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 email@example.com, or call (+63) 9287854244 and (+63) 9157972229.
It was November of 2013 when an insurance underwriter went to my office and offered me an investment/insurance. However, for me to be able to obtain such insurance, one requirement was to be tested for HIV.
I declined and told the underwriter if the insurance have a contestability period for me not to undergo such test. To cut the story short, I got the insurance without the medical requirement.
Days passed, I felt uneasy and I wanted to make sure if I was really clear from HIV. And for me to know, I had to get tested. It took me so much courage that I embraced the fact of being tested and just accept my fate whatever the result might be.
I went to Hi-Precision in Kalaw (in the City of Manila). I told the front desk nurse that I wanted to be tested. He gave me a form to fill in. I was a bit hesitant to answer it, but I must, in able to help myself deal with the uncertainty. After filling in the confidential disclosure form, I had a quick blood extraction. The nurse told me to call back after a week for the result.
It’s the due date and I called the health service provider. They told me to call back again after a week. It somehow gave me a feeling of anxiety. But still, I thought of having the best of health. I had no idea that my result was on its way to being confirmed by the STD AIDS Cooperative Central Laboratory (SAACL) of San Lazaro Hospital.
MOMENT OF TRUTH
November 23, 2013 – the moment of truth. I asked for my result and the nurse told me to patiently wait. All I can recall was that most of the nurses were looking at me in a peculiar manner. It took some time before they called me again. Another nurse assisted me at the second floor. She was carrying a sealed enveloped. Every second made my heart pound. Anxiety was gripping me and it took me so long to wait for the final result.
I think I waited for an hour just to know my result with an authorized DOH counselor/doctor. I entered the clinic cubicle and two of them were with me: the Hi-Precision nurse and the doctor/counselor. They started the conversation with a pre-counseling. But my mind couldn’t grasp the torture of waiting for what the result may be. I didn’t deserve such torture of prolonged suspense! I cut them short and asserted myself by being in control. I told them to please open the envelope first then we proceed with the so-called counseling.
And yes! The waiting was over! It’s POSITIVE.
I wanted to cry, my mind floated and it’s like my body was splash with icy water. I maintained my composure and accepted immediately my fate. I choose to be strong and took responsibility for myself. There’s no one to be blamed because I defined my lifestyle, choosing all the actions not in accord.
I didn’t waste time and I called the attention of both the nurse and the doctor to be realistic in handling a patient who is positive. Too much prolonged suspense can truly kill you. I taught them a lesson to be straight-forward the next time, and to be constructive. I guess they were more emotional than me. It truly created a great pain in my heart. The waiting is unacceptable! And I told them to be more responsible with their duty; to empathically feel what a HIV-positive person may feel.
That afternoon, the first thing I did was to drive to the cemetery. I felt that my life will soon pass. I was so lonely, so depressed. I visited my departed relatives in the cemetery and told them that I will be with them soon. I cried as if I was a helpless child. I prayed to the Lord to give me the strength that I needed, to comfort me in my lowest moment. And yes, He did comfort me….
As I read the sealed enveloped sent by the Department of Health, now as one of the numerous HIV positive individuals in the country, I acquired my personal code number. This saddened me so much! It was like a prison number in Les Miserable that was going to be with me in my lifetime.
The enveloped contain the treatment hub from different regions where I can get the anti-retroviral (ARV) medicines for free.
I chose a private hospital where I can receive the free treatment to prevent the spread of the HIV virus in my body so it will no longer progress to AIDS. Well, I am lucky that these medicines are now available. I cannot imagine having this disease 30 years ago. Otherwise, it would have been an automatic death sentence.
The first time I met her, my attending doctor was very pleasant and she told me to undergo a laboratory procedure to know my CD4 – it measures my immune system versus the level or stage of infection from the HIV virus.
My good doctor gave me three type of medicine (since I learned that I was co-infected with Hepatitis B). She prescribed Efavirenz (600mg), Lamivudine (300mg) and Tenofovir Disoproxil Fumarate (300mg). To date, the said medicine is now 3-in-1, so I must just take one caplet a day before I go to bed. It’s like taking a sleeping pill, literally.
I religiously went to my doctor and cooperated with her for my well-being. At first, I felt extreme paranoia when seeing people, from the doctor’s secretary, the pharmacist and the staff in a treatment hub (RITM). I felt somehow “different”… not normal from the rest. It felt like having leprosy during the days when it had no cure; when society isolated you from the rest. A stigma! A curse! That’s how I felt…
But with my healthy mental attitude I moved forward and conditioned myself as if “its okay”… “its okay!” I cannot disclose my status to anyone. I’m too afraid of rejection. And the only best thing to do is to move forward…
I call all the saints and the holy angels to be with me always. I pray to God to give me the strength I need, to comfort me, to heal me and to be with me always. But the reality is, I am HIV positive and the cure is not yet available.
The first time I took the medicine, I totally lost my locomotor function. I had a car accident and my mind was floating. Thank God I am still alive and no one got hurt from the accident. Somehow I can relate that experience to overdosing on illegal drug. Because the body is still adjusting to the drug dosage, it felt like you’re drifting, your mind is not there, you are not in control. There was a lack of focus and concentration, or the feeling of experiencing dementia. This adjustment lasted for months and it truly affected my work because of the feeling of drifting.
My doctor gave me several vaccines to boost my immune system. HPV vaccine (although I am a top), pneumonia, flu vaccine, tetanus, et cetera. This is the only way to keep me going in life and be healthy.
Until my CD4 reached the normal range and my doctor declared that I am physically healthy! This truly made me happy!
But my dilemma didn’t end there. I still had symptoms of having a weak immune system. Sometimes I had skin rashes and had to go to a doctor who specialized with an allergy. All I know is that I have an allergy. I found out it’s herpes zoster. It gave me a burning sensation, made me itchy and had watery skin breakouts located in my upper abdomen. I learned that it’s linked to a weak immune system and the best candidate is a person with a HIV. Wow!
The doctor gave me six kinds of medicines that I should take twice a day (morning and evening). Valtrex 500mg, Gabix 100mg, Dolcet 325mg, B- complex for my nerves, Medrol 4mg and Cefalexin 500mg (optional in case a puss might appear).
DIFFERENT AND AFRAID
All throughout, I felt truly sorry for myself; but at the same time, I had no choice but only to remain strong and courageous to what lies ahead. To be connected with my BIG God. Yes, I learned a lot of lessons from my mistake. No one to be blamed. For being too “adventurous” during my younger years. For being so daring as if the pleasure of the flesh has no payback. I didn’t care as long as I was happy, “gratified”…. such a self-centered me! Take note that with all my efforts of having safe sex, I still became positive.
I cannot disclose my condition to my friends because I am too afraid of their judgement. I am too afraid and paranoid with what they will think about me. It took me some time to disclose my status to my family, whom I know will accept whatever condition and situation I will be into.
And yes, only my family embraced my real situation. I first told my younger sister, then my mom. Not so much talk… Not much explaining why, where, when, with whom. They simply embraced and comforted my troubled spirit.
RESPONSIBILITY LIVING WITH HIV
Now, I believe that I have the responsibility to educate my fellow PLU (“people like us”, a term used to refer to other men who have sex with men, particularly members of the LGBT community – Ed). Whether you are a gay, bi or transgender, I wish each and everyone of you a good life and good health. We all deserve to be happy, to be loved and experience loving sincerely by another person. I believe love is the most powerful of all because it can take away all kinds of fear. And I cling to the most powerful love of all… and that is God’s love.
But let me remind you my friend to be responsible enough. To have safe and clean sex (lovemaking). Don’t be a daredevil because you may just find yourself someday with a “code number” from the health department.
And to those who are diagnosed to be HIV positive, I want to tell you that there is life after HIV.
Suicide? Too much worry? Extreme depression? I believe it is normal at first. But let me tell you, the choice of being and living life to the fullest, to be healthy, to be able to reach out is a choice! To be a responsible individual is a must! I am sharing you all these because I am in the situation and I cannot turn back the hands of time when I was free from this dreaded disease. But one thing certain is I can be of help to those who need advise, empower to uplift the weary soul, and a friend who will listen from the heart without any judgement.
No one else knows the feeling of being ridiculed, discriminated and isolated but from a person who is in the same boat.
I hope and pray that the cure for this disease is on its way. For now the best cure is for you to be informed, or to abstain from sex, or be faithful to your partner, or have safe sex by using condom.
Life must go on and it has in store a lot of good things for us. Define your true purpose in life that you may be whole.
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.
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.
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.
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.
‘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.”
STILL AN ONGOING STRUGGLE
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.
CONTINUING THE STRUGGLE
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.”
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.
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.
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.”
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.
Living with HIV at the time of Covid-19 lockdown
To date, there is still no evidence that the risk of infection of #COVID19 is different among persons living with #HIV. But the #lockdown is worsening the situation of many PLHIVs – e.g. in accessing their life-saving medicines, loss of income/livelihood, exclusion in government responses, depression, et cetera.
“Nakakadagdag ng takot (Covid-19 adds to the fear) of persons living with HIV,” said Anthony Louie David, a Filipino living with HIV.
According to the World Health Organization (WHO), “at present there is no evidence that the risk of infection or complications of COVID-19 is different among PLHIVs who are clinically and immunologically stable on antiretroviral treatment when compared with the general population.” WHO added that “it is unknown if the immunosuppression of HIV will put a person at greater risk for COVID-19.”
However, “until more is known, additional precautions for all people with advanced HIV or poorly controlled HIV, should be employed.” This is because “PLHIVs with advanced disease, those with low CD4 and high viral load and those who are not taking antiretroviral treatment have an increased risk of infections and related complications in general.”
And so for David, because those with weaker immune systems are at higher risk of getting infected with Covid-19, “andoon yung takot (the fear is there).”
Rogeselle Burdeos Monton, also a PLHIV and the research and development officer of the Culture and Arts Managers of the Philippines, said that there’s that “worry within yourself” that because one is immunocompromised, “you might end up being infected with another virus.”
ACCESS TO LIFE-SAVING MEDS
The fear – not just the lockdown – has been limiting.
David, for instance, hasn’t been out of his house for weeks now – e.g. other family members have to do the groceries for him.
David is also troubled that his supply of life-saving antiretroviral (ARV) medicines is about to run out. “My treatment hub is in the City of Manila, and I am now in Biñan City, Laguna (approximately 31 kilometers away).”
Living in a different local government unit (LGU) is also an issue because people from outside Metro Manila (where his treatment hub is) are barred from entering Metro Manila.
At least for Moses Myro Ayuha, another person living with HIV, “luckily, I have supplies until May.” But Ayuha said that there are “blood brothers” who are really having difficulty in accessing their ARVs.
The Department of Health (DOH) tried to remedy this issue.
In March, DOH released an advisory that recognizes that “this current situation poses challenges in accessing life-saving medications… which may result in treatment interruption”, so it is mandating treatment facilities to “exhaust all possible methods to ensure reliable access to PLHIVs to treatment without having to risk increased exposure to Covid-19 when accessing their medicines.”
Meaning: PLHIVs can get their supplies (while the lockdown is ongoing) in other hubs that are nearest to them; or have their ARVs delivered to them, among others.
Monton’s hub delivered his ARVs for him… but he had to pay for the courier/shipping fee on his own, which may be an issue for those who do not have money to do so.
Monton also noted that there are also confusions – e.g. the process of accessing ARVs in hubs not yours, with policies supposedly announced by the DOH causing confusion instead of clarity.
And so Monton said that some end up “borrowing meds.”
David noted how non-government organizations (NGOs) and community-based organizations (CBOs) are stepping up. For instance, there are those that deliver the ARVs to those who can’t leave their houses – e.g. #AwraSafely has some guide for PLHIVs during the time of Covid-19.
Helping is also done to those who have lost their means of living – e.g. the AIDS Society of the Philippines (ASP) gives out some amount to HIV-positive mothers and/or their kids, as well as healthcare providers who are rendering HIV-related services during the Covid-19 lockdown period.
This is particularly helpful to those “na walang kakayanang bumili ng pagkain nila ngayong may lockdown dahil wala ring trabaho ngayon,” David said.
Sadly – and this is worth highlighting – many of the existing solutions are available for PLHIVs in metropolitan areas, such as Metro Manila, where many NGOs and CBOs operate. Outside of Metro Manila, in the provinces, already problematic access to ARVs are worsened by the Covid-19 lockdown. Monton knows of a PLHIV in Laguna, for instance, who had to spend an entire day just to get through a series of checkpoints to access the nearest treatment hub to him; and then when he got there, “siguro nagmakaawa (maybe he begged) just to be given ARVs.”
Like the rest of the population, the livelihood of PLHIVs are just-as-affected by the Covid-19 lockdown.
Ayuha, for one, said that – at least where he’s staying, a halfway house for PLHIVs – they now rely on donations of food packs. “Nakakaraos din (We get by somehow),” he said.
But Ayuha said that “I am unable to do (what I usually do daily),” including giving HIV-related lectures (while working for non-government organizations). “Nabago talaga dahil di ka nga makalabas (This really changed because you can’t go out).”
David is the same; with his income usually sourced from giving HIV-related talks. And with gatherings cancelled because of the lockdown, “walang maasahan kundi pamilya ko lang (I only rely on my family).”
Monton, meanwhile, is a freelance worker, so his earnings are also affected. He may be luckier than most because he has savings; but he knows of other PLHIVs who – even now – are already worrying where to source the money for the incoming months’ bills (e.g. rent, utilities, et cetera).
Monton actually hopes that that the government’s financial support be made more inclusive. “When it comes to evaluating people who are currently financially challenged.” At the end of the day, he added, even PLHIVs are “also tax-payers.”
FOCUS ON SELF-CARE
David said that there are other issues affecting PLHIVs now highlighted by Covid-19 – e.g. depression. To deal with this, he recommends “keeping yourself busy.”
So David said: “Better your immune system because Covid-19 isn’t just going to be here now. Even without the lockdown, Covid-19 will still be there. So gain strength so that when the lockdown is lifted and we’re finally allowed to go out, we know we’d still be safe because we’ve properly prepared.”
Monton gives three practical tips.
First, with being idle affecting mental health, along with the fear of getting Covid-19 and accessing ARVs, “learn how to divert your attention,” he said. “Your fears are valid, but focus on your well-being as a PLHIV.”
Second, take precautions – e.g. wear face mask when going out, disinfect particularly before touching the face, et cetera.
And third, “magdasal (pray),” he said. Maybe not even because one is religious, but for “peace of mind… somehow it helps.”
For Ayuha, “PLHIVs should take precautionary measures… particularly if they go out.” Practically, “wear mask,” he said, though more importantly, “better your immune system… and huwag praning (stop panicking).”
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