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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

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“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.

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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.

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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

Women with HIV at increased risk of early onset menopause

Study researchers confirmed that women living with HIV experience menopause at a younger age, specifically 48 years, roughly three years earlier than uninfected women. This population additionally had higher rates of early menopause and premature menopause.

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Thanks to medical advancements, HIV-positive women now have a longer life expectancy, exposing them to numerous midlife health issues such as menopause. A new study demonstrates that women with HIV are more likely to enter the menopause transition at an average age of 48 years, 3 years younger than the general population. Study results are published online today in Menopause, the journal of The North American Menopause Society (NAMS).

Newly diagnosed HIV-positive patients who adhere to the latest therapy protocols are expected to live into their mid-70s or longer. That means these patients are now faced with aging issues that affect sexual and reproductive health, including menopause.

The average age of menopause in Canada and the United States is between 50 and 52 years. Previous studies have shown that women living with HIV are at an increased risk of early (age between 40 and 45 y) and premature (age <40 y) menopause (also known as primary ovarian insufficiency). However, this study from Canada is the first known study to determine the average age of menopause for HIV patients, the prevalence of early menopause (between 40 and 45 y) and premature menopause (before 40 y), and other correlates influencing age at menopause.

Study researchers confirmed that women living with HIV experience menopause at a younger age, specifically 48 years, roughly three years earlier than uninfected women. This population additionally had higher rates of early menopause and premature menopause. In addition, lower education and hepatitis C coinfections were also shown to influence the risk of early menopause, with other possible modifying factors including marital status and region of birth.

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Because menopause is associated with changes in mood, sexual function, reduced quality of life, and increased the risk of developing other comorbidities such as heart disease and osteoporosis, a woman’s increased risk of early menopause has implications for healthcare practitioners planning their care.

Study results appear in the article “Prevalence and correlates of early-onset menopause among women living with HIV in Canada.”

“Healthcare practitioners should be aware of the increased risk for premature and early menopause in their female patients living with HIV in order to provide appropriate counseling and management, given the known increased risk for potential adverse long-term health consequences associated with early estrogen deprivation,” says Dr. Stephanie Faubion, NAMS medical director.

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Virus characteristics predict HIV treatment efficacy with antibody treatment

HIV-1 virus characteristics were identified to predict treatment efficacy with a specific antibody treatment using sequence-based methods. The identified virus characteristics may be used to determine if a patient is a good or poor candidate for specific antibody-based treatments in the future, reducing time and cost involved in treating the virus.

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Current HIV-1 therapies have been proven to be highly effective in slowing the progression of the virus in the body with only minimal side effects. The daily antiretroviral therapy (ART) uses a combination of HIV-1 medicines. A proportion of patients diagnosed with HIV-1, however, cannot take the ART for many reasons. An alternative option includes antibody-based treatments that are currently being developed; however it is difficult to predict those that would be most appropriate for these more expensive treatments.

Now published in the Journal of Virology, research at Boston Medical Center (BMC) discovered specific virus characteristics that can help predict the efficacy of HIV-1 treatments using antibody-based treatments.

Led by Manish Sagar, MD, an infectious diseases physician at BMC, HIV-1 virus characteristics were identified to predict treatment efficacy with a specific antibody treatment using sequence-based methods. The identified virus characteristics may be used to determine if a patient is a good or poor candidate for specific antibody-based treatments in the future, reducing time and cost involved in treating the virus.

Antibody treatments bind the HIV-1 envelope protein that protects the virus and helps it avoid the immune system response. These envelope proteins also have extensive DNA sequence variation that provides virus information and whether a treatment would be effective or not. It is difficult to predict if an antibody-based therapy will be effective based on knowing the envelope sequence alone, so sequence information is commonly obtained before patients are started on HIV-1 treatments to confirm that their virus will be susceptible to the prescribed therapies.

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In the study, HIV-1 envelope sequence motifs were identified that predict treatment efficacy with a certain type of antibody treatment.

“These findings will allow physicians to make better-informed decisions on treatment plans for patients with HIV-1, ultimately treating the virus to slow it down earlier, ” says Sagar, also an associate professor of medicine and microbiology at Boston University School of Medicine. “Making this process more efficient will only improve patient care, while reducing the time and money spent on finding the right treatment for these patients.”

Antibody-based therapies that require less frequent doping are effective against drug-resistant variants, and may strengthen humoral responses, essential for defense against bacterial pathogens.

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Determinants of employability of people living with HIV

We knew this all along: People living with HIV may face discrimination in employers’ hiring practices, according to a study that specifically found that medical and socioeconomic factors may hinder their employment.

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A newer study backing what we knew all along: HIV-related discrimination.

People living with HIV may face discrimination in employers’ hiring practices, according to a study published in the American Journal of Industrial Medicine, which specifically found that medical and socioeconomic factors may hinder their employment.

This particular study included 170 people living with HIV in Turkey. It found that younger persons with HIV had a much higher probability of participation in the labor force, as did those who were wealthier and generated a higher income. Also, individuals who were working at the time of diagnosis were more likely to be employed. Illicit drug use, a longer time since diagnosis, and low CD4 T cells counts were negatively associated with employment.

“We can easily control HIV virus with anti-retroviral medication, but it is almost impossible to control socioeconomic factors such as the stigma and the prejudices, which are fueled by ignorance and the lack of awareness campaigns,” said the study’s author Durmu Özdemir, PhD, a professor at Yasar University. “There is a serious role for governments and non-governmental organizations to explain the positive impact of anti-retroviral treatment and the need for a normal life for people living with HIV.”

Earlier, in 2014, the UNAIDS (Joint United Nations Programme on HIV/AIDS) reported that on average, one in eight PLHIV report being denied health services, and one in nine is denied employment because of their HIV-positive status. Also, an average of 6% reported experiencing physical assault because of their HIV status. People living with HIV who are members of key populations also face “double stigma” since they get discriminated not only because of their HIV status, but also because of their sexual orientation and gender identity, drug use or engagement in sex work.

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New HIV strain recorded under same group that caused pandemic

The discovery marks the first time a new subtype of HIV-1 has been identified since 2000. To stress, though: Existing treatments for HIV are effective against variants of the HIV virus, including the new subtype.

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A team of its scientists identified a new subtype of the human immunodeficiency virus (HIV), called HIV-1 Group M, subtype L. This marks the first time a new subtype of “Group M” HIV virus has been identified since guidelines for classifying new strains of HIV were established in 2000.

Group M viruses are responsible for the global pandemic, which can be traced back to the Democratic Republic of Congo (DRC) in Sub-Saharan Africa.

The findings of the study – titled “Complete genome sequence of CG-0018a-01 establishes HIV-1 subtype L” – was published in the Journal of Acquired Immune Deficiency Syndromes (JAIDS).

“In an increasingly connected world, we can no longer think of viruses being contained to one location,” said Carole McArthur, Ph.D., M.D., professor in the departments of oral and craniofacial sciences, University of Missouri — Kansas City, and one of the study’s authors. “This discovery reminds us that to end the HIV pandemic, we must continue to outthink this continuously changing virus and use the latest advancements in technology and resources to monitor its evolution.”

Since the beginning of the global AIDS pandemic, 75 million people have been infected with HIV and 37.9 million people today are living with the virus.

To determine if a virus is in fact a new HIV subtype, three cases must be discovered independently. In this case, the first two samples of this subtype were discovered in DRC in the 1980s and the 1990s. The third, collected in 2001, was difficult to sequence at that time because of the amount of virus in the sample and the existing technology.

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With next-generation sequencing technology now available, researchers can build an entire genome at higher speeds and lower costs. In order to utilize this technology, Abbott scientists had to develop and apply new techniques to help narrow in on the virus portion of the sample to fully sequence and complete the genome.

“Identifying new viruses such as this one is like searching for a needle in a haystack,” said Mary Rodgers, Ph.D., a principal scientist and head of the Global Viral Surveillance Program, Diagnostics, Abbott, and also a co-author of the study. “By advancing our techniques and using next generation sequencing technology, we are pulling the needle out with a magnet. This scientific discovery can help us ensure we are stopping new pandemics in their tracks.”

Now this is worth stressing: Existing treatments for HIV that can suppress viral load so that people living with HIV can no longer transmit it, are effective against variants of the HIV virus, including the new subtype. This means – again to emphasize – that a new strain is not a new public health crisis. With the identification of the strain, though, doctors can now test for it.

Abbott created its Global Viral Surveillance Program 25 years ago to monitor HIV and hepatitis viruses and identify mutations to ensure the company’s diagnostic tests remain up to date. In partnership with blood centers, hospitals and academic institutions around the world, Abbott has collected more than 78,000 samples containing HIV and hepatitis viruses from 45 countries, identified and characterized more than 5,000 strains, and published 125 research papers to date to help the scientific community learn more about these viruses. 

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12% of new HIV cases in Phl in July are people who engaged in transactional sex

In total, in July, there were 1,111 newly confirmed HIV-positive individuals reported to the HIV/AIDS & ART Registry of the Philippines. This was 29% higher compared with the diagnosed cases (859) in the same period last year.

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Twelve percent (134 of 1,111) of the new HIV cases reported to the HIV/AIDS & ART Registry of the Philippines (HARP) in July engaged in transactional sex, highlighting the behavior as a driver in the still-continuing worsening HIV situation in the country.

The percentage of the newly infected who engaged in transactional sex is similar to June’s figures (also 12%, or 123 of 1,006). Even earlier, in May, it was higher at 13% (or 144 of 1,092).

For July, 94% (126) of those who engaged in transactional sex were male and aged from 15 to 58 years old (median: 29 years). Forty-eight percent (61) of the males reported paying for sex only, 37% (46) reported accepting payment for sex only, and 15% (19) engaged in both.

Also, among the eight female cases who engaged in transactional sex, 88% (7) were reported to have accepted payment for sex only; while one female reported paying and accepting payment for sex.

Surprisingly, reporting of transactional sex was included in the HARP only in December 2012. HARP identifies people who engage in transactional sex as those who reported that they either pay for sex, regularly accept payment for sex, or do both.

This is not the only population gravely affected by HIV in the Philippines.

For one, the number of diagnosed HIV infections among females has been increasing. The number of diagnosed (402) females from January to July 2019 tripled, compared to the diagnosed (131) cases in the same period of 2014, five years prior. Ninety-two percent (4,012) of all female cases since 1984 were in the reproductive age group (15-49 years old) at the time of diagnosis.

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As FYI: In the early years of the HIV epidemic in the Philippines (1984-1990), 62% (133 of 216 cases) of the diagnosed were female. But since 1991, the proportion of diagnosed males has been greater than that of females each year. From 1991 to present, males comprised 94% (65,079) of the 69,296 diagnosed cases. Also,from January 2018 to July 2019, 3% (551) of 17,909 diagnosed people are transgender women.

Second, HIV continues to greatly impact young Filipinos.

As per HARP: “The predominant age group among those diagnosed has shifted to 25-34 years old starting 2006 from 35-49 years old in 2001 to 2005.” But “the proportion of HIV positive cases in the 15-24 year age group nearly doubled in the past 10 years, from 17% in 2000 to 2009 to 29% in 2010 to 2019.”

In July, there were 59 newly diagnosed adolescents, 10-19 years old at the time of diagnosis. Further, one case was 10-14 years old, 15 cases were 15-17 years old, and 43 cases were 18-19 years old. All were infected through sexual contact (eight male-female sex, 37 male-male sex, and 14 had sex with both males and females).

There were two diagnosed cases less than 10 years old and both were infected through vertical (nee mother-to-child) transmission.

Also in July, 348 (31%) cases were among youth 15-24 years old; 95% were male. All were infected through sexual contact (34 male-female sex, 233 male-male sex, 81 sex with both males and females).

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Third, 82 Filipinos who worked overseas within the past five years, whether on land or at sea, were diagnosed in July. They comprised 7% of the total newly diagnosed cases for the month. Of these, 90% (74) were male. All were infected through sexual contact (15 male-female sex, 39 male-male sex, and 28 sex with both males and females).

Fourth, in July, 10 pregnant women were diagnosed with HIV. Six cases were from NCR and one case each from Regions 1, 4A, 7 and 11. The age of diagnosis ranged from 16 to 39.

Reporting of pregnancy status at the time of testing was also only added recently, from the year 2011. And since 2011, a total of 333 diagnosed pregnant women were reported. More than half (54%, 180) were 15-24 years old at the time of diagnosis, and 38% (127) were 25-34 years old.

HIV can be managed via taking of antiretroviral medicines. But to date, only approximately half of the total 69,512 Filipinos living with HIV are on ART.

So perhaps not surprisingly, in July2019, there were 55 reported deaths due to any cause among people with HIV. Ninety-eight percent (54) were males. Two (4%) were less than 15 years old at the time of death, six (11%) cases were 15-24 years old, 30 (54%) were 25-34 years old, and 17 (31%) were 35-49 years old. Ninety-two percent of these cases were reported to have acquired the infection through sexual contact.

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Severe anti-LGBT legislations associated with lower testing and awareness of HIV

A meta-analysis involving 44,993 men who have sex with men finds that anti-LGBT legislation is associated with lower HIV testing and awareness.

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A meta-analysis involving 44,993 men who have sex with men finds that anti-LGBT legislation is associated with lower HIV testing and awareness.

This first systematic review to investigate HIV testing, treatment and viral suppression in men who have sex with men in Africa finds that among the most recent studies (conducted after 2011) only half of men have been tested for HIV in the past 12 months. In addition, only a quarter of men living with HIV were on antiretroviral therapy or virally suppressed.

The analysis, published in The Lancet HIV journal, found that testing for HIV was higher where there was more protective and progressive legislation and fewer or no LGBT-related arrests.

Although rates of testing are substantially higher than before 2011, they are not sufficient to achieve the targets set by the UN (to have 90% of people living with HIV aware of their status, 90% of those aware also on antiretroviral therapy, and 90% of these achieving viral suppression by 2020). The findings support previous country-level studies suggesting an association between anti-LGBT legislation and access to testing and treatment.

Globally, men who have sex with men are about 28 times more likely to be living with HIV than are men in the general population, and this is particularly apparent in sub-Saharan Africa where human rights of these men are often violated. Anti-LGBT discrimination creates barriers to implementing effective HIV research, policy and health programs along with disruption of services provided by community and non-governmental organizations.

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Professor Marie-Claude Boily of Imperial College London, UK says: “Nearly one million people living with HIV still die annually because they cannot or do not get tested and engage in treatment. Our results suggest that despite improvements in recent years in Africa, engagement in HIV testing and treatment among men who have sex with men is still low, and additional efforts are urgently needed. With an estimated 67% of men who have sex with men in Africa surveyed after 2011 having ever tested for HIV, we are still a long way off achieving the UNAIDS 90-90-90 targets.”

The review used 75 independent studies conducted between 2004 and 2017 from 28 African countries to estimate HIV testing, status awareness, engagement in care, antiretroviral therapy use, and viral suppression in the men.

Over all studies conducted after 2011, the estimated proportion of participants ever tested for HIV was 67%, which was 1.3 times higher than before 2011, and was highest in southern Africa (80%) and lowest in northern Africa (34 %). In comparison, the proportion of men tested in the last 12 months was 50% in studies after 2011, which was 1.6 times higher than before 2011, and again was highest in southern but lowest in eastern Africa (67% vs 40%).

The proportion of men who have sex with men who are HIV positive and aware of their status was much lower at just 19%, and was particularly low in eastern Africa even after 2011 (9%). Overall, less than 24% of men living with HIV were currently on antiretroviral therapy, and an estimated 25% of men living with HIV were currently virally suppressed. It was not possible to look at changes over time as there was not enough data in the studies on these outcomes.

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Levels of HIV testing ever, in the past 12 months, and HIV status awareness were lower in countries with the most severe anti-LGBT legislation, compared with countries with the least severe legislation. Men were more likely to have ever been tested for HIV in countries with more protective and progressive legislation and no LGBT-related arrests from 2014-17.

The authors note some limitations, including that there were no studies in 26 African countries, including 13 countries where same-sex relations are illegal, so the new findings may not apply to the entire African continent and results may be worse in countries with more severe anti-LGBT legislation. Despite a substantial increase in the number of studies on testing for HIV, treatment and viral suppression, data remains scarce for all outcomes except HIV testing, especially from central and northern Africa. This means the study may underestimate or overestimate engagement, especially for antiretroviral therapy use and viral suppression. The authors note that this reflects the challenges of doing research among key populations that face substantial stigma.

The anti-LGBT legislation index used in the study only includes information about legislation, not how it is implemented so may not have captured the full picture. Because most of the studies included were self-reported and used non-confidential interview methods, underreporting and reporting biases are possible.

In a linked Comment article, Dr Jean Joel Bigna of the Centre Pasteur of Cameroon, Yaoundé, Cameroon, says: “Stannah and colleagues have provided important updates on the current situation regarding the HIV care cascade among men who have sex with men in Africa, and highlight areas where urgent action is needed. Governments in Africa should develop comprehensive programs and holistic interventions to provide care, support, and preventive services for this hard-to-reach stigmatized and discriminated vulnerable population. Community mobilization, health-care worker education to decrease stigma and discrimination and engagement remain crucial to end the HIV/AIDS pandemic both globally and at its epicenter in Africa. Human rights are universal and sexual orientation is no grounds for exclusion.”

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