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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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Prayer is good, prayer and medication is better!

Pastor Elizabeth was told that prayer was all she needed to fight HIV, she stopped taking her medication after faith leaders insisted she cease taking anti-HIV and life saving drugs.  She wrestled with the decision and is now an advocate for taking medication.  She says “If you are sick, and someone tells you not to take medication, they are misleading you.  Pastor Elizabeth realises this and wishes to share that HIV is simply an illness which requires medication.

At the beginning of the HIV epidemic in the early eighties, some faith leaders preached that only ‘sinners’ contracted the virus, advising that the only solution for those living with HIV was to pray hard for forgiveness. While many faith leaders have since realised that HIV is simply a virus that can affect anyone, unfortunately some haven’t. In fact, a few have gone even further, telling those in their congregations who are living with HIV to stop taking their Antiretroviral treatment (ARVs) and instead concentrate on praying because that’s the only way they will experience emotional and physical healing.

Whether praying to be healed from HIV is being preached in select churches, or some church-goers living with HIV are misinterpreting what their faith leaders are telling them, a number of HIV positive people have died as a result of stopping their HIV medication. What remains unclear is how many people are being converted to this way of thinking. Is this a big problem warranting a global intervention, or are we making a mountain out of a molehill? I personally don’t know the definitive answers to these questions, but what I can say is that where prayer and HIV healing are concerned, I have witnessed and have heard of some pretty bizarre behaviour among people living with HIV, particularly within African communities in the UK and in some parts of Africa.

It was reported in October 2011 that blind faith in prayer claimed the lives of three people who were HIV positive.  At least three people in London with HIV died after they stopped taking life saving drugs on the advice of their Evangelical Christian pastors.

The women died after attending churches in London where they were encouraged to stop taking the antiretroviral drugs in the belief that God would heal them, their friends and a leading HIV doctor said.

HIV prevention charity African Health Policy Network (AHPN) says a growing number of London churches have been telling people the power of prayer will “cure” their infections.

“This is happening through a number of churches. We’re hearing about more cases of this,” AHPN chief Francis Kaikumba said.

Whether you believe in religion or not, there is absolutely nothing wrong with prayer to help you with HIV, however there is everything wrong with discontinuing medication in favour of prayer.  Take time to consider the different mechanises to combat HIV.  Prayer may help the soul and medication will help the body.  There are a lot of people of all faiths in within research and development who would hope you look after your body too.

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The Reason Why Experimental HIV Vaccines Backfire

"This study shows that if a vaccine induces high levels of activated CD4+ T cells in mucosal tissues, any potential protective effect of the vaccine may be hampered," senior author Guido Silvestri explains.

“This study shows that if a vaccine induces high levels of activated CD4+ T cells in mucosal tissues, any potential protective effect of the vaccine may be hampered,” senior author Guido Silvestri explains.

HIV Vaccines Should Avoid Viral Target Cells, Primate Model Study Suggests
Vaccines designed to protect against HIV can backfire and lead to increased rates of infection. This unfortunate effect has been seen in more than one vaccine clinical trial.Scientists at Yerkes National Primate Research Center, Emory University, have newly published results that support a straightforward explanation for the backfire effect: vaccination may increase the number of immune cells that serve as viral targets. In a nonhuman primate model of HIV transmission, higher levels of viral target cells in gateway mucosal tissues were associated with an increased risk of infection.The findings, published in Proceedings of the National Academy of Sciences , suggest that vaccine researchers, when evaluating potential HIV/AIDS vaccines, may need to steer away from those that activate too many viral target cells in mucosal tissues.

“One of the reasons why it has been so difficult to make an AIDS vaccine is that the virus infects the very cells of the immune system that any vaccine is supposed to induce,” says senior author Guido Silvestri, chief of microbiology and immunology at Yerkes National Primate Research Center.

Silvestri is also a professor of pathology and laboratory medicine at Emory University School of Medicine and a Georgia Research Alliance Eminent Scholar. The first author of the paper is senior research specialist Diane Carnathan, PhD, and colleagues from the Wistar Institute, Inovio Pharmaceuticals and the University of Pennsylvania contributed to the study.

A large part of the HIV/AIDS vaccine effort has been focused on developing vaccines that stimulate antiviral T cells. T cells come in two main categories, defined by the molecules found on their surfaces. CD8 is a marker for “killer” cells, while CD4 is a marker for “helper” cells. CD4+ T cells are known to be primary targets for HIV and SIV (simian immunodeficiency virus) infection, while several studies have proposed that CD8+ T cells could be valuable in controlling infection.

In this study, researchers immunized rhesus macaques with five different combinations of vaccines encoding SIV proteins found on the inside of the virus only. This experimental strategy was designed to examine the effects of cell-mediated immunity, without stimulating the production of neutralizing antibodies, in what scientists refer to as a “reductionist approach”.

The monkeys received an initial immunization followed by two booster shots after 16 and 32 weeks. The monkeys were then exposed to repeated low-dose intrarectal challenge with SIV, once per week, up to 15 times. In general, the immunization regimens did not prevent SIV infection. While all the immunized monkeys had detectable levels of circulating “killer” CD8+ T cells, there was no correlation between these cells and preventing infection.

The most important result, however, was that the monkeys that became infected had higher levels of activated CD4+T cells in rectal biopsies before challenge, Silvestri says.

“This study shows that if a vaccine induces high levels of activated CD4+ T cells in mucosal tissues, any potential protective effect of the vaccine may be hampered,” he explains.

The study emphasizes the unique challenges that HIV poses in terms of vaccine development, and the importance of pursuing vaccine concepts and products that elicit strong antiviral immune responses without increasing the number of CD4+ T cells in the portals of entry for the virus.

The research was supported by the National Institute of Allergy and Infectious diseases (AI080082) and the NIH Director’s Office of Research Infrastructure Programs (Primate centers: P51OD11132).

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The NHS urgently needs to make PrEP available

preptabs

Two European studies of pre-exposure prophylaxis (PrEP), PROUD1 and IPERGAY2, reported early results in October 2014. Both studies showed that PrEP was so effective at preventing HIV transmission that everyone in these studies has now been offered PrEP. The comparison arms, which respectively offered delayed PrEP or a placebo, have been closed.

In light of this news, together with data on continued high rates of new infections3, the NHS urgently needs to make PrEP available.

Although an NHS England process to evaluate PrEP is underway, any decision to provide PrEP will probably not be implemented until early 2017, which is too long to wait. We are calling for earlier access to PrEP. The NHS must speed up its evaluation process and make PrEP available as soon as possible. Furthermore, we call for interim arrangements to be agreed now for provision of PrEP to those at the highest risk of acquiring HIV.

What is PrEP?

PrEP stands for Pre-Exposure Prophylaxis. It involves a person who doesn’t have HIV taking pills regularly to reduce their risk of HIV infection. Several studies show that PrEP works.

PrEP is currently only available in the UK to people enrolled in the PROUD study,4 but has been available in the US since 2012.

Why do we need PrEP?

There are now over 100,000 people living with HIV in the UK. 5 We need to improve HIV prevention.

Tens of thousands of HIV transmissions have been prevented by condom use.6  However many people do not use condoms all of the time and each year there are thousands of new infections. PrEP has the potential to prevent new infections among some of those at greatest risk of acquiring HIV.

Condom use will remain a core strategy in HIV prevention. PrEP gives people who already find it difficult to consistently use condoms an additional way to protect their health.

Due to the high rate of HIV infections, there is a particular need for the NHS to make PrEP available to gay men. However it should be available to all people who are at high risk of acquiring HIV.

How effective is PrEP?

Research suggests that PrEP is as effective as condoms in preventing HIV transmission, as long as the pills are taken regularly, as directed. Evidence from a large international study suggests that gay men who maintained at least four doses a week had 96% fewer infections.7 8 Preliminary results from separate studies of PrEP in the UK9 and France10 both show that PrEP substantially reduces infections among gay men. Full results are expected early in 2015. PrEP has also proven effective for heterosexual couples in which one partner is HIV positive and not on HIV treatment.11

PrEP does not prevent other sexually transmitted infections or pregnancy. It allows someone to protect their own health, irrespective of whether their partner uses a condom. Because it is taken several hours before sex, it does not rely on decision-making at the time of sex.

Why take HIV treatment to avoid taking HIV treatment?

People living with HIV need to take lifelong treatment. PrEP consists of fewer drugs and people only need to take it during periods when they are at risk of HIV. Many people find that their sexual behaviour changes over time, for example when they begin or end a relationship.

Does PrEP have side-effects?

Any medicine can have side-effects, so taking PrEP is a serious decision. The drugs in PrEP have been used as part of HIV treatment for many years. This has shown that they have a low risk of serious side-effects. Most people taking PrEP don’t report side-effects. Some people have stomach problems, headaches and tiredness during the first month but these usually go away. People taking PrEP have regular check-ups at a clinic.

Does PrEP mean people take more risks?

The full results of the PROUD study will help us understand the impact of PrEP on condom use among gay men in the UK. But other studies of PrEP have consistently reported that being on PrEP did not result in people adopting riskier behaviours. 12 13  14 Instead it gives people who already find it difficult to consistently use condoms a way to protect their health.

                                                        

References

  1. http://www.proud.mrc.ac.uk/PDF/PROUD%20Statement%20161014.pdf
  2. http://www.aidsmap.com/SecondEuropeanPrEPstudyclosesplaceboarmearlyduetohigheffectiveness/page/2917367/
  3. Public Health England. HIV in the United Kingdom: 2014 Report. London: Public Health England. November 2014.
  4. For more information, http://www.proud.mrc.ac.uk
  5. Public Health England. HIV in the United Kingdom: 2014 London: Public Health England. November 2014.
  6. Phillips AN et al. Increased HIV Incidence in Men Who Have Sex with Men Despite High Levels of ARTInduced Viral Suppression: Analysis of an Extensively Documented Epidemic. PLoS ONE 8(2): e55312. doi:10.1371/journal.pone.0055312.
  7. Grant RM et al. Preexposure Chemoprophylaxis for HIV Prevention in Men Who Have Sex with Men. New England Journal of Medicine 363:2587-2599, 2010.
  8. Anderson PL et al. Emtricitabinetenofovir concentrations and preexposure prophylaxis efficacy in men who have sex with men. Science Translational Medicine 4: 151ra125, 2012.
  9. http://www.proud.mrc.ac.uk/PDF/PROUD%20Statement%20161014.pdf
  10. http://www.aidsmap.com/SecondEuropeanPrEPstudyclosesplaceboarmearlyduetohigheffectiveness/page/2917367/
  11. Baeten JM et al. Antiretroviral Prophylaxis for HIV Prevention in Heterosexual Men and Women. New England Journal of Medicine 367: 399-410, 2012.
  12. Marcus JL et al. No Evidence of Sexual Risk Compensation in the iPrEx Trial of Daily Oral HIV Preexposure PLoS ONE 8: e81997, 2013.
  13. Mugwanya KK et al. Sexual behaviour of heterosexual men and women receiving antiretroviral preexposure prophylaxis for HIV prevention: a longitudinal analysis. Lancet Infectious Diseases 13: 1021–28, 2013. 14 Grant RM et al. Uptake of preexposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: a cohort study. Lancet Infectious Diseases 14: 820-829, 2014.

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HIV in the UK: 76% diagnosed, 90% on treatment, 90% undetectable

HIV test

UK achieves two out of three UNAIDS targets, but undiagnosed infection remains a major problem

The UK’s annual epidemiological report, released yesterday, shows that the country already provides HIV treatment to 90% of people attending clinical services and that 90% of those on treatment have an undetectable viral load. But the country has a long way to go in ensuring that people with HIV are aware of their HIV status – only 76% of people living with HIV have been diagnosed. The problem is particularly acute in black African communities, as only 62% of African heterosexual men and 69% of African heterosexual women living with HIV have been diagnosed.

The figures can be compared to the ambitious targets announced by UNAIDS (the Joint United Nations Programme on HIV and AIDS) earlier in the year: for 90% of all people living with HIV to know their status, 90% of those to be on treatment and 90% of those to have an undetectable viral load. If these figures could be achieved by 2020, the global AIDS epidemic would be over by 2030, UNAIDS said.

The UK appears to have achieved two out of three of the targets, but has a significant problem due to the high rates of undiagnosed infection. Overall, 61% of all people living with HIV in the UK have an undetectable viral load. This contrasts with the 73% that would be achieved if all three of UNAIDS’ 90/90/90 targets were accomplished.

New diagnoses, overall prevalence

Public Health England reports that 6000 people were newly diagnosed with HIV in the United Kingdom in 2013. The overall figure is lower than that seen a decade ago, due to fewer diagnoses among heterosexual men and women born in high-prevalence African countries. Among gay men, the number of diagnoses is as high as ever, with 3250 cases reported in 2013. An estimated 30% of the gay men diagnosed in 2013 were recently infected with HIV (within six months of their diagnosis).

There are now almost 110,000 people living with HIV in the country, including 26,000 who don’t know they have it. This can be broken down into risk groups:

  • Gay, bisexual and other men who have sex with men (43,500 people; prevalence of 5.9%).
  • Black African heterosexual women (25,100 people; prevalence of 7.1%).
  • Black African heterosexual men (13,600 people; prevalence of 4.1%).
  • Heterosexual women of other ethnicities (10,300 people; prevalence of 0.06%).
  • Heterosexual men of other ethnicities (10,200 people; prevalence of 0.06%).
  • People who inject drugs (2400 people; prevalence of 0.7%).

High rates of undiagnosed infection, especially in black African communities

Overall, 24% of people living with HIV are unaware that they have it. The rates of undiagnosed infection are lowest among gay men (16%) and people who inject drugs (10%).

In relation to black African people, it’s worth noting that in previous epidemiological reports the description of a person as ‘black African’ primarily depended on whether they were born in an African country. In contrast, the new report focuses on a person’s ethnicity, so that someone born in the UK to Nigerian parents is considered in the ‘African’ category. As a result of this and other methodological changes, some of the figures for undiagnosed infection are not directly comparable to previous years’ – and paint a more worrying picture.

In 2013, 31% of black African heterosexual women and 38% of black African heterosexual men who had HIV were unaware of their infection. Rates of undiagnosed infection were somewhat lower among heterosexual people of other ethnicities: 27% in men and 23% in women.

The report also shows that rates of undiagnosed infection are far worse outside London, compared to the capital. Outside London, 41% and 49% of African men and women were undiagnosed. In London, 10% and 13% were undiagnosed. There is some fuzziness to these estimates: the true values could be up to 10% higher or lower than the figures given here. But a clear geographic difference would still be observed. This could reflect stronger community networks and more accessible health services, including targeted prevention, in the capital.

Another way to consider undiagnosed infection is to look at rates of late diagnosis – people diagnosed with a CD4 cell count below 350 cells/mm3. Rates of late diagnosis were highest among heterosexual men (62%) and heterosexual women (51%), with black Africans especially likely to be diagnosed late. The lowest rate of late diagnosis was seen in gay men (31%). Across all groups, older people and non-Londoners were more likely to be diagnosed late.

But progress has been made over the past decade – the overall rate of late diagnosis has gone down from 57 to 42%.

A higher uptake of HIV testing, including more frequent testing, is needed to improve the figures on undiagnosed infection and late diagnosis. The report shows that, at sexual health clinics, 86% of gay male patients take an HIV test, but only 77% of heterosexual men and 67% of heterosexual women do so. Whereas guidelines recommend that all people attending sexual health clinics are offered an HIV test, only one-in-seven clinics test at least 80% of their heterosexual patients. Public Health England recommends that clinics review their policies and training protocols.

But while PHE has been able to collect data on HIV testing in sexual health clinics, none are available for testing in GP surgeries, in other medical settings, or in community settings. A significant improvement in the proportion of people living with HIV who are diagnosed is thought unlikely to occur without improved provision of testing in non-specialist settings, as recommended in guidelines. The report notes that less than one in five of the black-African population attended a sexual health clinic in the previous five years.

“Reductions in undiagnosed infection can be achieved through increasing testing coverage in STI clinics, the introduction and consolidation of HIV testing in a variety of different medical services, in addition to further development of community testing, including self-sampling,” PHE comment.

Quality of care for people living with HIV

Considering the next stages of the ‘treatment cascade’ and the National Health Service’s performance in relation to UNAIDS’ targets, the report shows that 90% of people were linked to care within a month of their diagnosis (98% within three months). Moreover, 95% of those who received care in 2012 were retained in care in 2013. Results did not vary according to age, gender, ethnicity, sexuality or geographical area.

Further, 90% of people in care received antiretroviral therapy (up from 69% in 2004). This includes 92% of those with a CD4 cell count below 350 cells/mm3. Of all people taking treatment, 90% had an undetectable viral load, below 200 cells/ml.

Generally there was equality in treatment outcomes, although younger people were less likely to be taking therapy. Moreover, people in both the youngest (15-24 years) and the oldest (over 50) age groups were less likely to have an undetectable viral load.

Guidelines recommend that clinicians discuss treatment as prevention with patients, and give them the option to start treatment early for this reason. Probably as a result, average CD4 cell counts when starting treatment have risen in recent years. In 2013, 25% began treatment with a CD4 cell count between 350 and 500 cells/mm3, and a further 26% did so above 500 cells/mm3.

Article via NAM

For your full copy of the report, click here

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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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Another Major HIV Breakthrough

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Yesterday, the world was taken by storm when it was announced that a baby, born with HIV had been cured.  On the same day, it was announced a team from The Alfred hospital have uncovered HIV’s genetic hiding place and found a drug able to wake it up so that it can be destroyed.

The Alfred’s director of infectious diseases, Prof Sharon Lewin, said waking up HIV with doses of a highly toxic cancer drug was a huge step in curing a disease that has already claimed an estimated 30 million lives.

“What we thought would happen happened: the virus woke up, and we could measure it,” Prof Lewin said. “That is a big step.

“There are more possibilities of getting rid of it by making it visible to drugs and visible to the immune system (and) that we now know we can do.  Now the big challenge is working out, once it is visible, what are the ways to get rid of that infected cell.”

Traditional antiviral medications have been able to stop the virus infecting cells, giving patients a greater life expectancy.

But the virus remained “sleeping” in their DNA, unable to be found or treated, so patients had to take expensive medication daily to suppress its effects.

“It jumps in, buries itself into the DNA and sits there lurking. At any time, if the cell becomes active, the virus then becomes active,” Prof Lewin said.

“It is like having the embers of a fire sitting there . . . the minute you take away the anti-HIV drugs, the embers relight the fire and the whole thing gets going again.”

But by using cancer drug, Vorinostat, for two weeks, Prof Lewin had been able to turn on sleeping HIV-infected cells so they could be detected.

Researchers at The Alfred were able to bring the virus to notice in 18 of 20 HIV patients in a trial that concluded in January.

Prof Lewin hopes a new generation of drugs able to kick-start the immune system may now be able to kill the virus.

Prof Lewin and her team — which included collaboration with Monash University, the Burnet Institute, the Peter MacCallum Cancer Centre and the National Association of People Living with HIV/AIDS — will soon publish their full results.

For David Menadue, who has lived with HIV for almost 30 years, the results bring a new hope.

“Just having the existence of HIV in your body does do damage to your body every day. It puts pressure on your organs, your heart, your kidney, your liver.

“People with HIV would just love to get rid of this and go back to a normalised life. We are never really going to be able to get on top of the virus in developing countries without some sort of magical cure.”

Original Article via Herald Sun

Channel 4 news interviewed Professor Lewin yesterday, click here to see. (Sorry, we can’t embed this video)

Professor Lewin’s news isn’t new, she spoke about this at the 2012 CROI (Conference on Retroviruses and Opportunistic Infections)  – He she speaks with Matt Sharp about HIV Latency and Eradication using Vorinostat.

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