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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.



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, or call (+63) 9287854244 and (+63) 9157972229.


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.


Patient H42007XXX


“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.


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.

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.


“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.


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!


HIV service providers should be recognized as essential service providers during COVID-19 – UNAIDS

UNAIDS is urging governments to ensure that HIV service providers from community-led organizations be recognized as essential service providers at the time of Covid-19.



"Physical distancing." Image created by Samuel Rodriguez. Submitted for United Nations Global Call Out To Creatives - help stop the spread of COVID-19.

UNAIDS is urging governments to ensure that HIV service providers from community-led organizations be recognized as essential service providers at the time of Covid-19.

For UNAIDS, as a “cornerstone of the response to HIV, community-led health service delivery has become even more critical in the context of COVID-19, as the needs of marginalized community members and the burden on the health sector are increasing, making it vital that continued provision of HIV, tuberculosis and other health services is secured.” 

These community-led organizations are “providing a lifeline to underserved, marginalized and hard-to-reach populations around the world.”

UNAIDS acknowledged that physical distancing restrictions created challenges for those needing to access essential services, which created an increased burden on community organizations, which are at the center of service delivery.

But “community-led networks and organizations have… developed important working relationships and roles within health and community systems, including in coordination and task-shifting functions. As evidenced in many countries, these capacities can, with proper support, be deployed to facilitate the provision of Covid-19 information, prevention, testing and linkages to care.”

And yet “without formal recognition of the essential nature of their work, they face significant barriers to continuing to provide services.”

UNAIDS urged Covid-19 crisis committees at the national and district levels to:

  • Include the workforce of community-led health care services into the lists of essential service providers and treat them as equivalent to health-care providers.
  • Design physical distancing restrictions and policies in ways that allow community-led services to continue operating safely. Essential services include, but are not limited to, the physical provision of HIV, tuberculosis and Covid-19 and other health services that include prevention commodities, including condoms, lubricants, clean needles and opioid substitution therapy, contraceptives, hygiene kits, test kits, medication, triage and linkage to care, adherence support, packages of food and other essentials, the provision of legal services and protection for survivors of gender-based violence and other forms of violence and discrimination. Particular attention needs to be paid to people with physical disabilities.
  • Provide special authorization to relevant community-led service providers to move freely, with appropriate personal protective equipment, to deliver the services when and where needed.
  • Ensure that community-led organizations, networks and groups be provided with personal protective equipment and training in order to protect themselves and their clients in the course of service delivery.
  • Take urgent measures to ensure the security, and expansion, of existing funding for community-led organizations, so that those organizations can continue to provide services.
  • Ensure inclusive and transparent governance of Covid-19 responses, with decision-making bodies that include representatives of community-led organizations, including those focused on gender, equity and human rights, to ensure that Covid-19 policies are designed to support the range of service providers and activities necessary for an effective and equitable response.

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Groundbreaking study shows efficacy of a long-acting injectable to prevent HIV

When production of affordable cabotegravir can be scaled up, gay men and other men who have sex with men will have the choice of three highly effective ways to use PrEP to prevent HIV infection: daily pills, pills taken before and after sexual activity (event-driven PrEP) or an injection every two months.



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UNAIDS welcomed the announcement that the long-acting injectable cabotegravir is safe and effective in preventing HIV among gay men and other men who have sex with men and transgender women. The HIV Prevention Trials Network (HPTN) 083 study enrolled almost 4,600 HIV-negative people from across more than 40 sites in North and South America, Asia and Africa.

“This is a breakthrough that will have a significant impact on the lives of gay men and other men who have sex with men and transgender women when they are at higher risk of HIV infection,” said Shannon Hader, UNAIDS Deputy Executive Director, Programme. “We are particularly pleased that the study met its targets to recruit substantial numbers of younger black men who have sex with men and transgender women, the very people for whom accessing effective HIV prevention still remains a huge challenge.”

In 2018, UNAIDS estimates that there were 1.7 million new HIV infections, 54% of which were among key populations, including gay men and other men who have sex with men, transgender women, sex workers, people who inject drugs and people in prison.

Pre-exposure prophylaxis (PrEP)—HIV-negative people using antiretroviral medicine to prevent HIV infection—is an important element in the HIV combination prevention toolkit. PrEP allows people to reduce their risk of becoming infected with HIV, particularly during periods of increased risk in their lives. It may also provide reassurance and reduce anxieties when the risks are uncertain.

Once it has passed regulatory approval, and when production of affordable cabotegravir can be scaled up, gay men and other men who have sex with men will have the choice of three highly effective ways to use PrEP to prevent HIV infection: daily pills, pills taken before and after sexual activity (event-driven PrEP) or an injection every two months. Transgender women will be able to choose between injections or daily pills, since the World Health Organization does not recommend event-driven PrEP because of possible drug interactions with some hormones. Injections of cabotegravir every two months are an important option for people who find it hard to take a pill every day, yet remain vulnerable to HIV infection.

The trial was scheduled to continue for at least another year, but the first interim analysis of the data was brought forward a few weeks because of the potential disruption that the COVID-19 pandemic might cause to high-quality clinical trial procedures. The Data and Safety Monitoring Board (DSMB) in the United States of America reviewed the data up to March 2020 and found that there was already clear evidence that cabotegravir was highly effective and not inferior to the currently recommended oral PrEP regimen.

Half of the study group were given oral PrEP and were injected with a placebo; the other half were given a cabotegravir injection and took a placebo pill. The study found a total of 12 HIV infections in the group using the injectable compared to 38 in the group taking the daily pill. The side-effects of both treatments were relatively mild, with only 2.2% of people in the injection group choosing to stop having the injections because of painful reactions. The DSMB therefore recommended that the study be halted and that all participants be notified of the result. The participants will be able to choose which regimen they wish to continue on.

Despite good adherence in the oral group and very few discontinuations in the injection group, the overall incidence of HIV infection in the study was 0.79 per 100 person-years. Planned analyses will explore why those 50 infections occurred among the 4565 trial participants.

An additional study (HPTN 084) is ongoing to establish the efficacy of the long-lasting injectable in non-transgender women. To date, more than 3000 sexually active women in seven African countries have enrolled in the study. Those results are expected in November.

“We are eagerly awaiting the results of the ongoing HPTN 084 study among African women,” said Dr Hader. “We hope that by the end of this year there will be equally good news for women around the world.”

HTPN 083 was conducted by the HPTN and funded by ViiV Healthcare and the United States National Institute of Allergy and Infectious Diseases. Cabotegravir has not yet been approved for the treatment or prevention of HIV as a single agent by regulatory authorities anywhere in the world. ViiV Healthcare plans to use the data from HPTN 083 for future regulatory submissions.

UNAIDS congratulates the research teams and urges continued investment in research and development for HIV vaccines, diagnostics, preventative medicines, treatment and a cure. 

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Gladstone scientists identify a new potential reservoir of latent HIV

New study identifies a type of T cells in tissues that preferentially supports latent infection by HIV.



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Scientists have long known that even in the face of antiretroviral therapy, some HIV virus remains in infected individuals forever, hiding in small reservoirs of cells of the immune system. When these individuals discontinue the therapy, the virus almost always rebounds rapidly from the reservoirs, causing deadly symptoms to re-emerge.

These reservoirs remain the main obstacle to curing HIV/AIDS. But there is at present no easy way of targeting reservoir cells for elimination. Nor can scientists efficiently extract reservoir cells from patients to study them, and, ultimately, find ways to control them.

The reason is that the virus in these cells is silent. As a result, the cells do not carry on their surfaces the viral proteins that would make them easy to find.

Scientists have therefore been looking for other means to pinpoint reservoir cells.

In a paper in PLOS Pathogens, Gladstone Visiting Scientist Nadia Roan, PhD, and her team describe a class of cells that preferentially support latent infection by HIV. These cells are characterized by a surface protein called CD127 and are found in tissues such as lymph nodes, which are thought to harbor a larger share of the HIV reservoir than blood does.

“Our findings suggest that CD127 cells from tissues may be an important population to target for an HIV cure,” says Roan, who is also an associate professor of urology at UC San Francisco.

In addition, scientists can potentially use the CD127 protein as a handle to isolate reservoir cells from patients, and study what makes them able to silence the virus, and occasionally reactivate it.

A New Reservoir?

HIV targets immune cells, known as T cells, that reside primarily in lymphoid tissues, such as lymph nodes and tonsils. Yet HIV infection studies have largely focused on T cells circulating in the blood, which are relatively easy to gain access to–volunteers are more likely to submit to a blood draw than a tissue biopsy.

But focusing on T cells present in the blood is probably giving scientists a skewed view of the reservoir composition.

“We have long suspected that reservoir cells come in different flavors, and that different tissues harbor different types of reservoir cells. But that has been difficult to show because reservoir cells in infected individuals are rare. The vast majority of in vitro models of latency use cell lines or cells circulating in the blood,” says Roan.

Roan and her team, by contrast, have been studying HIV infection using tissue specimens. In previous work, her team exposed tonsil cells to HIV in the lab to see which ones were most susceptible to infection. Using a variety of experimental approaches, the team found that tonsil cells with the surface protein CD127 efficiently took up the HIV virus but only rarely let it replicate. By contrast, another type of tonsil cells, carrying CD57 on their surface, readily supported a productive infection.

That was intriguing, but that did not necessarily mean that CD127 were reservoir cells.

“After HIV enters a cell, the cell still has ways to escape infection,” says Feng Hsiao, a former research associate in Roan’s lab and co-first author of the present study.

One way is to prevent the virus from copying its genome. Unlike the genome of human cells, the HIV genome is made of RNA. One of the virus’s first tasks upon entering a cell is to make DNA copies of its RNA genome, using a viral enzyme called reverse transcriptase.

Cells can hamper this step by activating an enzyme called SAMHD1 that depletes the stores of building blocks the virus needs to copy its genome. There was some evidence that this mechanism might be at play in blood cells.

However, in their present work, Roan and her team found that eliminating SAMHD1 by genetic manipulation did not allow CD127 cells to churn out virus, even though it boosted viral production by CD57 cells.

“This suggested to us that CD127 cells blocked the virus at a later step in its life cycle,” says Julie Frouard, PhD, a postdoctoral scholar in Roan’s lab and the other first-author of the study.

A Preference for Latent Infection

The next step for the virus is to integrate a copy of its genome into the host cell’s DNA. Once there, the viral genes can take advantage of the cell machinery to produce their own proteins, which assemble new viral particles that can go infect other cells.

Reservoir cells harbor HIV’s genetic material integrated in their own genomes, though they somehow silence it. The occasional mobilization of this material permits the release of infectious virus. Did CD127 tonsil cells allow HIV genome integration?

To answer this question, the scientists extracted the genome of CD127 and CD57 cells that had been exposed to virus in the lab. Using genetic tools that can specifically detect integrated viral DNA sequences, they found that both cell types harbored copies of the virus’s genome, even though CD127 cells produced far less virus than CD57 cells did. The CD127 cells appeared to favor a latent infection.

And yet, the virus integrated in CD127 cells is not silenced forever. Roan and her team found that by treating latently infected CD127 cells with agents known to stimulate T cells, they could coax the cells to reactivate the virus.

Hence, CD127 tissue cells could very well serve as reservoir cells in the body, keeping the virus dormant most of the time, yet able to occasionally activate it and release the seeds of a new round of infection.

“The ability of a specific type of tissue T cell to preferentially support latent infection is very intriguing, and can teach us much about how the tissue reservoir becomes established initially,” says Roan.

Controlling the Reservoir

To what extent CD127 cells are a major component of the reservoir in people living with HIV awaits follow-up studies analyzing these cells from multiple tissue sites. Preliminary studies from Roan’s team are encouraging, as they show that the CD127 marker on the cells’ surface can indeed be used to purify enough infected tissue cells from infected individuals to allow further analyses.

Meanwhile, “CD127 tonsil cells exposed to HIV in vitro provide a novel model to study viral latency in tissues,” says Roan.

Roan and her team have already started analyzing what makes CD127 cells uniquely prone to silent infections. By comparing all the genes expressed in CD127 and CD57 tonsil cells, they found evidence that CD127 cells are in a quiescent state that may prevent the expression of the virus’s genes. Moreover, they also found that the virus’s gene products, or RNAs, failed to undergo the necessary processing that would allow them to make viral proteins.

“Ultimately, our hope is that the mechanisms we uncover can be harnessed to control the latent reservoir and move us closer to achieving a cure for HIV,” says Roan.

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‘Remember. And continue acting.’ – BC marks IACM 2020

There are issues that continue to make the lives of PLHIVs, particularly in resource-limited location like the Philippines, difficult. This is stressed by the International AIDS Candlelight Memorial, marked to remember lives lost to AIDS.



In September 2015, Stephen Christian Quilacio asked Michael David dela Cruz Tan, editor in chief of Outrage Magazine and concurrent executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center) if he wanted to join a hospital visit to a person “suspected” to have HIV. At that time, Tan was visiting Cagayan de Oro City in Northern Mindanao, documenting HIV-related efforts of faith-based organizations (FBOs) for the National Council of Churches in the Philippines (NCCP).

Lor’s case was “suspected” because, while he kept saying he already had himself tested and that he’s HIV-negative, the attending physicians may have known otherwise but were still waiting for the patient’s confirmatory test result (from Metro Manila).

“Lor (not his real name) was having a hard time doing just about everything,” recalled Quilacio, who is also Bahaghari Center’s northern Mindanao coordinator. But “through it all, he was adamant in denying the probability that he may have HIV.”

Two weeks after that hospital visit, Lor passed away; this time, from confirmed AIDS-related complications.

Lor’s case is actually still not rare.

From October to December 2019 in the Philippines, for instance, 116 people died from AIDS-related complications. From January 1984 to end-December 2019, 3,730 Filipinos with HIV already died. And – this is worth stressing – this is only the reported cases, which may be lower than the real figures because of under- or non-reporting.

For Tan, the saddest part of this is that “we’re at a time when we’re often told that HIV is no longer a death sentence.” He added that “for many, it still is.”

And exactly because many lives continue to be lost to HIV and/or AIDS that the world marks the International AIDS Candlelight Memorial (IACM) every 17th of May, as a time for everyone to remember these lives lost. Started in 1983, IACM has since evolved to also honor those who dedicate their lives to helping people living with and affected by HIV.

Themed “We remember – We take action – We live beyond HIV“, this year’s IACM is said to be “much more than just a memorial” as “it serves as a community mobilization campaign to raise social consciousness about HIV and AIDS. With almost 38 million people living with HIV today, (it) serves as an important intervention for global solidarity, breaking down barriers of stigma and discrimination, and giving hope to new generations.”

“This is apt,” said Quilacio, “because even now, we still need to act to really make an impact on HIV.”


There are issues that continue to make the lives of PLHIVs, particularly in resource-limited location like the Philippines, difficult/challenging.

In the Philippines, at least, the HIV situation continues to worsen.

To start, the rate of infection keeps getting higher – i.e. 35 Filipinos now get infected with HIV every day. And from October to December 2019, there were 3,029 newly confirmed HIV-positive individuals reported to the HIV/ AIDS & ART Registry of the Philippines (HARP). Sixteen percent (474) had clinical manifestations of advanced HIV infection at the time of testing.

Younger people also continue to be infected with HIV. In HARP’s report, almost half of the October-December 2019 cases (49%, 1,475) were 25-34 years old, and 31% (926) were 15-24 years old at the time of diagnosis.

Then there’s the stigma that leads to discrimination, said Quilacio. “It remains common to hear stories about PLHIVs kicked out of their homes, or from work because of their HIV status.”

Close to Quilacio’s heart is the “disconnect” in the services offered in metropolitan areas versus those in provinces/rural areas. “As a Mindanawon activist, we know that there are supposedly ‘must-have’ services that are not provided to us – e.g. viral load, and even regular/steady supply of anti-retroviral medicines.”

And then there, too, is the profiteering that happens in the HIV community – e.g. organizations supposed to render life-saving services not doing so unless they profit from PLHIVs.

According to Ico Rodulfo Johnson, who helms The Red Ribbon Project, other issues have been emerging, seeming to steal attention away from HIV – e.g. Covid-19.

However, “despite (these), we continue to fight for our rights to improved health care, for awareness and education and against stigma and discrimination related to HIV,” he said. “The challenge is greater but our passion for the HIV advocacy is stronger.”

And this – the stronger passion that pushes people and/or organizations to act – is what’s needed.


Tan urges more action.

“From HIV testing to linking those who test positive to treatment/care/support services to holding non-performing treatment facilities responsible for their failure to do their mandates… a lot still needs to be done,” he said.

For its part, and among its HIV-related efforts, Bahaghari Center – with Outrage Magazine, The Project Red Ribbon, Pinoy Deaf Rainbow and TransDeaf Philippines – trained Deaf Filipinos on community-based HIV screening. This was because of the lack of readily available HIV counselors who know of Filipino Sign Language (FSL). This way, “we empower Deaf Filipinos to start testing among themselves, instead of relying on Hearing people who may not always be there for them.”

And then backed by Youth LEAD and Y-PEER (Asia Pacific Center) – which eyed to address Sexual Reproductive Health and Rights (SRHR) needs of Young Key Populations (YKPs) in Asia and the Pacific – Bahaghari Center released PSAs on HIV for Deaf Filipinos.

For Fritzie Caybot Estoque, past president of MOCAN – an organization providing support to HIV-infected and -affected Filipinos in Mindanao: “We can’t afford to be complacent. We need to do more.”

Estoque – like Johnson – noted how the Covid-19 pandemic “has taught us one good lesson – that stigma and discrimination can do harm more than the disease itself.” And so she calls for people to “end it.”

“To make us more compassionate, extensive and effective, education is still a must both for HIV… and (in this case, also) Covid-19. We can’t afford to be complacent. Still. All the more,” Estoque said.

And so for Tan, “yes, let’s remember – the people whose lives were cut short by HIV, the advocates who paved the way and those who continue working to curb HIV, etc. But let this also be a call for us not to stop now.”

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Women living with HIV prefer long-acting injectable anti-retroviral therapy over daily pill

Adherence to antiretroviral therapy is imperative for viral suppression and reducing HIV transmission, but many people living with HIV report difficultly sustaining long-term adherence over the lifespan.



A new qualitative study by researchers at Columbia University Mailman School of Public Health found that the majority of women living with HIV would endorse a monthly long acting injectable (LAI) antiretroviral therapy over current daily pills.

LAI HIV therapy has completed Phase III trials and is awaiting Food and Drug Administration approval. Study participants were recruited from the Women’s Interagency HIV Study – the largest national study of women living with and at risk for HIV infection. Over half of the 59 women interviewed (56 percent) would choose LAI HIV therapy over daily pills for reasons of convenience, privacy, and perceived effectiveness: in contrast, 34 percent would prefer daily oral pills and 10 percent would prefer neither.

This study is the first to exclusively explore women’s interest in LAI HIV therapy, and one of the first among a non-clinical trial sample, who more accurately represents the population that will be using LAI HIV therapy. The findings are published in JAIDS: Journal of Acquired Immune Deficiency Syndrome.

“Adherence to antiretroviral therapy is imperative for viral suppression and reducing HIV transmission, but many people living with HIV report difficultly sustaining long-term adherence over the lifespan,” said Morgan Philbin, PhD, assistant professor of sociomedical sciences at Columbia Mailman School. We found that long acting injectable antiretroviral therapy was a compelling option among the women we interviewed.”

The researchers conducted 59 in-depth interviews with women living with HIV in six Women’s Interagency HIV Study (WIHS) sites: New York, Chicago, Washington DC, Atlanta, Chapel Hill, and San Francisco from November 2017 – October 2018. The women received care at university settings that will be among the first to administer LAI antiretroviral therapy once it is approved; none of these women were enrolled in clinical trials for LAI HIV therapy.

Women living with HIV have historically been underrepresented in HIV treatment research, including trials for LAI HIV therapy. “It is therefore imperative to understand their interest in this new technology, since it has the potential to transform HIV treatment,” said Philbin.

The mostly male participants in ATLAS and FLAIR LAI ART trials reported a high preference (97 percent in FLAIR, 91 percent in ATLAS) for LAI over daily oral pills and said the side effects — including fatigue, fever, headache and nausea — rarely led to trial discontinuation.

While the majority of women in the Columbia University-led WIHS study would also prefer LAI HIV therapy over daily pills, they also raised significant challenges. This includes more frequent doctors’ visits (every month versus ever 3 or 4 months) and related transportation barriers, a distrust of new and perceived untested technologies and frustration that LAI would relieve some–but not all–of their current pill burden, noted the researchers.

“Our study demonstrated that women living with HIV are open to long acting injectable antiretroviral therapy, and many believe it will provide distinct benefits over daily pills,” noted Philbin. “However, women also described challenges unique to them as women that would need to be addressed in order to ensure that they fully benefit from these new technologies, including the role of children and childbearing, caregiving responsibilities and long histories of medical mistrust. As a result, we want to highlight the need to incorporate women into the process of LAI ART roll out to ensure their inclusion.”

Co-authors include: Carrigan Parish, Elizabeth,Kinnard, Sarah Reed, Lisa Metsch, Columbia Mailman School of Public Health; Deanna Kerrigan, American University; Maria Alcaide, Margaret Fischl, University of Miami Miller School of Medicine; Maridge Cohen, John H. Stroger Jr. Hospital of Cook County, Chicago; Oluwakemi Sosanya, Montefiore Hospital, New York; Anandi Sheth, Emory University School of Medicine; Adaora Adimora, University of North Carolina School of Medicine; Jennifer Cocohoba, University of California at San Francisco School of Pharmacy; Lakshmi Goparaju, Georgetown University Medical Center; and Elizabeth Golub, Johns Hopkins Bloomberg School of Public Health.

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Religiousness linked to improved quality of life for people with HIV

Adults living with HIV were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual.



Photo by Edwin Andrade from

Faith for people living with HIV.

Adults living with HIV – at least in Washington, D.C. – were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual, according to research published in Psychology of Religion and Spirituality.

By contrast, people living with HIV who had the lowest levels of quality of life and more mental health challenges were privately religious, potentially eschewing organized religion due to fears about being stigmatized or ostracized.

“These findings are significant because they point to the untapped potential of encouraging patients living with HIV who are already religious to attend religious services regularly. Scientific evidence suggests that religions that present God as all-powerful, personal, responsive, loving, just and forgiving make a difference in health-related quality of life. By contrast, belief systems and religions that see God as punishing, angry, vengeful and distant and isolate members from their families and the larger community do not have health benefits or contribute to health-related quality of life. People who identify as spiritual also benefit from improved overall health-related quality of life,” says Maureen E. Lyon, Ph.D., FABPP, a clinical health psychologist at Children’s National Hospital, and senior study author.

“In general, patients living with HIV have reported that they wished their health care providers acknowledged their religious beliefs and spiritual struggles. Additional research is needed to gauge whether developing faith-based interventions or routine referrals to faith-based programs that welcome racial and sexual minorities improve satisfaction with treatment and health outcomes,” Lyon adds.

Globally, 37.9 million people are living with HIV in 2018, according to the World Health Organization (WHO). By end-2018, 23.3 million people were receiving antiretroviral treatment (ART); or 62% of the total number of PLHIVs.

A research team that includes current and former Children’s National faculty wanted to learn more about the degree of religiousness and spirituality reported by people living with HIV and the interplay between religion and health-related quality of life. They recruited patients to participate in a clinical trial about family-centered advance care planning and enrolled 223 patient/family dyads in this study.

Fifty-six percent of patients were male. Eighty-six percent were African American, and their mean age was 50.8. Seventy-five percent were Christian.

The researchers identified three distinct classes of religious beliefs:

  • Class 1, the highest level of religiousness/spirituality, applied to people more likely to attend religious services in person each week, to pray daily, to “feel God’s presence” and to self-identify as religious and spiritual. Thirty-five percent of study participants were Class 1 and tended to be older than 40.
  • Class 2 applied to privately religious people who engaged in religious activities at home, like praying, and did not attend services regularly. Forty-seven percent of study participants were Class 2.
  • Class 3 participants self-identified as spiritual but were not involved in organized religion. Nearly 18 percent of study participants were Class 3, the lowest overall level of religiousness/spirituality.

Class 1 religiousness/spirituality was associated with increased quality of life, mental health and improved health status.

“Being committed to a welcoming religious group provides social support, a sense of identity and a way to cope with stress experienced by people living with HIV,” Lyon says. “We encourage clinicians to capitalize on patients’ spiritual beliefs that improve health – such as prayer, meditation, reading spiritual texts and attending community events – by including them in holistic treatment programs in a non-judgmental way.”

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What’s more, the research team encourages clinicians to appoint a member of the team who is responsible for handling religiousness/spirituality screening and providing referrals to welcoming hospital-based chaplaincy programs or community-based religious groups.

“This is particularly challenging for HIV-positive African American men who have sex with men, as this group faces discrimination related to race and sexual orientation. Because HIV infection rates are increasing for this group, this additional outreach is all the more important,” she adds.

In addition to Lyon, study co-authors include Biostatistician Jichuan Wang, Ph.D., and Yao I. Cheng, MS., both of Children’s National; and Lead Author Katherine B. Grill, Ph.D., the former clinical coordinator for this randomized clinical trial who is currently an adjunct professor at the California Institute of Integral Studies.

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