, 33, 35, 52, 58.

“Although most studies have shown a general link between HPV and HIV co-infection, our findings illustrate the strong relationship between individual HPV types and HIV infection,” said Brandon Brown, an HIV researcher and associate professor in the UCR School of Medicine and lead author of the study. “Some HPV types are more linked to cancer and others to warts. This further illustrates the potential utility of HPV vaccine for men who have sex with men and trans women, not only for HPV prevention but also possibly for HIV prevention.”

Brown, a member of UCR’s Center for Healthy Communities, was joined in the study by Logan Marg of UCR; Segundo Leon at Socios En Salud, Lima, Peru; Cynthia Chen and Junice Ng Yi Siu of the National University of Singapore; Gino Calvo and Hugo Sanchez of Epicentro Salud, Lima, Peru; and Jerome T. Galea of the University of South Florida.

Previous research has shown that HPV, in general, was linked to HIV infection, but the new research team looked at infection with 37 HPV types and found that individual types are linked, “which is more specific than saying HPV is linked.”

READ:  Duterte’s condom criticism imperils Philippine HIV fight

The study investigated the relationship between HPV types and incident HIV infection among men who have sex with men (MSM) and transgender women in Lima, Peru. There were 600 participants recruited at a local community-based health center, bars, clubs, volleyball courts, and via social media. The researchers started with two groups, one with genital warts and one without, and followed participants over two years to see who contracted HIV. Of the 571 participants who completed at least two study visits, 73 acquired HIV in two years – a 6% HIV incidence rate.

Brown has been working in Peru for more than 10 years and has conducted preliminary work on HPV vaccine acceptability in MSM. In his previous work with female sex workers, he found that the HPV vaccine still provided protection to high-risk groups.

According to Brown, the results of the study are “absolutely applicable beyond Peru, and synergize with recent results of studies outside Peru.”

“The fact that our study took place in Peru is irrelevant,” Brown said. “It was simply convenient to do it there with our strong community connections and a high interest in this research.”

Regarding prevention and treatment, Brown recommends the HPV vaccine, widely provided to everyone, regardless of sex, gender, or sexual orientation, before sexual debut, as well as genital wart treatment.

“Even if the vaccine is not provided before sexual debut, there can be strong benefit if given at any time to prevent HPV-associated disease and also HIV,” he said. “We know that HPV is the most common STI, and we know that HPV vaccine works to prevent chronic HPV infection. What we need now is to implement the vaccine in a better way.”

READ:  Same-day HIV testing & treatment improves outcomes for PLHIVs

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POZ

‘Life for a poz is an ongoing struggle. Face it.’ – @pozzieblue

Contributing writer @pozzieblue tested HIV-positive in July 2013, while working as a nurse in the Middle East. He now writes how life has been after he was detained and then deported.

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This is part of “More than a Number”, which Outrage Magazine launched on March 1, 2013 to give a human face to those infected and affected by the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the Philippines, what it considers as “an attempt to tell the stories of those whose lives have been touched by HIV and AIDS”.
More information about (or – for that matter – to be included in) “More than a Number”, email editor@outragemag.com, or call (+63) 9287854244 and (+63) 9157972229.

Photo used for illustration purpose only; by Jason Schjerven from Unsplash.com

BACKGROUND: While working as a nurse in Abu Dhabi, United Arab Emirates, @pozzieblue tested HIV-positive in July 2013. He was placed in an isolated facility in the middle of a desert, and then deported to the Philippines. Months after trying to get his life back together, he shared his story to Outrage Magazine in November 2013. This is a new contributed article from him, sharing how life has changed for him after he tested HIV-positive; and the lessons he hopes others like him learns from life.

After being detained and deported, life was not easy. I felt I’ve went back to zero. I grieved a lot, and sometimes I thought I’ve reached the acceptance phase but the anger and sadness fluctuates every now and then. There was even a time that I went to RITM from my hometown by myself, and I was still struggling from my pneumonia and ARV allergic reaction. I needed to go back to my hub so I could refill my new ARV. I was on MRT train when I felt I was fainting so I’ve decided to sat on the floor to gain my strength and to avoid falling. It felt so terrible and lonely because as a nurse who used to take care different people, nobody cared to approach and ask me if I’m okay.

@pozzieblue: The HIV-positive OFW

This is the reason why I realized that I need to focus on one of the most important aspect of my life, my health. Later on, I discovered twitter. I am grateful because this social media became a great support system to me because the of the fellow poz who have their account there. They have been very encouraging to my PLHIV journey, so I’m truly thankful to them. In fact, I have found some of my true best friends.They were there in supporting me in different ways, specially to my mental health.

READ:  Same-day HIV testing & treatment improves outcomes for PLHIVs

When my health became stable, I started working from different fields. I hopped from the BPO industry, teaching International students and doing online jobs. I was upset because it was hard to start a clean slate. Maybe because deep in my heart, I hold this faith that there is still another world waiting for me, but this virus in my blood inhibits me, as well as the trauma I’ve had. Then I promised myself that my life will not end this way and just like the long-time drama anthology says “Ikaw ang bida ng buhay mo.”

I tried enriching my neurons by finishing my Master’s Degree and improving my English skill. I was spending my earnings in different classes and dealing my thesis. During that time, I was also rekindling my relationship to God. There was a time that I felt He left me, but I realized that during those lowest lows of my life, he was there all through out, but I couldn’t see him because I was blinded with frustration, anger and regrets.

After going through with my Master and passing my English test. I’ve received an information from another PLHIV that he knows a nurse who was accepted to work in UK to practice his profession, despite being a poz. That simple online conversation ignited a hope in my heart. Hence, I started applying for an overseas job again. I can still remember how much worry it caused me whenever I needed to disclose my HIV status to my prospective employers but I’m grateful that they don’t mind it.

READ:  @poz_hero: Learning to accept to move on

To make the story short, I’m now in UK and I just passed my final exam to become a Registered Nurse here few weeks ago. It wasn’t an easy journey, but with perseverance, good health and divine intervention; I was able to fulfill this dream. I remember what Pope Francis said, “When you lose the capacity to dream, you lose the capacity to love, and the energy to love is lost.” This is my new mantra now.

To all my fellow PLHIV out there: life may seem to be a continuous struggle but continue learning and enriching yourself. Ask for help if you think you need one. Pain and sorrow is subjective. I may not know what you are going through but I sincerely wish everyone well.

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POZ

PrEP is safe and effective for widespread use, research shows

Worldwide, there are only 300,000 people estimated to be taking PrEP. This is far too small a number to prevent 1.8 million new HIV infections.

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New research shows that pre-exposure prophylaxis (PrEP) could be given to millions of people worldwide with no increased risk of safety issues during treatment. 

PrEP is a combination of two drugs that people can take before sex to prevent HIV infection. Existing evidence shows that people who take tenofovir disoproxil fumarate (TDF) and emtricitabine (FTC) as PrEP have a 90% lower chance of being infected with HIV than people not taking it.

However, widespread use of TDF/FTC can be justified only if its preventative benefits outweigh potential risks of safety issues. These new results, presented today, show that PrEP is safe to use.

The researchers undertook a meta-analysis of 13 randomized trials with 15,678 participants. People at risk of HIV infection were given either TDF/FTC as PrEP or no treatment (the control, or placebo). There was no significant difference in risk of high grade or serious adverse events comparing PrEP with control. The risk of serious adverse events was almost the same for both groups: 9.4% for those on PrEP and 10.1% for those on placebo. There was also no significant difference in risk of renal or bone adverse outcomes. The risk of bone fractures was 3.7% on PrEP versus 3.3% on no treatment. The risk of significant renal dysfunction was 0.1% on PrEP and 0.1% for no treatment.

“In 2016, there were 1.8 million new HIV infections worldwide and the same number again in 2017,” International AIDS Society President Anton Pozniak said. “Across a range of studies, men who have sex with men have one in 30 chance of contracting HIV in a year. Other particularly vulnerable populations’, such as people who inject drugs or sex workers, have a one in 50 chance of being infected with HIV.

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“Worldwide, there are only 300,000 people estimated to be taking PrEP. This is far too small a number to prevent 1.8 million new HIV infections. Clearly, to have a significant effect on the HIV epidemic, we need to scale up PrEP to reach tens of millions of people worldwide.”

Other PrEP modalities, such as long-acting injectable drugs and antibodies, are being tested in order to offer more choices of how PrEP could be taken.

“Globally, there is a new HIV infection every 18 seconds,” study co-author Dr Andrew Hill, from Liverpool University, said. “Every person newly infected will then need to be treated for life, and could transmit HIV to others. We need radical changes in our prevention strategy to cut new HIV infections down to zero.”

The most widely used PrEP, a combination of TDF and FTC, costs only £40 per year to make. A generic TDF/FTC course is available in the UK for £300 per year and £50 in sub-Saharan Africa. With recent legal rulings, low-cost, generic PrEP is becoming more available. This provides an opportunity, with the decreasing costs making it increasingly feasible to provide PrEP to millions of people at risk of HIV worldwide.

“The World Health Organization updated its official guidelines in 2015 to include the use of PrEP as a prevention method,” Dr. Pozniak commented. “The data is clear and it’s time to globally implement this recommendation.”

These results are supported by another recent analysis, which showed no difference in adverse events between TDF/FTC and a combination of tenofovir alafenamide (TAF) and FTC when taken for treatment with an additional antiviral drug.

READ:  PrEP is safe and effective for widespread use, research shows

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POZ

Roadmap for speedy development of HIV vaccine announced

As scientific discoveries lead to promising new approaches to HIV vaccine development, and with several large-scale vaccine efficacy studies underway, a new strategy takes a fresh look at the major challenges confronting the HIV vaccine paradigm.

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Photo by Sara Bakhshi from Unsplash.com

The Global HIV Vaccine Enterprise, hosted by the International AIDS Society (IAS), launched a five-year strategy to accelerate the development of an effective vaccine to prevent HIV infection. The new Global HIV Vaccine Enterprise Strategic Plan (2018-2023) was unveiled at the opening of HIV Research for Prevention (HIVR4P 2018), the world’s only scientific conference dedicated exclusively to biomedical HIV prevention, in Madrid, Spain.

“This strategy presents an opportunity to address some of the most significant challenges in HIV vaccine development today,” IAS President Anton Pozniak said.

The new strategy evaluates current opportunities, challenges and obstacles in HIV vaccine research and development and recommends a series of steps to:

  • Propel the vaccine pipeline by strengthening strategies to align, amplify and accelerate development of candidate vaccines
  • Prepare for success by tackling priorities essential to clarifying the roadmap for future access to a vaccine
  • Expand resources and engagement by enlisting a diverse community of partners to support and contribute to the field.

The new strategic plan was developed through an IAS-led consultation involving HIV vaccine research and funding stakeholders, the Enterprise Strategic Advisory Group and the IAS Governing Council. The plan advances the ongoing partnership between the IAS, the world’s largest association of HIV professionals, and the Global HIV Vaccine Enterprise, which promotes coordination, collaboration and resource mobilization to accelerate HIV vaccine development.

“While the HIV vaccine landscape offers greater scientific promise than ever before, the field also faces real challenges in terms of aligning scientific priorities, developing the smartest and most effective research studies, maintaining funding and engaging and maximizing the contributions of all global stakeholders in the search for a vaccine,” Pozniak added.

READ:  Defining moments for LGBT Phl in 2014

“The new strategy builds on more than a decade of work by the Global HIV Vaccine Enterprise to identify critical gaps in systems and knowledge, promote collaboration and address one of the greatest scientific challenges of our time.”

As scientific discoveries lead to promising new approaches to HIV vaccine development, and with several large-scale vaccine efficacy studies underway, the new strategy takes a fresh look at the major challenges confronting the HIV vaccine paradigm. Among these are:

  • The increasing complexity of conducting vaccine efficacy trials as more biomedical HIV prevention options become available
  • The need to address critical gaps in scientific knowledge about immune responses to HIV
  • Stagnant funding and the need to increase government and industry commitment and investment to meet emerging vaccine research opportunities
  • Uncertainty about regulatory and access pathways for a successful vaccine.

To address these challenges and others, the IAS/Enterprise plan proposes a series of near-term activities to address critical, of-the-moment challenges, along with longer-term goals and guideposts to measure achievements and guide adjustments in the strategy as the field evolves. The plan’s activities will be sequenced strategically and guided by annual implementation plans – with detailed activities, timelines and deliverables.

“This plan captures the promise and challenges of a unique and exciting moment in HIV vaccine development and offers a roadmap for action to bring us closer to the end of this epidemic,” President of the South African Research Council Glenda Grey said.

“With the support, expertise and convening power of IAS, this new strategic plan will build on the Enterprise’s longstanding role as a both a neutral convener and facilitator of collaboration in the HIV vaccine field and propel realizing our shared vision to develop a safe, effective and globally available HIV vaccine.”

READ:  New HIV infections in Phl reached 1,098 in May; highest figure since monitoring started in 1984

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Health & Wellness

Trans youth lack access to trans-affirming care, which may put them at risk for HIV

One-quarter of youth were less inclined to discuss GSM (gender and sexual minority) identity and sexual health with their primary care providers due to concern that their provider would disclose this information to parents.

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Photo by Mercedes Mehling from Unsplash.com

Many trans youth lack access to trans affirming care, which may put them at risk for HIV. This is according to a study that explored trans youth’s perceptions regarding encounters with primary care providers (PCPs) related to gender and sexual minority (GSM) identity and sexual health.

In “Perceived Barriers to HIV Prevention Services for Transgender Youth”, which appeared in LGBT Health, C.B. Fisher, A.L. Fried, M. Desmond, K. Macapagal and B. Mustanski engaged youth aged 14-21 (N = 228; 45% trans masculine, 41% trans feminine, 14% gender nonbinary) and asked them to complete a survey on GSM identity disclosure and acceptance, gender-affirming services, sexual health attitudes and behaviors, and interactions with PCPs involving GSM identity and concerns about stigma and confidentiality.

A factor analysis yielded three scales: GSM Stigma, Confidentiality Concerns, and GSM-Sexual Health Information. Items from the GSM Stigma scale showed that nearly half of respondents had not disclosed their GSM identity to their PCP due to concern about an unaccepting PCP. One-quarter of youth were less inclined to discuss GSM identity and sexual health with their PCP due to concern that their provider would disclose this information to parents; these concerns were greater among adolescents <18 and those not out to parents about their gender identity. Only 25% felt their PCP was helpful about GSM-specific sexual health issues. Youth who were out to parents about their gender identity and had received gender-affirming hormone therapy were more likely to report receiving GSM-specific sexual health information.

READ:  Amid HIV epidemic, weak government response to unlawful firings, harassment

For the researchers, “trans youth may not discuss their GSM identity or sexual health with PCPs because they anticipate GSM stigma and fear being ‘outed’ to parents.” And so “PCPs should receive transgender-inclusive training to adequately address youths’ sexual health needs and privacy concerns.”

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POZ

159 reported HIV-related deaths in August as number of new infections remain high

There were 1,047 new HIV positive Filipinos reported to the HIV/AIDS & ART Registry of the Philippines in August 2018, higher than the 859 HIV cases reported in July.

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There were 1,047 new HIV positive Filipinos reported to the HIV/AIDS & ART Registry of the Philippines (HARP) in August 2018, bringing the January-August 2018 figure to 7,579; and the total HIV cases overall (from January 1984 to August 2018) to 58,181. The August figure is higher than the 859 HIV cases reported in July.

Worryingly, the DOH reported that for August, there were 159 HIV-related deaths; in July, there were only 30. The figure may even be higher because of under- or non-reporting.

Majority of those newly diagnosed to have HIV in the Philippines are still male – e.g.998 (95%) of the newly diagnosed in August were male. The median age was 28 years old (age range: 15 – 61 years old). More than half of the cases (51%, 537) were 25-34 years old and 30% (309) were 15-24 years old at the time of testing.

Sexual contact remains the main mode of transmission (98%, 1,022). Among this, 87% were males who have sex with males (MSM). Other modes of transmission were needle sharing among injecting drug users (2%, 17). There were eight cases that had no data on mode of transmission.

Only 30,667 PLHIVs are on ART as of August 2018. Most (97%) were males.

Incidentally, the Department of Health (DOH) continues to receive flak for its inaction and misaction when dealing with HIV in the Philippines. In September, for instance, and even if DOH laments proposed budget cuts, it allocated supposedly scarce funds to hold a beauty pageant. To appease critics, it eventually held a rushed Metro Manila-centric “dialogue” with select people living with HIV (PLHIV), although what transpired in the gathering was not publicly shared.

On beauty pageants and messed up priorities in dealing with HIV in Phl…

DOH-accredited treatment hubs also continue to lack HIV-related services (e.g. CD4 count, viral load test), and yet continue to fully benefit from the PhilHealth payment of the PLHIVs.

READ:  Can I change the schedule of my ARV intake?

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