Tag Archives: Immune Disorders

The Survivors

When they were diagnosed, HIV/AIDS was seen as a death sentence: the Grim Reaper. But medical science eventually found ways to hold AIDS back. Long-term survivors, some now feeling a survivor’s guilt, recall preparing to die – and remember the many who did.

Jay Whitehall was just 18 and mourning the death of a friend in The Peel, a gay pub in Melbourne, on a cold winter’s day in 1991. He had been HIV positive for about two years. He was distraught and thought he was going to die.

AIDS had been ripping through gay communities worldwide since the first reports in 1981 of young, gay American men dying of causes usually associated with the elderly or bone marrow transplant patients – rare cancers, pneumonia, catastrophic bodily failure. Treatments were toxic as hell, and no one was expected to last more than five years after diagnosis.

Whitehall’s head was dipped to the ground in despair when a drag queen he didn’t recognise – and he thought he knew all of them – appeared before him. She was tall – really tall, he says – with blonde hair, draped in a light blue dress which sparkled in the pale light.

The drag queen grabbed Whitehall by his shoulders, forcing him to look at her. She said, “HIV is the best thing that ever happened to me – I’ve lost three inches off my hips, four inches off my waist and I feel f****** fabulous!” She performed a high kick and leaned in to tell the mesmerised teenager: “Don’t ever take HIV seriously or it’ll f****** kill you.”

“It helps keeping a positive outlook and not letting the Grim Reaper get into your head.”
“It was a really good thing for me to hear,” says Whitehall, now 44, who muses if the mysterious drag queen who disappeared so quickly was an angel. He took her advice to heart and his health has been good since – swollen glands occasionally, which he attributes to stress. “It sounds tacky, but it helps keeping a really positive outlook and not letting the Grim Reaper get into your head.”

The outlook for people with HIV improved dramatically in 1996 with new drugs called protease inhibitors, following 15 years of devastation. The treatment helped raise T-cell count – a measure of immune system strength – clear of the range where death was a matter of when, not if. People with HIV began living longer.

“You could see – he was really skinny, he looked really unwell.”
Australian health experts even announced an end to the AIDS epidemic in July. “AIDS as a public health threat is over,” Professor Andrew Grulich, of the UNSW Kirby Institute, told Fairfax Media, adding, “Our treatments are so good that most people recover. You get tested early, you get good treatment and people can live a pretty normal life.”

But a generation of long-term survivors from the pre-1996 days – who never expected to live more than a few years – is now approaching retirement, and they face not just the challenges of ageing, but of ageing with HIV. Many will tackle physical and mental health issues, from decades of drug therapies, which are only just being acknowledged

IN THE DARKEST days of the epidemic when hope was absent, people would just drop out of sight. David Crawford, who thinks he became HIV positive in 1984, managed the AIDS ward at Sydney’s St Vincent’s hospital in the 1990s. He says you didn’t see them become sick. One close friend he knew in the 1980s was studying to be an ambulance officer. Crawford figured that was the reason for months without any contact. Then they met by chance at Redleaf pool at Sydney’s Double Bay.

ore than 30 years of living with HIV: David Crawford.

“He didn’t have to tell me what happened,” says Crawford, now 61, talking in a meeting room at Positive Life NSW, the support group for people with HIV, where he works as treatments officer. A box of tissues sits on a chair from the last counselling session he held here. “You could see – he was really skinny, he looked really unwell. I guess that was obvious in my response, the shock.”

“You werent expected to live. You might as well make the most of the life you had.”
He took his own diagnosis calmly. His mother catastrophised everything, leaving him level-headed. He could have blown his inheritance on a bucket-list holiday – plenty did – but instead studied to be a nurse. A fellow student died of AIDS 12 months into the course.

Crawford still ponders why he knuckled down to a career. “I think it came from my dad,” he says. “He said, ‘Don’t follow the sheep. Do your own thing. Make your decisions and follow them through. Don’t be swayed by anybody else.’”

Jane Costello was given three years to live, 22 years ago.

Jane Costello, the 55-year-old president of Positive Life NSW, knows at least 20 long-term survivors eking out a living on social security after blowing their savings and pensions shortly after diagnosis. “You weren’t expected to live,” says Costello, who tested HIV positive in 1994. “You might as well make the most of the life you had.” She was given three years; her husband, who is still alive, less than a year.

One hospital was nicknamed The Morgue: “Once you went in, you didnt come out.”
Crawford would party at Mardi Gras, have a fantastic time, then return to the ward to discover five patients had died that weekend. He cared for Tim Conigrave, who finished his acclaimed memoir Holding the Man there, and his lover John Caleo before their deaths. “There was a roller-coaster of emotions,” he says.

“People were dropping dead like flies,” recalls Whitehall. One Melbourne hospital was nicknamed “The Morgue”, he says: “Once you went in, you didn’t come out.”

Fear and discrimination of people with HIV were widespread, even in the gay community. “Some people would say ‘we don’t really want you here’,” says David Menadue, a Melbourne writer and activist, who was diagnosed aged 32 in 1984. “That was in a gay bar! They got over that, they worked out you couldn’t catch it casually and oppress your own like that. It was a hairy time.”

Californian Tez Anderson set up grassroots group Let’s Kick ASS, to highlight the plight of long-term survivors, which held its third annual awareness day in June. Chapters are springing up across America, and he tells SBS that he’s received an enquiry from Australia.

He remembers his own diagnosis in 1986. He left the clinic and walked up the street and everything was so electric, the sky bluer than it had ever been, the birds louder and the flowers on the hill such a vivid yellow – a hyper-awareness he now recognises as shock.

“It took a lot longer to get my head around the idea that I might well be an old man with HIV.”
Anderson was given two years to live and he began living, he says, like a dying man. “I was going to be the best dying man in the world.” He bought books on dying and went to classes and tried to accept that as a 26-year-old he would not celebrate his 30th birthday. “It took a lot longer to get my head around the idea that I might well be an old man with HIV,” he says. “A long time. I thought I might have maybe five years. We didn’t know. We were the first ones to have this shit.”

He remembers being at a bus stop one day watching people leaving public transport. “They looked like wounded warriors,” he says. “People were in a daze. So many people you’d see on the street, healthy one day, a little bit more decrepit and sicker and sicker and then you stop seeing them, and then their obituary in the local gay paper. It was page after page after page after page of obituaries.”

It’s hard now to comprehend what a difference the 1996 medications made – Anderson refers to the “Lazarus syndrome – returning from the dead to walk again”. Some were even resistant to the very idea of a future, refusing to take drugs which could keep them alive. “It’s almost like ‘I’ve decided what’s going to happen to me’,” says Menadue. One man told him, “I was planning for an early death.” “That was going to be his release. He thought he’d have nice drugs and float off into the ether and everything would be fine.”

Anderson speaks of being “perplexed by survival” and of “AIDS Survivors Syndrome”, a condition he coined after years of anxiety, depression and suicidal ideation. He was watching a show on Iraq War veterans and post-traumatic stress disorder when he realised that explained how he felt; that living through unrelenting decades of being swamped by death was similar.

“‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”
Melbourne man Daniel Cardone recognised the same pathology when shooting a documentary, about long-term survivors who moved to the Californian desert city of Palm Springs to recuperate, which screened at this year’s Melbourne Queer Film Festival. Desert Migration features voice-overs of loss and trauma over tranquil images of mundane beauty: the purpling mountains on the near horizon, a stop sign at the corner of Sunny Dunes and Dunes, a hummingbird’s delicate sip of nectar. Each testament adds to a tapestry of a generation’s obliteration.

“The most immediate thing I learnt from making this was how much unresolved grief people still carried with them, literally post-traumatic stress disorder,” says Cardone, diagnosed in 1995, who moved to Palm Springs in 2010. “And it was really not being acknowledged. The mental health fallout from the epidemic is unparalleled and untreated. As Doc, one of the men in the film, says, ‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”

Anderson spoke this July about AIDS Survivor Syndrome at an international AIDS conference in South Africa and launched a social media campaign under the hashtag #WhatAIDSSurvivorsNeed. Someone contacted him via Facebook saying he had no idea there was a name for what he was going through, that he wasn’t alone. “He said you just saved my life,” says Anderson, via Skype, blinking back tears. “It was so lovely.”

“A lot of people sold everything and then suddenly they survived.”
He wants an ongoing conversation moving from survival to one of healthy ageing and recognition of survivors. A 2016 study in New York City suggests 26 per cent of people with HIV are long-term survivors, he says. 

JANE COSTELLO SAYS many long-term survivors are suffering and living in poverty. “We’ve got that whole ‘End HIV by 2020’ thing,” she says, referring to a national health campaign aimed at producing no new cases by the end of the decade, “and you go, okay, but it’s not saying much about the people living with HIV. That’s about ending transmission… A lot of people sold everything and then suddenly they survived.”

Survivors can face physical and mental challenges. Menadue has had to change medication 14 times since he began treatment in 1989 as the virus became resistant to them. “They were toxic,” he says, “affected my kidneys and liver. They stripped so much fat off my arms and legs – I never managed to get it back.”

“No one dies of HIV anymore, but HIV plays a role in their deaths.”
Even 1996’s game-changer of triple combination therapy introduced fresh risks, raising rates of heart disease and osteoporosis. (Those who began treatment after 1996 may not develop such chronic conditions as long-term survivors, though Crawford believes there will be some negative impact on long-term health.)

Menadue has four major co-morbidities – medical complications – with his HIV, including diabetes and osteoarthritis. In the last few years he’s had cancer, a knee replacement, a shoulder replacement and an ankle fusion.

“No one dies of HIV any more,” he says, “but HIV plays a role in their deaths.” He adds, “If you have a decent T-cell count, you’re probably not going to die soon unless you get run over by a bus.” But people “are experiencing lots of frailty from 55 up, even a bit earlier in some cases. People really have a body of a person 15 years older.”

“I’m faced with premature ageing now.”
One drug led to Crawford developing peripheral neuropathy, destroying nerves in his feet so he couldn’t walk. They also caused diarrhoea within half an hour of ingestion and pancreatitis. There was a months-long spell of reactive arthritis earlier this year. He has short-term memory problems caused by the virus replicating in his brain.

“Even though the drugs [now] are really effective, we still live with these really low levels of inflammation,” he says. “When you’re dealing with long-term inflammation, the risk for heart disease is higher.” There could be problems with other organs, such as the kidneys and lungs. “I’m faced with premature ageing now, I’m possibly experiencing some things I’d be experiencing at 70 or 75 now because I’ve been diagnosed so long.”

David Crawford says Positive Life’s research shows 45 per cent of all those with HIV are coping well. Another 40 per cent have a few problems – he puts himself in that bracket – and another 15 per cent are “doing it tough”.

David Crawford, David Menadue and medications taken by another person living with HIV.

Associated mental health issues are depression, suicidal ideation, anxiety and substance abuse – the latter an area swamped by the recent explosion in crystal meth use, but which includes alcohol and tobacco. Costello says some people stop taking their medication, an act known as “passive suicide”.

One of the biggest issues for those newly infected with HIV is how – and whether – to disclose their status to friends, family and lovers. Long-term survivors have different challenges, says Menadue: “How are you living with the various chronic conditions that you’ve got? What kind of support do you need? People are concerned about being frail in the future. What aged-care options are there?”

Women face extra challenges, says Costello. Drug trials have mostly been conducted on men, who represent about 90 per cent of those with HIV in the West.

“Women with HIV generally experience menopause earlier.”
“This means they’ve no idea on how [current treatments] affects women’s bodies,” she notes. That doesn’t mean the drugs aren’t achieving – hopefully – their purpose, of diminishing the viral load and increasing the CD4 count, but the long-term effects are unknown.

The unknowns multiply with age. “With menopause they have no idea,” she says. “Women with HIV generally experience menopause earlier. We don’t know how hormone replacement therapy interacts with the drugs.” Women are also more susceptible to problems with bone density as they age.

Costello feels blessed to have lived longer than her initial three-year prognosis. Instead of wondering whether feelings of ill-health might lead to her body’s immune system being overwhelmed – she’s stayed in relatively good health – she now wonders if joint pains in her knees might be the first sign of decline.

There is care for people who prematurely age, though it’s not thought any planning is under way for old people with HIV – An estimated 73,660 people nationwide were living with the condition in 2002, of which, 12%, or 3,640, were over 50 years old.  By 2011, however, this figure had increased to 22%, or 16,550, even rising to as high as 35% in Brighton.

“Young people don’t understand it. They’ve never seen someone die of AIDS.”

Menadue, and others, think the stories of long-term survivors aren’t being told. He says more could be done to encourage the 50-plus cohort to monitor their health. He praises HIV organisations for their support, but adds, “I do get the message sometimes that we don’t want to give too many negative messages about the awful bits of living with HIV because it’ll freak out the young.”

Whitehall has had unsettling encounters with younger gay men over his status. He was told to “shut up you stupid old c*** and die a slow AIDS death” by a 19-year-old he argued with online. “Young people don’t understand it,” he says. “They’ve never seen someone die of AIDS.”

He also recalls a university student in his 20s – “really good looking, a really smart young man” – wanting sex without a condom, so he could become HIV positive. (He told Whitehall, “It’s like having my man living inside me.”) “They have no grasp of what HIV and AIDS is and what it did to people. So many people died.”

Desert Migration closes with an inky night falling over the city. Backlit clouds race across the moon. Day breaks with a great yellow rind over the horizon, and life goes on. “I don’t even think about my survival any more,” says Whitehall. “I’ll probably die around 70 like my dad did.”

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Science won’t stop until it beats AIDS, says HIV pioneer

Francoise Barre-Sinoussi, French virologist and director of the Regulation of Retroviral Infections Division (Unite de Regulation des Infections Retrovirales) at the Institut Pasteur, poses during an interview with Reuters, in Paris, France, October 1, 2015. REUTERS/Philippe Wojazer

Francoise Barre-Sinoussi, French virologist and director of the Regulation of Retroviral Infections Division (Unite de Regulation des Infections Retrovirales) at the Institut Pasteur, poses during an interview with Reuters, in Paris, France, October 1, 2015. REUTERS/Philippe Wojazer

Oct 9 More than 30 years after she identified one of the most pernicious viruses to infect humankind, Francoise Barre Sinoussi, who shared a Nobel prize for discovering HIV, is hanging up her lab coat and retiring.

Story via Reuters
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She’s disappointed not to have been able to claim ultimate victory in the battle against the human immunodeficiency virus (HIV) that causes the killer disease AIDS, but also proud that in three decades, the virus has been beaten into check.

While a cure for AIDS may or may not be found in her lifetime, the 68-year-old says, achieving “remission” – where infected patients control HIV in their bodies and, crucially, can come off treatment for years – is definitely within reach.

“I am personally convinced that remission…is achievable. When? I don’t know. But it is feasible,” she told Reuters at her laboratory at Paris’s Pasteur Institute, where she and her mentor Luc Montagnier discovered HIV in 1983.

“We have ‘proof of concept’. We have…the famous Visconti patients, treated very early on. Now it is more than 10 years since they stopped their treatment and they are still doing very well, most of them.”

Sinoussi is referring to a study group of 14 French patients known as the Visconti cohort, who started on antiretroviral treatment within 10 weeks of being infected and stayed on it for an average of three years. A decade after stopping the drugs, the majority have levels of HIV so low they are undetectable.

These and other isolated cases of remission, or so-called “functional cure”, give hope to the 37 million people worldwide who, due to scientific progress, should now be able to live with, not have their lives cut short by, HIV.

In developed countries at least – and in many poorer ones too – an HIV positive diagnosis is no longer an immediate death sentence, since patients can enjoy long, productive lives in decent health by taking antiretroviral drugs to control the virus.

It’s a long way from the early 1980s, when Sinoussi remembers sick, dying HIV-positive patients coming to the doors of the Pasteur and pleading with scientists there for answers.

“They asked us: ‘What we are going to do to cure us’,” she says. At that time, she says, she knew relatively little about HIV, but what she was sure of was that these patients would never live long enough to see a treatment developed, let alone a cure. “It was very, very hard.”

Yet this interaction with real patients, and with their doctors and later their advocates, gave Sinoussi an important insight into what was needed to make her life in science one with meaning and impact — collaboration.

Working across barriers – be they scientific disciplines, cultural, religious and political divides, international borders or gender distinctions, has been and remains Sinoussi’s driving force.

In her earliest days, feeling disengaged while working on her PhD and itching for action in a real-life laboratory, she hustled her way in to working at the male-dominated Pasteur Institute for free with a virologist researching links between cancers and retroviruses in mice.

While viruses are her thing, she has throughout her career worked with, cajoled and learned from immunologists, cancer specialists, experts in diseases of aging, pharmaceutical companies, AIDS patients, campaigners, and even the pope.

“When you work in HIV, it’s not only working in HIV, it’s working far, far beyond,” she said.

Freshly armed with her Nobel award and fired up about a lack of support for proven methods of preventing HIV’s spread, Sinoussi wrote an open letter to then-Pope Benedict XVI in 2009 criticising him for saying that condoms can promote the spread of AIDS.

In what was widely seen as a modification of his stance in response to such criticism, Benedict said in a book a year later that use of condoms could sometimes be justified in certain limited cases as a way to fight AIDS.

Sinoussi says: “HIV has shown the way to go in the field of science. You can’t be isolated in your laboratory. You need to work with others.”

And this, she adds, is the “all together” spirit with which she advises her successors to continue after she’s gone.

Many will be sad to see her leave, but she has faith that her chosen field will deliver for the people who need it.

“Of course, I would love to have stopped and to see we had a vaccine against HIV and another treatment that could induce remission – but that’s life. I encourage the new generation of scientists today to continue our work.

“Science never stops,” she says. “Just because a scientist stops, the science should not stop.”

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Human Genome Tinkering Could Be Our Best Bet to Beat HIV

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The human immunodeficiency virus (HIV) is a crafty little beast, constantly mutating to mask itself from our body’s defenses, but always entering cells through the same molecular door. The design of that cellular door is governed by our DNA, so why not change the lock by modding our genetic code?

In 2006, a minor medical miracle occurred. HIV-positive leukemia patient Timothy Ray Brown—the second Berlin Patient—received a bone marrow transplant that saved his life in more ways than one. The marrow that he received was from a donor with a unique double mutation to a gene on the 3rd chromosome known as CCR5. This gene codes for the surface protein that the HIV virus uses to gain entry into our white blood cells (specifically, CD4+ T-cells); however the double mutation shuts down these sites and provides a natural immunity to HIV. This mutation is exceptionally rare, only occurring in about one percent of Caucasians and nowhere else. It’s been hypothesized that it’s this same natural immunity that allowed a small portion of Europeans to make it through the Black Plague unscathed.

While that was fantastic news for Brown, who nearly a decade later remains off of his retroviral drug regimen and maintains an undetectable level of the virus in his system, it’s not of much use to the rest of us. With both the mutation prevalence and bone marrow compatibility matches in general being so rare, there was no effective means of using transplants as delivery vectors for this beneficial genetic condition. And it’s worth noting that the very process of becoming HIV-free nearly killed Brown. But that’s where Professor Yuet Kan’s team at UCSF comes in.

Kan figured that if integrating this double mutation wouldn’t work on the macro level—that is, replacing a patient’s bone marrow with that of a naturally HIV-immune person’s—maybe it would at the molecular level, thereby allowing researchers to confer the benefits while cutting out the marrow donation. To that end, he and a team of researchers from the University of San Francisco are employing cutting-edge genetic editing techniques to snip out the beneficial length of DNA coding and integrate it with a patient’s own genome.

The technique they’re using is known as CRISPR (Cas9) genome-editing. CRISPRs, (clustered regularly interspaced short palindromic repeats) are DNA delivery vectors that replace the existing base codes at a specific part of a specific chromosome with new base pair sets. Cas9, on the other hand are the “molecular scissors” that Kan’s team employs to first cut out the offending DNA. It sounds easy, sure—just find the string of DNA you want to replace, then snip it out with Cas9 DNA scissors, and install some new DNA using a CRISPR—however the nuts and bolts of the process are far more technically challenging.

The patient’s own blood cells would be employed as a precursor. Researchers would then have to convert those cells into induced pluripotent stem (iPS) cells by modulating a number of genetic switches, thereby instigating their regression to more basic stem cells. After that, the offending CCR5 gene would need to be knocked out and replaced with the better, double-mutated version before the now fortified blood cells were transfused back into the patient. Not only is there no chance of the body rejecting the new cells (they are the patient’s own after all), the technique also neatly sidesteps the whole embryonic stem cell issue.

While the technique is still in its early stages of development and no human trial dates have yet been set, it holds huge promise. Not just for the 35 million people annually infected by HIV, but also sufferers of sickle cell anemia and cystic fibrosis—two deadly diseases caused by a single protein deformation—could benefit from similar techniques. By figuring out which genes do what on our iPS cells, we could even theoretically grant everyone on Earth immediate immunity to any number of diseases.

Of course, being able to update and augment our genetic code opens up a whole slew of potential concerns, objections, and abuses. Just look at the ire raised over the use of embryonic stem cells in the early 2000s. People were lost their minds because they thought scientific progress was being built on the backs of fetuses. Researchers had to go and invent an entirely new way of making stem cells (the iPS lines) just to get around that one moralized sticking point, so you can bet there will be plenty of chimera, master race, and Island of Dr. Moreaureferences bandied about should we ever begin seriously discussing the prospect of upgrading our genes. And could certainly slow progress in this specific research.

That’s not to say that the hysteria that accompanies seemingly every news cycle these days is completely off base. Like cars, styrofoam, pressure cookers, and thermonuclear bombs, this technology can be used for evil just as easily as it can be for good. And while we’re not nearly as genetically complex as, say, an ear of corn, wrangling the myriad of interactions between our various genes is still an incredibly complex task and one with severe consequences should something go awry—even if we can avoid creating unwanted mutations through stringent testing and development methodology as we do with today’s pharmaceutical development. So why not turn ourselves into the ultimate GMOs? It certainly beats everyone becoming cyborgs.

Article via Gizmodo

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Missed, HIV Testing Week? – Don’t worry we do it all year round :-)

We are pleased publish our advert to promote HIV testing, this advert speaks with 15 languages internationally.

Our message is clear, it is better to know your own HIV status and you can get a HIV test at LASS, and have the result within a minute!

Our team of volunteers have specialist training to provide a free and confidential test, we also have a fantastic support team to provide after-care and further information if required.  We also have established network links so we can refer to more specialist agencies so you can be sure to get expert advice for your needs.

We hope you like our advert and hope that you’ll feel comfortable to contact us if you would like a free and confidential test. (0116 2559995)

HIV Testing Training

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Celia Fisher delivering HIV Training at The Michael Wood Centre

At the moment around 100,000 people in Britain are living with HIV, and it is estimated that as many as one in four of them don’t know they are infected. It’s hoped that making HIV tests much more accessible will encourage many people to take control over their own health.

HIV Testing has been available for just under 30 years, presently it’s available from GU clinics and registered testing centres such as LASS and from April next year, home testing for HIV will become legal in the UK.

To slow down the spread of HIV and help people to access treatment, LASS invests in rapid testing services in community settings. There is particularly low uptake in some African communities, so LASS trains volunteers from these communities to carry out testing and provide information.

They provide testing at a range of events and venues including African football tournaments to reach people who otherwise wouldn’t be tested. We also provides services for people with HIV who maybe coping with other issues like poor mental health.  We also provide healthy living training.

Would you like to become a community HIV tester with LASS? We are running the training sessions for this at LASS on Thursday 26th & Friday 27th September – from 9.30 to 4.30 each day at The Michael Wood Centre.

This course is available to LASS volunteers only.

The course covers theory and practice about HIV transmission, Basic HIV knowledge, treatment and benefits of testing, Pre-test “discussion” and information, Sharing test results, Inclusive practices and consideration of different communities and cultures, Role play scenarios, Procedures to use testing kits and Working with different clients.   Following the training, you will need to complete a written test.

To enrol on the course, please contact us on 0116 2559995 or email Celia or Eric for more information.

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FREE Training: HIV & Culture

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Delivered in collaboration with people from a wide range of communities and cultures in Leicester, we will explore how culture affects perspectives and experiences of HIV.

  • Date & Time: Thursday, 13th December between 13:00-16:30 hrs.
  • Venue: The Michael Wood Centre, 53 Regent Road, Leicester, LE1 6YF.

The session will also look at ways of providing knowledge and empowerment about HIV to people with different cultural needs.”

Spaces are very limited, (only 10 available).  If you would like to attend, please contact us on 0116 2559995 and speak to our team who are happy to help.

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From today, HIV treatment is free for all who need it!

Lord Fowler

In March of this year we shared the the news that Asylum Seekers and other non-British citizens were to be given free HIV treatment after the government indicated it was willing to accept an amendment from Lord Fowler to the health bill.

That removal of charges for undocumented migrants and non-UK citizens accessing HIV treatment and care in England comes into effect today. From now on, HIV treatment will be provided free of charge to all who need it, regardless of citizenship or immigration status.

The move was first announced in February and the relevant legislation passed in June. Health ministers have justified the change on the grounds of public health, pointing to the impact that HIV treatment has on onward transmission.

Although it was initially proposed that free HIV treatment should only be available to people who have been living in the UK for more than six months, this requirement has not been retained in the legislation.

While treatment in HIV clinics will always be free of charge, migrants living with HIV who need hospital treatment for another health condition, such as diabetes, heart disease or cancer, or who require antenatal care, may still be subject to charging regulations.

Moreover, the rules have only changed in England. In Scotland and Wales, although charges for HIV treatment have not been levied or actively pursued in recent years, the legislation still states that HIV treatment may be chargeable. In Northern Ireland, the legislation still states that HIV treatment may be chargeable, and these regulations have sometimes been rigorously enforced.

The National AIDS Trust (NAT) has called for a formal change in the law in Scotland, Wales and Northern Ireland, to ensure that free universal access to HIV treatment is guaranteed across the UK.

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