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The Heartbreaking Instagram Where People Remember Loved Ones Who Died of AIDS

“Looking at the photos, I felt like the whole world was falling down around me. I had an overwhelming feeling of loss and devastation, and had to go to the bathroom so that no one would see me crying.”

All images courtesy of The AIDS Memorial

I grew up watching some of my mom’s closest friends die of AIDS. I would go with her to their funerals, standing there, holding her hand, while she and her friends would cry at the impossibility of losing someone else.

She told me that these men were brave and strong. That they had lived their lives to the fullest all the way to the end.

“They are not perverts or deviants, the only thing wrong with them is they have been forgotten by their country and the people who are supposed to take care of them and love them,” she told me. “I don’t care how sick they are, how the disease eats away at them: they are heroes.”

Recently I was sitting in a café in Berlin, scrolling through the Instagram account of The AIDS Memorial, created as a space for people who have lost loved ones to AIDS to tell the stories of those who are no longer with us. Looking at the photos, I felt like the whole world was falling down around me. I had an overwhelming feeling of loss and devastation, and had to go to the bathroom so that no one would see me crying.

But there was also something beautiful to the stories: love and friendship, family, a refusal to forget. A place to come to remember those who had died not just as victims of a terrible plague, but as humans who had laughed and loved, who were once alive and full of hope.

David Bolt tells the story of his partner, Felix, pictured at the top of this page..

“Here is my Felix in 1972 at Fire Island as Carmen Miranda, second from the left. Felix left New York City shortly after this photograph was taken to live openly and freely in San Francisco where he found acceptance and love beyond measure. This photograph depicts a weekend at Fire Island where Felix and his friends would escape the heat, intolerance, and oppression of NYC in the early 1970s. All the beautiful souls in this photograph are gone now, including my sweet, wonderful, incomparable and unique Felix. I met Felix in 1982 at the San Francisco Gay Freedom Day Parade. I was instantly smitten by his wit, charm, and joy. He mentored me, coached me, dressed me and reinvented me into the man I am today with his love and affection and devotion. We were together from 1983 until last year when Felix lost his over 20 year valiant battle with HIV. These past months have been the toughest days and weeks of my life. I have a deep hole in my heart. Sometimes, I pretend Felix is away and returning so I can feel good temporarily yet then the reality of the loss hits me all over again. I weep and I am confused. Everything seems to be turned upside down. Most of the time I do not know what to do. Felix was my world.”

A young girl with a man in a suit.

Briana Buck tells the story of her Uncle Nick, and how he made her feel like the most special person in the whole world when one day he dropped everything to drive 75 miles to bake cookies with her when she was a child. “No matter what he always made me feel special, made me feel like I was the child he never had,” she writes. “When he died I was devastated. I was glad he moved to Vermont to spend time with all of us in his final days. Though it was hard to watch him wither away at least we could show him we loved him and were nearby.”

A young man sitting on grass.

Steve Sagaser writes about his partner, Sergio Anguiano. The two of them met in 1991 while attending UC Berkeley.

“As his partner, the entire 2 ½ year experience was heart-wrenching and terrifying.” Steve writes. “I had no other friends going through this experience. Sergio was 21 years old in 1993 when he died—in our Berkeley apartment, in my arms.

“It was so painful to watch him fight for his life knowing others felt he somehow deserved to die. The knowledge of that was excruciating. It literally took years of heroic social justice activist movements to push the government to value our lives too—only then did help finally arrive, but not in time to save Sergio.”

It’s easy to forget, in the age of PrEP and TASP (Treatment as Prevention), that just 28 years ago the virus ravaged and destroyed large segments of a number of marginalized communities in the US. The African American and Latino communities, the trans community, low income and homeless people, as well as those suffering from substance abuse and mental health issues, and some of the most beautiful and talented people of the LGBTQ community.


One of my best friends, Ken, has been HIV Positive since 1991. He is one of the “lucky” ones. He never got sick, he survived. But surviving meant he had to watch those he loved die.

A few months ago we were sitting in his house in the Echo Park Hills, the Downtown LA skyline sparkling outside his large picture windows. He was telling me the story of his partner, Mikey. “We knew something was wrong with Mikey, but we were both so scared,” he said. “We were young, we thought we had forever. We had only been together a few years, but I believed, and maybe still do, that I was going to share my whole life with Mikey.”

“Mikey didn’t want to go in for the test but I made him. I told him it would be better to know than not know. It was just a few months later that he died. He got so sick so fast. I always say I am lucky because in those months before he died I got to be there for him, to help take care of him, to love him. It means a lot to me that he knew he wasn’t alone. He wrote this beautiful note for me to read after he died, telling me that I was his one and only true love, in this life and the next. To this day I still feel that love.”

Ken began to cry. He showed me a small shrine he has in his office, with a picture of Mikey. “In those last few moments I got to be there with him, to hold his hand as he died,” he said. “I remember the exact moment when his struggled breathing just stopped, the moment when he went from being alive to being dead. Nothing will ever ache like that again, will it?”

In 1988 I was a student at Sarah Lawrence College, living in an apartment on Court Street in Brooklyn Heights. It was August, and New York was suffering a heat wave. It was too hot to stay inside, so I took the train into the East Village and walked up to Crow Bar. I ordered a beer and flirted with a cute boy with dark curly hair, green eyes, and pale white skin. After a few minutes I followed him into the dark room. We made out, and then, dropping to my knees, I sucked him off.

Outside, we both laughed. We had come to escape the heat, not for sex.

“It’s always this way,” he said to me, his voice had a deep Irish lilt. He told me his name was Aron and he was from Dublin. A student at NYU. “We could go on a proper date,” he said. He was smiling. Every time I think of him I remember that smile: he always seemed to be laughing. Happy.

We met the following night in front of his dorm. The night was hot and humid, our shirts wet with sweat. Aron wanted to get a pizza and take it to the Brooklyn Bridge, to have a picnic.

We sat on the bridge eating pizza and drinking whiskey, the City laid out in sparkling lights like a vision of the future, and we told each other the stories of our lives and who we believed we were.

Aron was going to be a Veterinarian. I was going to be a writer.

We walked across the bridge to the Promenade and made out on one of the benches. We spent the night on the roof of my apartment building, fucking and talking and pretending there were stars in the over-lit New York Sky.

Our second date we met in Central Park. Aron had never been to the Rambles. I had a long history of cruising the park and told him I would be his tour guide. After we walked all the way from the park to the West Village. We ate falafel and Aron told me that for our third date we should go up to Harlem to this soul food restaurant he had heard about.

“Oh yeah? A third date?”

His roommate was out of town so we spent the night in his dorm. In the morning I had to leave early to meet my father.

I called Aron a few times over the next month, but he never answered. Never returned my calls. Months later, a friend we had in common told me Aron had killed himself. A few weeks before his death, he’d found out he had AIDS.

I still think of him. Of who we might have been. Of who he might have become. He had the most beautiful eyes, the most stunning laugh.

I tested positive in 2013. The world had changed. It no longer meant a death sentence. But I was still scared. That moment, when I heard the words being said, that I had tested positive, I felt hopeless, life suddenly took on a new depth, a sudden realization that, even if not from HIV, eventually I would die.

When those feelings of fear hit me, and they still do, I think of men like Uncle Nick, and of Felix, of Sergio and Mikey, and of Aron, of all the men I have known who died from this disease, and I remember: I am lucky. I am surrounded by love. I am healthy. My life, even at 50, even with HIV, is laid out before me full of possibility.

And so I do everything I can to live it as big and full of love as possible. In honor of them. In honor of all those who died.

I am grateful to The AIDS Memorial, to everyone who has told their stories of love and loss, for those who keep the dead alive. They deserve that from us.

They deserve to never be forgotten.

Source: https://www.vice.com/en_us/article/gyen7j/the-heartbreaking-instagram-where-people-remember-loved-ones-who-died-of-aids

Nigeria’s hidden HIV crisis

A patient has blood drawn for a HIV speed test in Benue state, Nigeria. Photo by: Kristian Buus / STARS Foundation / CC BY-NC-ND

OWERRI, Nigeria — The myth about homosexuality in Nigeria goes thus: You are most likely to be gay if you are the youngest child and the only male child in the family. The odds are also increased if you attended a boarding school or Catholic seminary.

John does not belong to any of these groups. He has five siblings — four boys and one girl. He says he always knew he was attracted to men, in a country where homosexuality remains illegal. He is also HIV positive.

Like the 19 other HIV-positive gay men who spoke to Devex in Nigeria’s southeastern city of Owerri, John — whose name has been changed to protect his identity — only feels safe at home, and among those they refer to as fellow “CMs,” or community members. In the outside world, John and the rest of the group regularly suffer discrimination and physical attacks.

 

Though “sodomy” was already outlawed in Nigeria, the government introduced a law in 2014 that made homosexuality a crime punishable by up to 14 years in jail, or even death in parts of northern Nigeria that operate under Sharia law. Nonetheless, John said he knows at least 80 CMs in his city alone, and that there are undoubtedly many more who fly under the radar.

UNAIDS’ 2018 report showed that although gay men represent the smallest “key” target population for HIV services in Nigeria, at a little over 26,000 people, they account for the highest prevalence rate. Almost a quarter of them are thought to be HIV positive, compared with other key populations such as sex workers at 14.4 percent and people who inject drugs at 3.4 percent.

While this data is available, the enforced secrecy around the group means its reliability is limited. In Nigeria, UNAIDS has reported the number of gay men and other men who have sex with men at exactly 26,014 for two years running, which public health experts described as highly unusual. Some believe that HIV rates among this community are much higher than official figures suggest.

“There is a serious HIV crisis among Nigeria’s gay population that we cannot continue to ignore.”

— Onyekachi Onumara, senior officer at the Rural Health Foundation

Despite the criminalization of homosexuality, health professionals in Nigeria are allowed to provide care. Advocates say that many practitioners are not aware of this, however, and also lack training in how to support gay patients or create a safe environment for them at clinics. In practice, this means that many HIV positive gay men do not have access to testing and treatment.

Onyekachi Onumara, who works for an NGO trying to tackle the issue, said that “while the national prevalence for HIV is less than 4 percent, it is as high as 30 percent among the gay population. In a month, I see at least 20 new cases [at the NGO’s specialist clinic] even though they rarely see up to 5 monthly at the major HIV centers across the country. There is a serious HIV crisis among Nigeria’s gay population that we cannot continue to ignore.”

Safe spaces

Onumara is a senior officer at the Owerri-based Rural Health Foundation, an NGO that trains health care providers on working with the gay community in Imo state and helps members gain access to treatment centers. Several similar projects are operated elsewhere in the country.

Part of the problem is that the emphasis on condom use in Nigeria is often around avoiding unintended pregnancy, Onumara explained, leading to a lack of understanding about their role in protecting from sexually transmitted infections. According to UNAIDS data, men who have sex with men are the key population with the lowest proportion of condom users at 51 percent, compared with 98.1 percent among sex workers.

As gay men are usually reluctant to come forward, RHF’s outreach relies on contact tracing — targeting those who may be at risk because of a relationship with an existing patient — and the ability of peer educators to identify fellow CMs.

John learned about his HIV status when a partner invited him to one of the peer sessions, after suspecting his wart-like growths could be caused by the human papillomavirus, a risk factor for HIV. He was offered testing, which came back positive, and has been receiving treatment since.

John and the other men who spoke to Devex emphasized that without the existence of a gay-friendly safe haven, they would never have gone for testing, nor commenced and adhered to the treatment.

RHF — which uses a combination HIV prevention strategy known as Minimum Prevention Package Intervention, advocated by the Nigerian government — has so far reached 500 CMs since 2015. Of those, 287 have been tested for HIV, of whom 115 tested positive, 87 were referred for treatment, and 67 completed referrals. The group says it struggled in its early stages, when CMs who tested positive for HIV refused to go to the hospitals they were referred to for treatment, fearing a hostile environment.

With no secure funding stream, however, it is unclear how long RHF will be able to keep running the program.

Devex contacted Nigeria’s Agency for the Control of Aids to comment on the issues in this story, and was directed to the country’s National HIV and AIDS Strategic Plan 2017-2021. This document promises to promote HIV testing among gay men; foster an enabling environment for gay men to access HIV services; and strengthen interventions targeted at reducing stigma and discrimination. It indicates the government’s support for the integration of gay men into the country’s HIV program.

But advocates say the reality is different, with problems often centering on making HIV clinics and their staff accommodating and welcoming of gay men.

Obinna Akamnonu, program coordinator of the Heart-to-Heart Clinic at Imo Specialists Hospital in Owerri, is one of the very few health professionals in Nigeria who have received training on working with gay community members. He told Devex that health care practitioners can often be the greatest obstacle to the emergence of safe spaces at hospitals.

“I had to restructure everything at my clinic. To make the community members comfortable and not feel they are being judged, I had to cut out some time-wasting protocols. I am the one that has direct conversations with them whenever they come for consultation and treatment,” he said.

One CM receiving treatment told Devex he would not have gone to a clinic that hadn’t received training. “Most people in the society do not really understand us,” he said. “They see us as sinners and devil incarnates … If it is not a desensitized environment, I wouldn’t go there for treatment.”

Onumara and Akamnonu believe the prevalence rate in the community is underestimated, and said that HIV-positive gay men are dying because they cannot access treatment.

“In the last four months, I’ve attended the burial of three community members,” Onumara said.

Need for integrated services

None of the men who spoke to Devex had told their family about their sexuality. Under heavy pressure, many are willing to marry women and have children to avoid suspicion.

For health care professionals, this is further reason why it is essential to integrate their care into the national HIV program. “Some of them are married to women who are not aware of their sexuality and HIV status,” and would have no reason to think they should go for testing themselves, said Onumara.

Akamnonu expressed frustration with the short-term nature of programs targeted at key populations in Nigeria, due to their reliance on foreign funds.

“The projects targeting [men who have sex with men] should be well integrated into existing programs and not be seen as a standalone initiative,” he said.

RHF’s outreach program was supported as a subrecipient of the Global Fund’s New Funding Model for most at-risk populations. The project ran from 2015-2017, but has not been renewed, nor integrated into the country’s national HIV program.

“The project has been suspended. The key population’s access to condoms and lubricants was stopped in January 2018,” Onumara told Devex.

For now, the peer sessions that have helped reach HIV-positive gay men and refer them for treatment are running on the generosity of caregivers at facilities attached to the hospital, but without new funding, they could soon end.

A spokesperson for the Global Fund told Devex that Nigeria’s initial application for renewal of the grant was not approved by its Technical Review Panel, but that the funding request has been resubmitted and is currently awaiting a decision.

Ultimately, Akamnonu would like to see the creation of a one-stop shop for HIV testing and treatment, for all patients, that would avoid unnecessary delays. He called for a government-driven inclusive program, and said it is time for the country’s leaders to come to terms with the burgeoning HIV crisis among the group.

“We cannot keep ignoring the population and denying it exists,” he said. “They are our fathers. They are our uncles. They are our brothers. They are our priests.”

Source: https://www.devex.com/news/nigeria-s-hidden-hiv-crisis-93537

Café Positive, a café in Kolkata run by HIV positive youngsters

Coming from the ‘City of Nawabs’, Lucknow, Priya’s sole motto is to explore life through journeys to …Read More

Café Positive, a café in Kolkata run by HIV positive youngstersPhoto courtesy: Cafe Positive Official FB

Tucked away in a tiny garage at Jodhpur Park bazaar in Kolkata is an extremely positive place called the Café Positive. So what’s so positive or special about the Café Positive? The fact that this café is run by a bunch of HIV Positive youngsters, makes it so special. One of its kind, this is also the first café in Asia to run by a crew of HIV Positive people, which includes both men and women over 18 years.

Challenges faced

Café Positive, a café in Kolkata run by HIV positive youngstersPhoto courtesy: Cafe Positive Official FB

Opened on July 14th, 201, the main challenge faced by Kallol Ghosh (the founder) was finding space for his brainchild café. In several of his interviews, Ghosh mentioned that people were reluctant in lending space to HIV positives but later a kind man allowed the gang to open their café in his garage for the cause. With a little help, the group of 10, managed to open their dream cafe and installed a tiny shelf, a semi-automatic coffee machine along with some chairs and tables.

Cafe’s offerings

Café Positive, a café in Kolkata run by HIV positive youngstersPhoto courtesy: Cafe Positive Official FB

Coffee being an indispensable part of people’s social life is obviously the show stopper here. Their freshly brewed Lavazza coffee and Cha (tea), which is Bengal’s favourite, are absolutely awesome. People bond over coffee, so by serving coffee, these youngsters want to prove that they are also an integral part of the society, and want to get rid of the stigma attached to HIV-AIDS Positives. As per Mr. Ghosh, if people drink and eat food prepared by HIV-positive workers, it would help them understand that HIV positives are just like normal people.

Besides coffee, the menu also includes a range of muffins, cookies and sandwiches, which are baked by the skilled workers. These people, apart from being exceptionally good at baking and preparing food also possess great managing skill. The entire team has taken three months of certificate business management training, which is an added advantage.

Response so far

Café Positive, a café in Kolkata run by HIV positive youngstersPhoto courtesy: Cafe Positive Official FB

Surprisingly, society is appreciating this positive change and the cafe has received tremendous support from all. Some eminent personalities too have visited the cafe to show their support to the HIV positives. The cafe receives minimum of 35 to 40 guests each day, which in itself is a great achievement, and now they plan to expand the cafe so that they can easily seat up to 40 customers.

Author: Priya Srivastava
Source: https://timesofindia.indiatimes.com/travel/eating-out/caf-positive-a-caf-in-kolkata-run-by-hiv-positive-youngsters/as66244516.cms

England is still withholding a drug that prevents HIV

The journey to making the HIV prevention drug, Pre-Exposure Prophylaxis (PrEP) routinely available on the NHS in England has been a fraught one, from blatant homophobia in parts of the media, to being subject to legal proceedings. But this battle is still not over, as capped access to PrEP remains. This cannot continue. Today marks the one-year anniversary since the start of the three-year PrEP Impact Trial in England. Despite the clear need for PrEP to be made fully available to everyone who could benefit from it, the decision was made to cap the trial at 10,000 places in England. From the start, we at Terrence Higgins Trust have been unequivocal in our belief that a capped trial would never ensure that everyone who needed PrEP could access it and the only answer was giving this method of HIV prevention a long-term home on the NHS. Less than 10 months into the three-year trial, our fears were realised, when of the near 9,000 places that had been allocated for gay and bisexual men, several trial sites were having to turn people away due to being completely full. We know PrEP works. In Wales, there have been no new HIV infections among people accessing it as part of the national study. This saw the UK Government include a commitment to extend the trial by 3,000 places as part of the LGBT Action Plan, and NHS England take action to make this a reality. Those additional places have now been distributed, but a number of clinics are either filling up quickly or not providing immediate access to PrEP by placing people on lengthy waiting lists. We now face the crisis situation of the trial being full for gay and bisexual men – likely as soon as January 2019. This means that as things stand, no one in this population – which still accounts for more than 50% of new HIV infections – will be able to access PrEP on the NHS, potentially until the end of the trial in late 2021. While England dithers, the other UK nations have accelerated ahead with rolling out PrEP. Scotland made it available via the NHS in July 2017, and both Wales and Northern Ireland have uncapped access. This means the part of the UK which accounts for the highest rates of HIV infections is withholding a drug that could help to put an end to this epidemic. We know PrEP works. In Wales, there have been no new HIV infections among people accessing it as part of the national study. It’s also been shown that PrEP provides a unique opportunity to engage people, who may have never done so in the past, in sexual health services. This is good for diagnosing and treating potential sexually transmitted infections and also ensures people can make informed choices about their sexual health. We currently have a situation in England whereby our NHS is perpetuating health inequalities by leaving people behind in accessing PrEP. And we currently have a situation where by our NHS is perpetuating geographical inequalities with a postcode lottery in where people can access the drug. This is not acceptable. MORE: HEALTH Girl, 4, pictured critically ill in hospital by mum who hasn’t left her bedside Ketogenic diet may help prevent cognitive decline Cheesy chips pizza is a favourite with customers But it doesn’t have to be like this and the solution is very simple: we need to give PrEP a proper home on the NHS. To get there, two things must happen. The first being an immediate removal of the cap on the trial; there is no reason why this cannot happen and it would remove the artificial scramble that has ensued across clinics. The second must be action by NHS England and local government to agree to provide it on the NHS to all who need it, agree a funding solution and create a system that engages all groups who could benefit from PrEP. The battle to get PrEP into the hands of all people who could benefit from it is not yet won, but Terrence Higgins Trust will continue to keep fighting to end this injustice. Until then, we wish the PrEP trial a very unhappy first birthday. A spokeswoman for NHS England tells Metro.co.uk: ‘While it would be wrong to pre-judge the PrEP Impact trial, it is already expanding with the number of places available increasing this year by 3,000 to 13,000. The NHS will look at evidence from the trial to expand prevention services in the most effective way.’ What is the PrEP Impact trial and how does it work? The PrEP trial drug claims to prevent HIV for people at high risk of catching sexually transmitted diseases. It is a single tablet with two components – tenofovir and emtricitabine. The trial was announced in December 2016, will run over three years and will include 10,000 participants in England. In its latest update from June 2018, the PrEp trial has over 7,000 participants across 139 clinics. PrEP has and will be offered to individuals ‘attending participating genitourinary medicine (GUM) clinics, who meet the trial criteria and consent to participate’. The trial has been initiated to address questions which could determine future implementation of the PrEP drug on a larger scale. The trial will focus on participants at particular high risk of getting HIV, including men who have sex with men, trans men and trans women, HIV-negative partners of individuals diagnosed with HIV (who are not known to be virally suppressed) and…….

 

Read more: https://metro.co.uk/2018/10/13/nhs-england-is-still-withholding-a-drug-that-prevents-hiv-this-scandal-must-end-8033215/?ito=cbshare

Twitter: https://twitter.com/MetroUK | Facebook: https://www.facebook.com/MetroUK/

“Visibility matters”: Reporter Marc Malkin came out as HIV+ to honor his gay uncles

This profile is part of Queerty’s Out For Good series, recognizing those who came out to make a difference. The series will run throughout October in honor of National Coming Out Day on October 11.

Name: Marc Malkin, 49

Bio: Entertainment writer and awards show red carpet fixture. Malkin grew up in New York where he launched his career in entertainment journalism at Premiere. He’s since moved to the front of the camera, becoming a popular personality for E! News. In 2018, he joined the staff of Variety as lifestyle editor. He two Emmy nominations along the way.

Coming Out: Malkin’s never hid his sexuality, publicly sharing stories about his personal life. He wed husband Fabian Quesada in 2014, immediately posting the images. He’s also written tender recollections from his teen years of his two gay uncles who died from AIDS complications. Malkin has also helped other celebrities come out of the closet, including Wentworth Miller. But coming out has many facets, and in June 2018, Malkin surprised by coming out again, this time, as HIV+.

In an Instagram post, Malkin shared anecdotes from his first AIDS LifeCycle ride, talked about being positive himself.

 

“On this beautiful day of LGBTQ pride, I have something to say for the first time in such a public forum,” he wrote. “I am HIV-positive.” Malkin went on to reveal his own battle with crystal meth addiction through the 00’s, and receiving his HIV diagnosis shortly thereafter. He stated that coming out as HIV+ was meant to honor his uncles and to show the world he had no shame in his status.

Making a Difference: Malkin made clear that he came out as HIV+ to help end the stigma that still looms over the disease. He wanted people who know him from his life on the red carpet that he still leads a happy, healthy life, maintains a happy marriage and a successful career. He came out as a former addict for the same reason: that people would follow his example to get help in personal battles against substance abuse and go on to live a fabulous life.

Words of Wisdom, as told to Queerty:

“For me, coming out as HIV+ is about visibility. It is about showing the world that I am not ashamed of my status, that I am a survivor, that I am healthy and I am strong. We are only as sick as our secrets and this secret was killing me—not physically, but emotionally. I lived in fear of people finding out. I lived in fear of people founding out and judging me. Coming out as HIV also coincided with me coming out as being in recovery. I lived in fear of people finding out I was an addict. I lived in fear of people founding out and judging me. My fears about coming out as positive and ask addict in recovery were unfounded. I’ve received nothing but love and support. But more importantly, I’ve heard from others who are positive who have thanked me for having the courage to be out and have told me I’ve inspired them to do the same. Coming out was good for me and I hope good for others.”

Source: https://www.queerty.com/visibility-matters-reporter-marc-malkin-came-hiv-honor-family-20181013

Less than half of prisoners with HIV retained in care 3 years after release

Less than half of people with HIV who are incarcerated are retained in care 3 years after their release, according to results of a study conducted in Connecticut.

“Few prior studies had described long-term retention in HIV care (RIC) or viral suppression (VS) for people incarcerated in prisons or jails and transitioning to communities. In fact, incarceration periods are often excluded from studies of RIC,” Kelsey B. Loeliger, an MD/PhD candidate in the Yale Schools of Medicine and Public Health and colleagues wrote. “This is an important knowledge gap because HIV and incarceration are overlapping epidemics that disproportionately affect people who are already marginalized by homelessness, substance use and psychiatric disorders, and socioeconomic status.”

Loeliger and colleagues merged statewide databases from the Connecticut Department of Correction and Connecticut Department of Public Health for people living with HIV who were released from prisons or jails in Connecticut between Jan. 1, 2007, and Dec. 31, 2011. They examined study participants’ RIC and VS for 3 years after their release.

According to the findings, among 1,094 individuals included in the study, continuous RIC declined over time, with 67.2% retained in care during the first year, 51.3% retaining during the first two years and 42.5% retaining during all 3 years. The study also showed that individuals who were reincarcerated were more likely to be retained in care, with 48% meeting RIC criteria vs. 34% of people who were no reincarcerated. However, they were less likely to have VS, 72% vs. 81%.

This year at CROI, researchers reported that long-acting naltrexone improves HIV care in freed inmates with alcohol or opiate abuse disorders, increasing their likelihood of maintaining VS for months.

According to the current study, sustained RIC and VS after release were associated with older age, having health insurance, being treated for HIV while in prison, receiving case management services during follow-up and early linkage to care in the community following release, Loeliger and colleagues reported. In addition to these factors, they said receiving an increased number of case management visits after release and spending an increased proportion of follow-up time re-incarcerated were correlated with better RIC and VS outcomes.

“Dedicated resources are need to optimize people’s HIV care while they are in prison and to link them to care following release,” the authors concluded. “Although prior studies suggest that prison provides a temporary window of opportunity to reconnect people to care, sustained retention in care and continuity of care ultimately require keeping people in the community longer and avoiding incarceration.” – by Caitlyn Stulpin

Source: https://www.healio.com/infectious-disease/hiv-aids/news/in-the-journals/%7B4a7ea56a-a280-43d4-a207-cb01685f8375%7D/less-than-half-of-prisoners-with-hiv-retained-in-care-3-years-after-release

MUM, ME AND HIV – ANDREW’S STORY

 

Andrew Gamez-Heath and mother dressed smartly

How would your mum react if you were diagnosed with HIV? Or your partner, daughter or brother? A HIV diagnosis can come as a shock, but there is life, relationships and sex after HIV.

Here’s what happened when Andrew Gamez-Heath told his mum Alison.

Andrew on Alison

“When I was diagnosed with HIV I knew one of the hardest people to tell was going to be my mum,” says Andrew, who was diagnosed during National HIV Testing Week in 2014.

“As an adult I never wanted to give my parents any unnecessary worry, yet I was faced with having to tell her I had a virus which at the time, neither of us understood. I knew she would be devastated.

“It was 18 months after receiving my diagnosis that I told her and she reacted exactly the way I expected her to. Total panic!

“Since then, she has also has become a bit of an activist, spreading the message that people living with HIV and on effective treatment can’t pass it on to anyone who will listen her. I couldn’t have asked for a more supportive parent.

“My advice to anyone living with HIV who maybe hasn’t told their family is to wait until you’re ready and you have got your head round your diagnosis. You may not be as lucky as I was and you may not get the reaction you expect.

“You don’t want to be supporting the person you’re telling when you still need support yourself. Remember once you have told someone you cant ‘un-tell’ them, so make sure it’s someone you trust. Wait until you have all the facts and all the answers to the questions you will be asked.”

Andrew Gamez-Heath as a child, with mother

Alison on Andrew

“When Andrew told me of his HIV diagnosis I felt every emotion in the book; terror, shock, anger and confusion about what was going to happen next,” says Alison about her son.

“How long was he going to live? Would I be able to nurse him? Would he be in pain? These were all the things that went through my brain. Since the 1980s, when there was the public education pieces on the television, I hadn’t heard much about the virus.

“In my mind HIV and AIDS were one and the same thing, something you died from!

“Andrew was calm and had obviously chosen his words wisely and very quickly, in a few minutes, told me that this was not the case and that treatment and medication had come a long way in 30 years.

“My advice for any parent finding out that their son or daughter is HIV positive is ‘don’t panic!’ That is easy to say in hindsight. I have learned so much since Andrew’s diagnosis that I will, at any opportunity, help to educate others to understand what the fairly simple treatment can do and by taking the prescribed medication the virus becomes undetectable so that it cannot be passed on to others.

“I am incredibly proud of Andrew who works for a sexual health charity and, on a daily basis, educates children and adults alike about HIV. He has had his diagnosis and knows how terrified he was, I just wish that I had been able to be with him and tell him, like mums do, that it would be all right, and it will.”

The truth about HIV

We now have the evidence to confidently say that people living with HIV and on effective treatment – like Andrew – can’t pass the virus on to anyone else.

The PARTNER study looked at 888 gay and straight couples (and 58,000 sex acts) across many countries where one partner was HIV positive and on effective treatment and one was HIV negative. Results found that where the HIV positive partner had an undetectable viral load, there were no cases of HIV transmission whether they had anal or vaginal sex without a condom.

If your HIV knowledge up-to-date? Find out more about the science behind this game-changing message.

 

Source: https://www.startswithme.org.uk/2018/08/15/mum-me-and-hiv-andrews-story/

Scientists have a new weapon against HIV: your phone

Scientists have a new weapon against HIV: your phone
ADOBE/GLOBE STAFF

IN A FAST-EVOLVING fight against HIV, public-health workers have a powerful new ally: Most Americans at risk of contracting the virus carry powerful smartphones that they check again and again over the course of the day.

In recent years, we’ve seen revolutionary advances in HIV prevention that could help us achieve a sustained decline in new infections and envision an end of the epidemic. Smartphones can help us make the most of those advances.

By the mid-1990s, major breakthroughs in HIV treatment had upended the disease’s image as a “death sentence” and made it possible for those affected to lead long and healthy lives. Yet the number of new cases in many parts of the world has increased or remained stubbornly flat for much of the last three decades. For much of that time, condoms were virtually the only option to stop the spread of HIV through sex, and getting tested required an afternoon at the doctor’s office.

Since then, researchers have developed rapid, inexpensive self-testing options and discovered that some drugs used to treat HIV can also help prevent uninfected people from contracting it, an approach known as “pre-exposure prophylaxis” or PrEP. Studies also showed that treating new cases as soon as possible can prevent people from transmitting the virus, a strategy called “treatment as prevention.”

With more ways to prevent the spread of HIV than ever before, we’ve learned that using many options together works much better than any one strategy alone. Called “combination prevention,” this approach involves offering patients multiple medical and behavioral strategies for reducing their risk based on what is the best fit for them. Yet the success of combination prevention requires matching each person with the right interventions at the right time. It can also require a lot of from patients: periodic HIV testing, steady adherence to medication schedules, and good communication with medical providers.

Smartphones and other Internet-connected devices may hold the key. In 2017, more than three-quarters of American adults owned a smartphone, and that number continues to grow. People use their devices almost continuously, with studies suggesting that our phones are within arm’s reach 90 percent of the time and that we check them more than 2,600 times a day. The widespread adoption of smartphones, along with specialized devices, apps, and sensors, allows us to provide “just-in-time, adaptive interventions” that intervene at critical moments when someone is about to slip up and do something harmful or when they are most receptive to making a positive change.

Successful interventions depend on being able to continually monitor and communicate with users, which has only become widely possible with the advent of smartphones and other personal devices. When your Fitbit buzzes with a reminder to move because you haven’t completed your target number of steps for the hour, that’s a powerful, customized nudge you couldn’t receive without a device — unless you hired a personal trainer to follow you around all day.

The ever-increasing ubiquity and power of these devices provides an unprecedented opportunity to track and interact with patients to encourage healthier choices. Researchers and developers in this area, often called “mobile health” or mHealth, have created apps and devices to help people monitor and modify their exercise and eating habits, quit drinking or smoking, and manage their depression and anxiety.

Mobile health is beginning to transform HIV prevention and care as well, for example, by helping to connect people to self-testing and PrEP. Smartphones are ideally suited for reaching high-risk groups like young, single gay and bisexual men, many of whom frequent dating apps like Grindr, Jack’d, and Scruff. While these apps have often been criticized for facilitating hookups that may expose users to HIV, they could also provide potent opportunities to reach these men and encourage safer choices.

For example, Grindr recently began offering users the option to receive regular testing reminders and information about their nearest testing sites. The app’s ability to instantly share targeted information with millions of daily users far outpaces the reach of even the most prolific public health campaign a decade ago.

Just-in-time mobile health tools can serve as a key piece of the combination prevention strategy by complementing existing approaches and helping reach individuals with the right interventions at the right time. Consider self-administered, home-based HIV tests, which have revolutionized testing by allowing people to learn their status in the privacy and security of their own home. While they offer a powerful way to increase testing rates, they have one major drawback over traditional clinic testing: Users are left to face a highly vulnerable moment alone.

To address this challenge, our team at Brown University’s School of Public Health developed eTest, a system that uses Internet-connected devices to provide users with the support they need after testing themselves. When a user opens the HIV self-test kit, a Bluetooth sensor sends a signal to an app on the user’s phone, prompting a trained counselor to call the user, typically within an hour, to discuss their test results and offer relevant prevention and treatment resources. As one user we interviewed described it, the system “brings in that support structure that’s already in the medical clinic into the home.”

Our latest study found that gay and bisexual men who were given eTest were more likely than those supplied with standard self-testing kits to receive counseling on how to reduce their HIV risk, get prevention supplies like condoms, and obtain referrals for PrEP. Given these promising results, we plan to roll out eTest in Providence, Los Angeles, and Jackson, Miss., later this year, in partnership with local health agencies and nonprofits.

Our team at Brown is exploring other ways mHealth can deliver the right HIV interventions at the right time. For example, patients often naturally reflect on their level of risk when getting tested. We’re studying whether having people play interactive health games while waiting for test results could encourage them to commit to behavior changes that reduce their risk in the future. We’re also using Internet-connected pill bottles to monitor when patients are having trouble adhering to their HIV medications and instantly alert their doctors.

Grindr’s ability to share targeted information with millions of users far outpaces the reach of even the most prolific public health campaign a decade ago.

Some day soon, an approach known as “digital phenotyping” may even allow us to predict risky behaviors — like missing medication doses — in advance, using only data from patients’ normal day-to-day use of their smartphones. Our group is actively exploring whether applying the latest techniques in artificial intelligence to the rich data streams produced by people’s personal devices can help us discover these signals and deliver support before patients fall behind.

Of course, collecting data on sensitive health issues requires gaining people’s trust. Grindr recently came under fire for revealing users’ HIV statuses to two outside companies that were helping optimize its software. Developers of mHealth initiatives must be incredibly vigilant and thoughtful about privacy safeguards and how they store sensitive data.

HIV researchers continue to look for the next biomedical breakthrough for treating HIV. An equally critical task, though, is figuring out how to connect at-risk patients to the right set of existing interventions at the right time. In the years to come, smartphones and other devices will transform public health by allowing us to monitor people’s health continuously and intervene in the moments they need it most.

Tyler Wray is an assistant professor of behavioral and social sciences at the Brown University School of Public Health, where he researches ways technology can be used to improve HIV and STI prevention and care. He is the co-founder of SmashLabs, a nonprofit research group at Brown that develops and tests mobile health technologies.

Source: https://www.bostonglobe.com/ideas/2018/10/13/scientists-have-new-weapon-against-hiv-your-phone/tVvYaKtJQ6Cc7IyPzvVIlJ/story.html

What it’s like to find out you’ve got HIV as a Welsh teenager

Campaigner, now aged 20, says she wants to ensure more young people are informed about the virus and get treatment if they need it

As one of only a very few young people born with HIV in Wales, Mercy Ngulube says she felt isolated and unable to talk about it when she learned she had the virus as a teenager.

Worried about stigma and public ignorance Mercy, now 20, campaigned anonymously with the Children’s HIV Association for two years until winning a Diana Award in spring 2017.

At that point, aged 18, she had moved away from home in Cardiff to university and felt confident enough to go public in a bid to “normalise” the virus that still carries so much stigma.

A year on, Mercy is a fluent, gutsy speaker and campaigner who has spoken about HIV and her experience at international conferences and events across the world, given TEDex talks, taken to twitter to counter ignorance and misinformation, and served as chair of the Children’s HIV Association youth committee.

She goes into schools to speak about HIV for the Children’s HIV Association, has interviewed Prince Harry,Charlize Theron and Eurovision winner Conchita, to raise awareness about the virus, and in July this year addressed the International Aids Conference in Amsterdam.

In between all this the former Cardiff schoolgirl is studying for a degree in English Literature at Leicester University.

Mercy Nugulube with Prince William and Prince Harry receiving her Diana Award in 2017 Photo: The Diana Award

 

Meeting Mercy in Cardiff the day before she returns for her third year at university it is hard to imagine her as someone who found it hard to talk about HIV only a few years ago.

What has happened in the last four years would have seemed unimaginable to the teenager coming to terms with a new diagnosis about a virus she did not know much about.

“I was told I had HIV by my doctor and my parents,” Mercy recalls.

“When you are told, it’s like this is something you can’t talk about. I had to learn to live a double life but in adolescence all you want is to fit in and be part of society.

“It’s hard to do that when you’re trying to manoeuvre a huge secret and I did not have the language or skills to do that.”

“If I told people I had an auto immune disorder no one would be on edge but if I said I had HIV everyone would be …’Oh… goodness’.” Photo : Richard Williams

 

Describing being told she had HIV as “a steep learning curve” she says the guidelines now are to tell children born with HIV when they are around eight years old.

“When I was a bit younger there were only about 20 young people born with HIV growing up in Wales so it was really isolating. Only recently has there been funding for projects for kids in Wales born with HIV.

“Growing up for me there were no support networks. The first other young person with HIV I met when I was 16 in London when I went on a residential with the Children’s HIV Association and they began to run a schools campaign.

“I think schools and teachers don’t know enough about it.

“The general message from society in terms of speaking about HIV is that it’s not spoken about so I did not think I could speak about it in the way I do now.”

Mercy also felt protective about her family: “By speaking about it I would not just be going to expose myself but my whole family. When you say it you can’t take it back.”

It took a prince and an award to convince her of what she knew inside, that she had the voice to campaign publicly.

Meeting Prince Harry in Durban, South Africa, at the International Aids Conference in 2016, Mercy was invited with other members of the Children’s HIV Association to a discussion at Kensington Palace and a year later accepted a Diana Award from him.

Prince Harry had recently had an HIV test on Facebook Live and had spoken publicly about how voices were needed to normalise the virus.

Mercy has interviewed Hollywood star Charlize Theron about her HIV campaigning. Photo: Dennis Van Tine/PA Wire

The Welsh teenager was struck by his words. Since being told she had HIV Mercy had told some close friends but had not gone public on her diagnosis. Now she decided the time was right to talk about her experiences and the virus.

“I had just started university at the time but had not come out publicly (as HIV positive). Prince Harry said it would be great if someone would come and normalise HIV at that award in 2017 so when I got the award I came out. The award is what prompted me to come out.

“ Princess Diana made huge strides in alleviating stigma around HIV and her boys are carrying that on.

“I am very aware I am only one of very few kids in the UK living with HIV and when I have a voice they have a voice.

“It was weight off my shoulders talking about it. I have never known anything different in my life. This is my life and I’m used to it. I think I have always been quite opinionated, so I had the personality to do this.”

Having made the decision to speak, Mercy hit the ground running talking about HIV at home and abroad, travelling to countries as far as Botswana and Lesotho to campaign.

She now wants to focus on ensuring people get healthcare and medication and fears many people, especially young people, don’t know enough about HIV, the risks and the treatment.

“A lot of young people don’t think it’s a problem and think it’s a 1980s thing.

“We have come far since then in terms of science but it’s still about getting young people engaged in healthcare and going for sexual health tests,

“ We don’t generally have people dying from Aids now in this country. A lot of people are living with HIV on medication so there is a bit of complacency.

“What is really important to me is to get people on treatment. That’s what my future campaigning is going to be about. A range of things mean some people are not getting treatment.

“The UN has targets to get people on treatment – only 67% of people across the world with HIV are on treatment. So much of the problem is about people not being able to access treatment.”

Stigma and ignorance continue to be issues that affect getting tested and having treatment, as well as cost, Mercy believes.

Mercy chatting to Prince William at St James Palace, London, after receiving her Diana Award. Photo: The Diana Award

“One of the main things to say is the stigma of HIV means people can forget they are talking about a human being. My advice to other young people with HIV is don’t let people take away your humanity.

“There is not so much stigma now but there is still stigma. One thing I have spoken about with the Duke of Sussex is normalising HIV. HIV is a virus attacking the immune system, but it’s the stuff associated with it that makes it hard – sex, drugs and being gay.

“If I told people I had an auto immune disorder no one would be on edge but if I said I had HIV everyone would be …’Oh… goodness’.”

“For me there’s nothing I can do about that but I have got to a point where I am confident with myself and, in the nicest possible way, it’s not my job to tell people to see my humanity.”

Mercy, who takes daily medication, says she can expect to lead a normal life and intends to do just that.

Like most third year undergraduates she is beginning to think about jobs and possible careers but isn’t sure yet what she wants to do.

She says she will carry on her HIV campaigning but that may have to take a temporary back seat while she concentrates on her third year final exams.

“A lot of people have asked me where I would be without HIV. I don’t think I would have had the life experiences I have and travelled the world,” she says.

All these experiences should make her CV stand out whatever Mercy decides to do.

Author: Abbie Wightwick

Source: https://www.walesonline.co.uk/news/wales-news/what-its-like-find-out-15204092

People Living With HIV Have Higher Risk of First and Second Primary Cancer Incidence

A new study has found that people living with HIV are at an increased risk of both first and second primary cancer incidence.
The association between HIV and an increased risk of cancer is well-documented, with people in the United States having an approximately 50% increased rate of being diagnosed with cancer compared to the general population. Now, new research is pointing to an increased risk for both first and secondary cancer incidence among the patient population.

The increased risk of cancer is due in part to people living with HIV living longer, thanks to advances like antiretroviral therapy. As these patients live longer, with compromised immune systems, they become more susceptible to both AIDS-defining and non-AIDS–defining cancers.

“The combination of older age, extended duration of immunosuppression, longer latency period for oncogenic viruses, and ongoing environmental exposures such as tobacco and alcohol use, puts people living with HIV at heightened risk for malignancies over time,” wrote the researchers of the study.


Compromised immune systems, combined with the fact that cancer survivors are more likely to be diagnosed with a second malignancy, puts people living with HIV at an even greater risk of developing a second primary cancer, according to the study of 22,623 patients diagnosed with HIV between January 1, 1990, and December 21, 2010.

Among these patients, there were 4545 incident primary cancers, accounting for 4144 first primary cancers, 372 second primary cancers, 26 third primary cancers, and 3 fourth or later primary cancers. People living with HIV had higher standardized incidence ratios for 14 first primary cancers, including: Kaposi sarcoma, non-Hodgkin lymphoma, cervical cancer, anal cancer, vulvar cancer, Hodgkin lymphoma, eye and orbit cancer, lip cancer, penile cancer, liver cancer, miscellaneous cancer, testicular cancer, tongue cancer, and lung cancer.

Second primary cancer risk was increased for Kaposi sarcoma, anal cancer, non-Hogkin lymphoma, Hodgkin lymphoma, and liver cancer. The median time between the first and second cancer was 2.1 years. Over time, first and second primary AIDS-defining cancer incidence declined while second primary non-AIDS–defining cancer incidence increased.

For the more common first primary cancers, Kaposi sarcoma was typically followed by non-Hodgkin lymphoma and anal cancer or both. Similarly, non-Hodgkin lymphoma as first primary cancer was typically followed by Kaposi sarcoma and anal cancer. Hodgkin lymphoma was mainly followed by non-Hodgkin lymphoma, Kaposi sarcoma, anal cancer, prostate cancer, and tongue cancer.

“All first and second cancers that we identified in excess were due, at least in part, to oncogenic viruses, which are highly prevalent in people with HIV,” wrote the researchers. “The persistence of these pathogens or the damage caused by them, and in the increased speed of progression of these viruses in people with HIV compared to people without HIV, places people living with HIV at continued increased risk of virus-related cancers.”

Higher risk can also be attributed to lifestyle factors, such as smoking, they added. Cigarette smoking accounted for 19% of all cancers during 2000 and 2015, as well as 94% of lung cancer and 32% of anal cancer.

However, the researchers noted lower second primary cancer incidence for testicular cancer, kidney cancer, and prostate cancer.

Author: Jaime Rosenberg
Source: https://www.ajmc.com/newsroom/people-living-with-hiv-have-higher-risk-of-first-and-second-primary-cancer-incidence
Reference

Hessol N, Whittemore H, Vittinghoff E, et al. Incidence of first and second primary cancers diagnosed among people with HIV, 1985-2013: a population-nased, registry linkage study [published online September 20, 2018]. Lancet HIV. doi: https://doi.org/10.1016/S2352-3018(18)30179-6.