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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

“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.

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.

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

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Kidney transplantation between people with HIV is safe, NIH study finds

Kidney transplantation from deceased donors with HIV to people living with both HIV and end-stage kidney disease is feasible and safe.

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Kidney transplantation from deceased donors with HIV to people living with both HIV and end-stage kidney disease is feasible and safe, investigators supported by the National Institutes of Health have found. Their study demonstrates that the pool of available kidneys for people with HIV can be expanded by including donors with HIV, making more kidneys available for all who are awaiting a transplant.

The new findings build on research from 2019, when scientists from the University of Cape Town and NIH reported that people living with HIV who received kidney transplants from deceased donors with HIV had high overall survival and kidney graft survival after five years.

People living with HIV have a growing prevalence of end-stage kidney disease and are nearly three times more likely to die while on kidney dialysis than people without HIV. Kidney transplantation extends the lives of people with HIV and end-stage kidney disease, but these individuals face a shortage of donors and limited access to donor kidneys.

The HIV Organ Policy Equity (HOPE) Act, passed by the US Congress and signed into law in 2013, allows organ transplants from donors with HIV to recipients with HIV in approved research studies in the US. Experts concurred that kidney transplantation between people with HIV would expand the pool of available organs and save lives. Consequently, investigators sought to explore the safety of this innovative transplantation practice.

People living with HIV have a growing prevalence of end-stage kidney disease and are nearly three times more likely to die while on kidney dialysis than people without HIV. Kidney transplantation extends the lives of people with HIV and end-stage kidney disease, but these individuals face a shortage of donors and limited access to donor kidneys.

The multicenter study was conducted by the HOPE in Action team led by Christine M. Durand, M.D., associate professor of medicine, and Dorry Segev, M.D., professor of surgery at Johns Hopkins University in Baltimore. NIH’s National Institute of Allergy and Infectious Diseases (NIAID) funded the study with additional support from the National Cancer Institute, also part of NIH.

Between March 2016 and July 2019, investigators at 14 clinical research sites enrolled 75 adults with end-stage kidney disease and HIV whose virus was reliably suppressed by anti-HIV therapy. Twenty-five participants received kidney transplants from deceased donors with HIV, and 50 participants received kidney transplants from deceased donors without HIV. The latter group included 22 donors who had false-positive HIV tests, another new organ source that has been an unexpected benefit of the HOPE Act.

All participants survived transplantation at a median follow-up of 1.4 years for recipients of HIV-positive kidneys and 1.8 years for recipients of HIV-negative kidneys. One year after transplantation, overall graft survival was excellent and comparable between recipients of HIV-positive kidneys (91%) and HIV-negative kidneys (92%). In addition, there were no differences in the rates of infections requiring hospitalization, serious adverse events (1.1 per person year) or HIV-related complications, which were rare.

Dr. Durand also is leading the HOPE in Action Multicenter Kidney Study, a large-scale, NIAID-sponsored clinical trial to further study the safety of kidney transplantation between people with HIV.

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Brazilian man is first-ever person ‘cured’ of HIV with medication alone; case still ‘not proven’

A 36-year-old man in Brazil – now called the “São Paulo Patient” – seemingly cleared an HIV infection after receiving an aggressive combination of antiretroviral (ARV) drugs and nicotinamide (vitamin B3). He went off all HIV treatment in March 2019 and has not had the virus return to his blood.

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A 36-year-old man in Brazil – now called the “São Paulo Patient” – seemingly cleared an HIV infection after receiving an aggressive combination of antiretroviral (ARV) drugs and nicotinamide (vitamin B3). He went off all HIV treatment in March 2019 and has not had the virus return to his blood.

Most people who suppress HIV with ARVs and later stop treatment see their viral load race back to high levels within weeks. What’s interesting in the case of the “São Paulo Patient” is he did not experience a rebound, and – better yet – his HIV antibodies also dropped to “extremely low levels”, which hints at the possibility that he may have cleared infected cells in the lymph nodes and gut (some of the “reservoirs” where HIV may be “hiding” even for people with undetectable viral load).

Now this is important: According to Ricardo Diaz of the Federal University of São Paulo, the clinical investigator running the study, he doesn’t know whether the patient is cured.

Discussing the case at a press conference of the pay-to-access International AIDS Conference (IAC) 2020, which is being held virtually because of the Covid-19 pandemic, Diaz said that the “São Paulo Patient” “has very little antigen” (referring to HIV proteins that trigger the production of antibodies and other immune responses). But they have not yet sampled the man’s lymph nodes or gut for the virus since he stopped treatment.

Only two people are known to have been cured of their HIV infections: Timothy Ray Brown and Adam Castillejo. Both received bone marrow transplants as part of a treatment for cancers, with the transplants clearing their infections and giving them new immune systems that resist infection with the virus.

However, bone marrow transplants are expensive, complicated interventions that can have serious side effects, making them an impractical cure for over 38 million people living with HIV.

HIV is difficult to eliminate because the virus weaves its genetic material into human chromosomes, where it can lie dormant and so escape the immune surveillance that typically eliminates foreign invaders. Researchers have come up with various strategies to “flush” the reservoirs of cells that harbor latent HIV infections, but so far none have proved effective.

Diaz and his team wanted to compare different reservoir-clearing strategies in 2015, leading to the recruitment of the “São Paulo Patient” and other individuals who had controlled their HIV infections with ARVs.

For this study, the most aggressive approach was used in the “São Paulo Patient” and four others, which added two ARVs to the three they were already taking, hoping this would rout out any HIV that might have dodged the standard treatment. The study group also received nicotinamide that can (in theory) prod infected cells to “wake up” the latent virus. So when those cells make new HIV, they either self-destruct or are vulnerable to immune attack.

After 48 weeks on this intensified treatment, the five participants returned to their regular three-drug regimen for three years, and then stopped all treatments.

Four participants saw the virus quickly return, but the “São Paulo Patient” has now gone 66 weeks without signs of being infected, with tests that detect viral genetic material not finding HIV in his blood.

A more sensitive test was done, mixing his blood with cells that are susceptible to HIV infection, and it produced no newly infected cells.

There are also numerous unknowns, e.g.:

  1. Whether the man indeed stopped taking his ARVs, which has yet to be confirmed with blood examination/s.
  2. How soon the man started ARVs after becoming infected with HIV.
  3. How nicotinamide would awaken silent infected cells.
  4. And if this canoe done/replicated in controlled environment with multiple participants.

“I’m always trying to be a little bit the devil’s advocate, but in this case, I’m optimistic,” Diaz said. “Maybe this strategy is not good for everybody because it only worked in one out of five here. But maybe it did get rid of virus. I don’t know. I think this is a possibility.”

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Antiretroviral meds at risk of running out due to Covid-19 – World Health Organization

More than a third of the world’s countries are at risk of running out of life-saving AIDS drugs because of disruptions to supply lines and other problems caused by COVID-19. Twenty-four nations already reported critically low ARV supplies.

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Yes, PLHIVs should worry.

Seventy-three countries warned that they are “at risk of stock-outs of antiretroviral (ARV) medicines as a result of the COVID-19 pandemic”. This is according to a new survey from the World Health Organization (WHO), which also found that 24 countries already reported having “either a critically low stock of ARVs or disruptions in the supply of these life-saving medicines.”

While there is still no cure for HIV, ARVs can control the virus and prevent onward sexual transmission to other people.

WHO did not name the affected countries in its survey.

According to Dr. Tedros Adhanom Ghebreyesus, WHO Director-General, this is “deeply concerning.” “Countries and their development partners must do all they can to ensure that people who need HIV treatment continue to access it. We cannot let the COVID-19 pandemic undo the hard-won gains in the global response to this disease.”

About 38 million people worldwide are currently infected with HIV.

As FYI: Even prior to the release of the WHO statement, on July 2, Outrage Magazine already sent an email to the office of Department of Health (DOH) Sec. Francisco Duque III, with the National AIDS and STD Prevention and Control Program (NASPCP) and Philippine National AIDS Council (PNAC) Cc’d.

Four days later – and as of press time – no response/s has/have been received.

Various HIV-related services offered in the Philippines have been stalled – e.g. community-based HIV screening, with HIV service providers lamenting the lack of clear guidelines/protocols on how to do this coming from the DOH.

But DOH itself already admitted the ill effects of Covid-19 to HIV-related services in the Philippines.

In June, a letter signed by Usec. Dr. Myrna Cabotaje from Department of Health (DOH) to Outrage Magazine noted the impact of Covid-19 on HIV program implementation. Specifically: Prevention services were reduced by 20% to 30%; HIV testing services reduced by 20% to 80%; viral load testing reduced by 42%; and ARV refill services reduced by 5%.

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Community-led responses must be formally recognized in responses to HIV and COVID-19

UNAIDS, APN+ and APCASO issue a joint statement to emphasize the key role that the HIV response can play in developing and implementing equitable systems for health, including sustainable HIV and COVID-19 programming.

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In the context of the COVID-19 pandemic, UNAIDS, APN+ and APCASO issue a joint statement to emphasize the key role that the HIV response can play in developing and implementing equitable systems for health, including sustainable HIV and COVID-19 programming.

Vulnerable and marginalized people are often the most affected by COVID-19, physically, economically and socially. They are the least able to protect themselves, often living in crowded conditions without sufficient hygiene facilities or on the street. In the context of lockdowns, women have faced increased rates of gender-based violence. Vulnerable and marginalized people are also the least likely to be able to access social protection measures designed to ensure access to basic food, hygiene and livelihood support.

Winnie Byanyima, UNAIDS Executive Director in her remarks at the UNAIDS Programme Coordinating Board Meeting, held in Geneva, Switzerland, from 23 to 25 June 2020, recalled that the hard-learned lessons of the struggle against AIDS provide an invaluable practical guide as we confront Covid-19. Such lessons are the importance of empowering communities; that human rights do not hinder but enable pandemic response; that pandemic responses must go beyond health interventions, and address economic and social drivers and impacts, including providing social protection; that pandemic responses must tackle inequalities in rights and in access to services.

“The HIV response has demonstrated that where communities are able to fully participate in decision-making and service delivery, and human rights protections are strengthened, HIV outcomes and impacts have improved. UNAIDS will continue to work with regional community networks, to reach the people who are left the furthest behind and to tackle gender inequalities and human rights violations that place people at greater risk of both HIV and COVID-19,” says Eamonn Murphy, UNAIDS Regional Director for Asia and the Pacific.

With the joint statement, UNAIDS, APN+ and APCASO emphasize that community-led responses must be a formally recognized element of any country’s responses to HIV and COVID-19. They also call on governments and donors to ensure sufficient funding and political and legal support to networks of people living with HIV and key populations, community-based health services, and community and civil society service and advocacy organizations.

“Beyond fighting the virus, we are also battling social inequities, injustices, and rights violations that make pandemics like COVID-19, and HIV, disproportionately impact and further marginalise key populations and vulnerable communities. We need strengthened communities and civil society working alongside governments, highlighting community, rights, and gender dimensions of issues, as a legitimate part of country health responses,” says RD Marte, APCASO Executive Director.

Communities are at the heart of any effective and equitable public health response. “A robust and enabled civil society was an essential element of the HIV response. As we face the challenges of COVID-19 in the short and longer term, communities and civil society must be resourced and enabled to play a legitimate role in delivering sustainable, gender-based, rights-based responses,” points out Shiba Phurailatpam, Director of the Asia Pacific Network of People Living with HIV/AIDS (APN+).

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‘Love on Wheels’ launched as community-based approach in delivery of HIV services

With the end of the COVID-19 pandemic still nowhere in sight, said Ico Rodulfo Johnson, who helms Project Red Ribbon, “we took it upon ourselves to develop an ingenious way for HIV services to still be delivered. The fight against HIV despite COVID-19 must continue. The country needs to innovate to continue the years of successes of the HIV programs.”

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With the COVID-19 pandemic continuing to pose a challenge to the HIV programs in the Philippines, Project Red Ribbon – with the Joint United Nations Programme on HIV and AIDS (UNAIDS) – came up with a pilot program, the “Love on Wheels”, that eyes to continue delivering HIV services in the country. 

Via this program, health facilities in local government units (LGUs) will be provided with at least three electric motor bikes to allow HIV service providers to reach PLHIVs (like getting their antiretroviral medicines), those who want to get tested, or those requiring safer sex materials. The pilot is being done in the City of Manila.

With the end of the COVID-19 pandemic still nowhere in sight, said Ico Rodulfo Johnson, who helms Project Red Ribbon, “we took it upon ourselves to develop an ingenious way for HIV services to still be delivered. The fight against HIV despite COVID-19 must continue. The country needs to innovate to continue the years of successes of the HIV programs.”

The move is also much-needed, considering Department of Health’s (DOH) continuing focus on COVID-19 that seem to be relegating other health services, including those related to HIV.

In a June 10 letter sent to Outrage Magazine by the DOH, the impact of Covid-19 on HIV program implementation has been noted. Specifically: Prevention services were reduced by 20% to 30%; HIV testing services reduced by 20% to 80%; viral load testing reduced by 42%; and ARV refill services reduced by 5%.

Over three months since COVID-19 lockdowns were imposed in the Philippines, the only existing protocol from DOH related to HIV only tackles ARV distribution; and service providers continue to lament the absence of clear-cut, B&W policies re testing, as well as link to treatment of those who may test HIV-positive.

“Love on Wheels” will be implemented by social hygiene clinics (SHCs) of LGUs, involving medical practitioners like nurses, case managers and medical technologists, among others. This way, confidentiality is ensured (e.g. when accessing HIV testing, or when PLHIVs get their medicines via “Love on Wheels”).

The longer-term plan is to expand this to other LGUs in Metro Manila by July, and eventually to provinces after July.

For those who may want to avail of the services of the “Love on Wheels” in the City of Manila, coordinate with the Manila Social Hygiene Clinic and Treatment Hub, located at 667 Earnshaw St., Sampaloc, via 5310-1326, 749-8273 or 09455102130.

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Brain cells can harbor and spread HIV to the body

Researchers found that the transplanted HIV-infected astrocytes were able to spread the virus to CD4+ T cells in the brain. These CD4+ T cells then migrated out of the brain and into the rest of the body, spreading the infection to peripheral organs such as the spleen and lymph nodes.

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Researchers have found that astrocytes, a type of brain cell can harbor HIV and then spread the virus to immune cells that traffic out of the brain and into other organs. HIV moved from the brain via this route even when the virus was suppressed by combination antiretroviral therapy (cART), a standard treatment for HIV.

The study, conducted by researchers at Rush University Medical Center in Chicago and published in PLOS Pathogens, was funded by the National Institutes of Health.

“This study demonstrates the critical role of the brain as a reservoir of HIV that is capable of re-infecting the peripheral organs with the virus,” said Jeymohan Joseph, Ph.D., chief of the HIV Neuropathogenesis, Genetics, and Therapeutics Branch at NIH’s National Institute of Mental Health, which co-funded the study. “The findings suggest that in order to eradicate HIV from the body, cure strategies must address the role of the central nervous system.”

HIV attacks the immune system by infecting CD4 positive (CD4+) T cells, a type of white blood cell that is vital to fighting off infection. Without treatment, HIV can destroy CD4+ T cells, reducing the body’s ability to mount an immune response – eventually resulting in AIDS.

cART, which effectively suppresses HIV infections, has helped many people with HIV live longer, healthier lives. But some studies have shown that many patients receiving antiretroviral drugs also show signs of HIV-associated neurocognitive disorders, such as thinking and memory problems. Researchers know that HIV enters the brain within eight days of infection, but less is known about whether HIV-infected brain cells can release virus that can migrate from the brain back into the body to infect other tissues.

The brain contains billions of astrocytes, which perform a variety of tasks — from supporting communication between brain cells to maintaining the blood-brain barrier. To understand whether HIV can move from the brain to peripheral organs, Lena Al-Harthi, Ph.D., and her research team at Rush University Medical Center transplanted HIV-infected or noninfected human astrocytes into the brains of immunodeficient mice.

The researchers found that the transplanted HIV-infected astrocytes were able to spread the virus to CD4+ T cells in the brain. These CD4+ T cells then migrated out of the brain and into the rest of the body, spreading the infection to peripheral organs such as the spleen and lymph nodes. They also found that HIV egress from the brain occurred, albeit at lower levels, when animals were given cART. When cART treatment was interrupted, HIV DNA/RNA became detectable in the spleen — indicating a rebound of the viral infection.

“Our study demonstrates that HIV in the brain is not trapped in the brain — it can and does move back into peripheral organs through leukocyte trafficking,” said Dr. Al-Harthi. “It also shed light on the role of astrocytes in supporting HIV replication in the brain — even under cART therapy.”

This information has significant implications for HIV cure strategies, as such strategies need to be able to effectively target and eliminate reservoirs of HIV replication and reinfection, Dr. Al-Harthi added.

“HIV remains a major global public health concern, affecting 30 to 40 million people across the globe. To help patients, we need to fully understand how HIV affects the brain and other tissue-based reservoirs,” said May Wong, Ph.D., program director for the NeuroAIDS and Infectious Diseases in the Neuroenvironment at the NIH’s National Institute of Neurological Disorders and Stroke, which co-funded the study. “Though additional studies that replicate these findings are needed, this study brings us another step closer towards that understanding.”

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