Tag Archives: hiv

We have the ability to end HIV in our lifetime!

Image by NIAID (CC BY 2.0)

London’s largest sexual health clinic, Dean Street is on track to record a huge drop in new HIV cases for a second successive year. In light of this, Dean Street has set itself a target of zero new infections after  witnessing a two-thirds fall in the number of new diagnoses since 2015.

So what’s happened? – PrEP has happened.  PrEP is a HIV prevention, once a day pill which you take regularly, or semi regular (depending on your circumstances).  For more information on PrEP please visit Prepster or The Terrence Higgins Trust

The reduction in new HIV diagnosis attributed to intensive testing of high-risk gay men, quick access to antiretroviral therapy and trials of PrEP which will be offered free on the NHS to 10,000 people from next month.

Dean Street diagnosed 136 people with HIV between January and July, putting it on course for a total of 233 by the end of the year.  If achieved, this would be the second successive fall in excess of 40 per cent, down from 679 in 2015 and 393 last year, when clinicians first raised the possibility of defeating HIV.

Dean Street’s figures are notable as it is also the largest HIV clinic in Europe and typically accounts for one in nine of all new cases in the UK.

Lead clinician Dr Alan McOwan said the latest figures were “great but not good enough” and told the Standard: “It’s a very exciting time. Everyone is so motivated to make this work. In 2015 we were diagnosing about 60 to 70 people positive a month. It dropped dramatically last year, and it’s still dropping. Over the last few months it’s between 15 to 20 people a month.”

Public Health England figures show that the total number of HIV diagnoses in London has fallen steadily from more than 3,000 in 2006 to 2,603 in 2015. It has risen within the highest-risk group of “men who have sex with men”, who now account for more than half the cases. One in seven gay and bisexual men in the capital has HIV.

Figures published earlier this summer for London’s five busiest clinics, including Dean Street and Mortimer Market, also in Soho, showed a 32 per cent fall in new HIV cases, from 880 to 595, in the year to last September.

Dr McOwan said the initial fall in infections diagnosed at Dean Street since 2015 had been concentrated among “very well-informed, assertive people” who bought PrEP online and followed medical advice.

The clinic’s Plan Zero initiative, unveiled this week, will provide tailored advice online to “harder to reach” gay and bisexual men on how to reduce the risk of contracting HIV, and preventing onward transmission. “Shockingly, there are still groups of people who have very, very little awareness of even the basics of HIV,” Dr McOwan said. Participants are asked to answer five questions about their lifestyle, adapting the answers depending on whether they are HIV positive or negative, have sex with multiple partners, use condoms, or take PrEP.

“We finally have the tools to end HIV,” Dr McOwan said. “Plan Zero brings them together into one package. We will beat HIV if we all act together.”

Dean Street, part of the Chelsea and Westminster Hospital NHS trust, will be among the first London clinics to offer PrEP before it becomes available country-wide by next April.

The drug, previously available to about 1,000 gay men via the Proud clinical trial, cuts the risk of contracting HIV from unprotected sex by about 86 per cent.

NHS England decided to make it available under a £10 million three-year trial after being told by the Court of Appeal last year that funding PrEP fell within the health service’s remit. The trial will be the biggest of its kind in the world.

It is not yet known how Leicester & Leicestershire will be involved in the trial.

The introduction of anti-retroviral therapy two decades ago was credited with transforming HIV from a fatal infection into a chronic manageable condition. However, there were 594 deaths of people with HIV in the UK last year.

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There’s currently an outbreak of Hepatitis A affecting gay and bisexual men.

Hepatitis A outbreak in England under investigation

Public Health England is investigating a hepatitis A outbreak predominantly affecting men who have sex with men. Between July 2016 and 2 April 2017, 266 cases associated with the outbreak had been identified in England. At least 74% of these were among MSM, and 63% of cases were in London. There is evidence that there have been some cases in the wider population linked to the outbreak.

A high proportion of cases likely acquired the infection abroad at the beginning of the outbreak, but transmission now mainly occurs in England. The outbreak comprises three concurrently-circulating genotype Ia strains, previously not seen in England. Hepatitis A outbreaks caused by the same strains are concurrently occurring in 12 European countries and elsewhere in the UK outside of England [1,2].

As part of the outbreak response, PHE together with the British Association for Sexual health and HIV have recommended that MSM with one or more new or casual partner in the last three months are opportunistically vaccinated in GUM clinics at their next appointment. In addition, pop-up vaccination clinics have been set up around gay venues in London. PHE is considering wider vaccination strategies to respond this outbreak, which is occurring in the context of a global shortage of hepatitis A vaccine.

See the PDF version of this report for the epidemiological curve depicting the outbreak.

References:

  1. ECDC (December 2016). Rapid risk assessment: hepatitis A outbreaks in the EU/EEA mostly affecting men who have sex with men.
  2. Beebeejaun K, Degala S, Balogun K, Simms I, Woodhall SC, Heinsbroek E, et al (2017). Outbreak of hepatitis A associated with men who have sex with men (MSM), England, July 2016 to January 2017. Euro. Surveill. 22(5), 2 February.

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National HIV Manifesto & Leicester Halve It Pledge

Join us in challenging local candidates to pledge their support for people living with and affected by hiv. The general election is a crucial opportunity to raise the profile of HIV; please add your voice to our campaign.

We have come a long way since the 1980s. While stigma and discrimination remain, HIV is now a long term condition and individuals are living with HIV into old age. HIV affects individuals of all ages with 95% of people living with HIV of working age. HIV treatment in the UK is excellent, but not everyone living with HIV is doing well. The number of people diagnosed with HIV each year remains high and far too many people are diagnosed late.  Services which help people living with HIV manage their condition are facing continued funding cuts.

We have come so far. We cannot stop now.

WE ARE CALLING ON THE NEXT GOVERNMENT TO:

  1. Commit to tackling the stigma and discrimination faced by people living with HIV.
  2. Fully fund HIV and sexual health services to meet the needs of local communities.
  3. Recognise the importance of prevention to a sustainable health and social care system by increasing investment in public health services.
  4. Equip schools with the resources they need to ensure that high-quality, age-appropriate, lesbian, gay, bisexual and trans (LGBT)-inclusive sex and relationships education is taught to all young people in all schools.
  5. Make PrEP available to all individuals at risk of HIV in the UK.
  6. Develop a fair benefits system that meets the needs of people living with HIV whether in or out of work.
  7. Ensure that the health and social care system is equipped to meet the needs of a population ageing with HIV.

TAKE ACTION NOW

It’s time to pile on the pressure; will your local candidates stand with people affected by HIV? There are some easy ways you can help put HIV on the agenda in this election.  Click here to write to your local candidates, asking them to support our manifesto.

Leicester

Tom Robson holding the Halve It Pledge which Leicester City council and Leicester City MPs signed in 2015.

Late HIV diagnosis in Leicester is 13.8% higher than average in England and Leicester has the 6th highest rate of late diagnosis of HIV in the country.  As a city with these statistics, we are responsible for doing everything we can to ensure these late diagnoses come down and to ensure that people know their HIV status.

In 2015 and as part of the ‘Halve It pledge’, Leicester City Council together with local MPs; Liz Kendall, Jon Ashworth and Keith Vaz united with LASS, Trade and other voluntary sector partners to sign the ‘Halve It pledge’.  The national pledge commits Leicestershire to halve late HIV diagnoses by 2020.

Here you can see, our local MP’s together with our council have actually penned their names to the Halve It Pledge, we hope with your support they will remember to put HIV back on the agenda.

#HIVMANIFESTO

You can Tweet the manifesto to spread the word about our demands – use the hashtag #HIVmanifesto. You can also take a photo of yourself holding our HIV pledge. Download here.

Take it offline: meet with your candidates face-to-face to discuss the points in the manifesto. Go to any local hustings events to do the same, ask questions to see how committed they are to the HIV manifesto. Take a look at this toolkit with details and tips on what questions to ask.

Suggested Tweets

I’ve challenged my local MP candidates to support people living with HIV. Join me by sharing the #HIVmanifesto

HIV is misunderstood and under-funded. Put it back on the agenda this election with the #HIVmanifesto

I pledge to stand with people affected by HIV this general election – do you? #HIVManifesto

I’m calling on the next government to stand with people affected by HIV. #HIVManifesto

Download the full HIV Manifesto

Download the HIV Manifesto pledge board

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Global experts recommend that people with HIV should be vaccinated against meningococcal disease

  • New global recommendation from the world’s leading experts in meningococcal disease
  • Recent evidence shows that people who are HIV positive are at significantly higher risk of meningococcal meningitis
  • In a new paper, experts recommend that countries introduce meningitis vaccination programmes for people living with HIV

The Global Meningococcal Initiative (GMI) – an international group of expert scientists, doctors and public health officials – has recommended that people who are human immunodeficiency virus (HIV)-positive should be vaccinated against meningococcal disease (MD).

This global recommendation has been published in the Journal of Infection.

The recommendation is based on recent studies showing an increased risk of MD in individuals who are HIV positive. Results of surveillance data analysis from 2003–2007 in patients of all ages in South Africa, showed that HIV was associated with a higher incidence of MD and higher rates of death from MD.

Other recent studies, including two from the United States from the 2000s, have found a 13-fold and 10-fold greater risk of MD for those with HIV. Patients in these studies were receiving antiretroviral therapy for HIV and a good standard of healthcare.

Immunogenicity studies have shown that two doses of vaccine to protect against MD are required for people who are HIV positive. Individuals with HIV who have been previously vaccinated with one dose of MenACWY should receive a second dose at the earliest opportunity, and continue to receive boosters at the appropriate interval.

Some countries already have recommendations for vaccination with the MenACWY conjugate vaccine, for example the United States. An important issue with such recommendations is, however, the cost of the conjugate vaccine, particularly in low-/middle-income countries with high rates of HIV.

Vinny Smith, co-author of the paper and Chief Executive of Meningitis Research Foundation (MRF) said, “Vaccinating the groups of people who are at the highest risk of meningitis and septicaemia will help us to defeat meningitis. We welcome the GMI’s recommendation to vaccinate people living with HIV to help save lives. Prevention of meningitis and septicaemia through vaccination is the best way to defeat the disease around the world. It is also vital that high-risk groups are particularly aware of symptoms so they can act quickly and get medical help as soon as meningococcal disease is suspected.”

Chris Head, President of the Confederation of Meningitis Organisations (CoMO) commented, “All our members want to see protection against all forms of meningococcal disease made as widely available as possible, and this is an important recommendation which will help to save lives.”

Another recommendation considered by the GMI related to vaccinating people attending planned mass gathering events. This was considered following MD outbreaks related to the World Scout Jamboree in Japan in 2015 and the World Youth Day Catholic Gathering in Poland in 2016. However, further work is needed to characterise the aspects of mass gatherings that pose significant risks for transmission of MD.

This is a press release from the Meningitis Research Foundation.  For more information on Meningitis, visit the Meningitis Research Foundation or you can visit them on social media (Twitter   |   Facebook   |   YouTube)

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Jonathan Grimshaw: ‘I tested HIV positive in 1984’

Jonathan Grimshaw was one of the first men to be infected by HIV in Britain. Here, he talks about survival and the illness that has become his life’s work

By the beginning of 1987, Jonathan Grimshaw had established himself as the UK’s most visible HIV-positive man. He looked striking: he was 32, bald and he often wore a bow-tie. He spoke eloquently about a terrible disease, something he’d been diagnosed with soon after the tests became available in February 1984. With no specific treatments, his prognosis was not good, but he believed his best chances of survival lay within the realms of activism, honesty and education. So he wasn’t at all surprised one day to be seated on a sofa for an explicit live television programme with Claire Rayner.

Story via The Guardian (2011)

It was National Aids Week, the first of its kind, and all the channels had given up airtime to support the government’s unprecedented public health campaign. Everywhere one looked, there was a nervous health minister explaining that we were all at risk and how best to protect ourselves. In the ad breaks, there were images of icebergs and tombstones and the voice of John Hurt imploring us not to die of ignorance. And as the country sat down to dinner, it was greeted with the sight of an agony aunt with a condom in one hand and something else in the other.

“She had been sent a very peculiarly shaped wooden phallus by a fan,” Grimshaw recalls, “and she was trying to get this condom on to this very fat phallus. First take, she couldn’t get it on. KY all over the place. She had this blouse which she was getting black marks on because of the KY. Second take, she couldn’t get it on. Third take, she finally forced the condom down on this wooden monstrosity.”

Claire Rayner, alas, is no longer with us. And nor are almost all of Jonathan Grimshaw’s friends from that time. But at the age of 56, Grimshaw is still in fairly good health, one of this country’s longest-surviving, HIV-positive men. After a period of retirement, he is once again engaged with HIV work and, as we approach the 30th anniversary of the first Aids case in the UK, he finds himself reflecting with a mixture of sadness and wonderment.

“It’s so horrific looking back. I don’t look back very often. It’s hard to conceive that it was actually all happening – you’d get phonecalls to say, ‘So and so is ill’, and it wasn’t that they were ill – they were dying. And you would see them dying. Over the course of a couple of years, you would see them wasting away, you’d go to see them in hospital and you’d go to their funerals. And it was one after another. I don’t know how we did it. Most of the people I knew, most of my friends, died. I was talking to another friend of mine recently who’s also got HIV, and who’s also one of us long-term survivors, and he said that although we’re well and there are treatments, there isn’t a single day that goes by without you having been affected by it.” Grimshaw laughs, as he often does, as a release. He adds: “That’s all I can say about it really.”

But of course there is more. Grimshaw lives with his long-term partner in an elegant, 18th-century, beamed house in Tunbridge Wells. He says that he first became fully aware of HIV the same way many of us did – by watching a 1983 BBC Horizon programme about the epidemic in New York. He had lived in New York a few years before and not long after his return to London he began to see stories about a mystery illness in the newspaper Capital Gay. “But I didn’t know anyone personally affected by it. It seemed to be in America, remote, and it didn’t seem like anything that was going to affect me very much.”

It became more personal in 1983. “An ex-partner of mine called me up and told me that somebody who we’d both slept with at some time in the past had got this new disease. And the doctor who was treating him had suggested that all of his sexual partners should attend the clinic just to be monitored. At that time, the cause wasn’t known, but it was thought there was a sexual transmission element.”

He attended the St Stephen’s clinic, which became part of the Chelsea and Westminster Hospital. He seemed to be fine, but was asked to come back every three months.

“So I kept going back. Then on one visit later they said they had tested my blood for this new virus which was thought to be the cause of Aids and the test had come back positive. I think I was one of the first people to be tested in the country. You just think, ‘Oh Jesus, I’m going to die. I’ve got this disease, and if I have intimate sex with somebody I can kill them.’ You can’t really take in much more than that. The doctor was saying, ‘Will you be able to cope?’ and I was saying, ‘Of course I’ll be able to cope’, and then I left the clinic reeling.

“I didn’t have a partner at the time. I told my parents and I said I wanted to go home for a few days to see them and talk about things. I was in a pretty bad way emotionally. But they didn’t want me to go home. I had a younger brother who I think at the time was 13 and they just didn’t know if there might be some kind of risk to him from my going home. It was terrible. On one hand, I could understand what they were saying and even sympathise with it. On the other, I was dreadfully upset. It really felt like a rejection. I told a very helpful nurse at the clinic what had happened and he said, ‘Do you want me to talk to them?’

“My parents lived in the north-east, so they came down, and this nurse took them through the risks and how it could be transmitted and not transmitted, and for them being able to hear this with a medical hat on reassured them. So after that I was able to go home.”

Grimshaw learned that the Terrence Higgins Trust was about to set up a support group for people who were infected but evidently healthy. “I made sure I was in it – I really was not coping at all well. Drinking quite a lot and completely not knowing what I was going to do.”

There was no treatment against the virus, and no known prognosis, but there was much prejudice. “Because there wasn’t a scientific explanation,” Grimshaw recalls, “all those very ancient theories about what causes disease came up – the idea that disease is some kind of punishment. Those are very difficult things to dislodge.”

The first support group was only intended to last for six weeks, but Grimshaw recognised a need to extend this and co-founded the organisation Body Positive in 1985. This provided a telephone helpline, counselling and hospital visits and spread out from London to 43 local groups.

It was around this time that Grimshaw became the acceptable public face of HIV. “I suppose I felt at that point that people had to take me as I am. It became obvious to me that the way the stigma was partly going to have to be dealt with was that the public needed to see people – as I thought, fairly normal people – on television talking about it, about how if affected them as a human being. I also felt I had nothing to lose – I was probably going to die. There were a few periods when I was on television a lot and I remember I would be careful not to stand at the edge of the tube platform. There were stories about people with Aids being attacked and things could be quite violent.”

Grimshaw looked after himself as best he could. He joined a gym; he ate well. And then there was his work, the sense of fighting the virus by doing something. “Psychologically, that was hugely important to me. I remember a few people who got very involved in the activism used to say, ‘This is the best thing that has happened to me – I’m doing something with my life now that’s really important and worthwhile, and if HIV hadn’t happened I would never have done anything like this.'” (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.)

Grimshaw’s work expanded from Body Positive to include consultative and educational roles at many Aids organisations. He also sat on the first committee responsible for planning the Conservative government’s public health campaigns, advising ministers on the most effective language to persuade gay men to protect themselves. He remembers fearing a backlash “if suddenly the public was being told what gay men did in bed”.

His counselling work culminated in the establishment in 1989 of the Landmark, a day centre in south London. It was opened by Princess Diana; a year later, Grimshaw was awarded an MBE, the first such honour for someone in the HIV sector. Looking back, he flippantly suggests he may have had “a kind of Aids activist compulsion disorder”. Regarding his public visibility he says: “I may have been a bit overexposed. I was told at one point that people were calling helplines asking if HIV made you lose your hair.” In fact, his baldness is due to alopecia (“like Matt Lucas”).

During this period, his blood was monitored every three months. For more than a decade, his T-helper cells, the standard gauge of a responsive immune system, remained high. Grimshaw was fortunate to be a slow progressor.

Fifteen years ago, things slowly changed. His T-cell count began to decline and he found he was continually exhausted. He retired from the Landmark in the mid-90s (the centre now caters for people with learning disabilities), and moved to Brighton, where he bought himself a flat and tried not to be too pessimistic. “If you looked at the downward slope on the graph it wouldn’t be too many years before it hit bottom and I’d be done for. The advice at the time was, ‘Cash in your pension, have a good time with the years that you’ve got left.’ So that’s what I did. I thought that was it.”

But then the drugs took effect. The new treatments, known as protease inhibitors, worked particularly well when taken in a carefully balanced combination, and Grimshaw has had to modify his particular cocktail a few times to combat resistance. Although bouts of breathlessness require him consciously to conserve his energy, he remains largely well. He is a little hard of hearing, but he attributes this to standing too close to nightclub loudspeakers.

Five years ago, he decided to stop the Aids work completely. But last year he came across a study by the Terrence Higgins Trust into the lives of people over 50 with HIV. “There were echoes of how things used to be and it got me very annoyed again. It’s been found that people with HIV are experiencing diseases of ageing, like heart disease or liver disease or kidney disease 10 to 15 years earlier than the general population. A lot of them are quite likely to be poor, because they’ve cashed in their pensions, they haven’t worked for a long time. And there are still problems even in the NHS of people experiencing stigma and discrimination.” Grimshaw volunteered again to work on strategy.

As of June 2010, there have been 26,262 diagnoses of Aids in the UK and there are about 90,000 people living with HIV. I ask Grimshaw how many people from the original Body Positive support group were still around.

“I think they’re all dead. Four definitely are and the fifth I lost touch with. I think I would have heard if he was still alive.”

I wonder whether he ever asks himself: “Why me?”

“Not really. I don’t think my survival is a result of anything I’ve done or not done. I think it’s just a particular make-up of my immune system. I am extraordinarily lucky.”

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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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Ramadan, Fasting & HIV

Crescent Moon

Image by  Tom Robson

Ramadan is the name of one of the 12 lunar months of the Islamic calendar.  For 29 days of Ramadan, Muslims fast from sunrise until sunset.  Many HIV-positive wish to join their community in observing this important month, can they?

During Ramadan, Muslims practice the maximum self-control by denying their bodies every earthly pleasure during the daylight.  This means that eating food and drinking (including water).

After sunset, a fasting individual may eat and drink.  Many attend Mosques at night to pray and socialise.  Ramadan ends when the next crescent moon is born and celebrated with Eid ul-Fitr [breaking fast feast].

Fasting is a healthy practice for people with good health; the Quran exempted some categories from fasting – the sick, pregnant, breastfeeding mothers and travellers — and the wisdom behind this waiver is to spare hardship or damage. However, in spite of the Quranic waiver to those who are sick, many Muslims insist on fasting even if they have a minor health condition, justified the rewarding experience and of course to be part of the community.  Of course if you decide not to fast, the Quran says that you are obliged to feed someone who is less fortunate than you.

The question is, can someone or should someone who is HIV positive fast for Ramadan?

The best person to help you decide is your HIV doctor.  To help you and your doctor make the decision, you need to take under consideration some general factors, such as: when you were diagnosed, your overall health, your viral load and T-cell count.  Those in the early period of treatment should not fast, because the body is still trying to adjust to HIV and the treatment which you are having.

If you have been on treatment for some time, and your T-cell numbers are good, with undetectable viral load, and an overall good health then you might consider discussing your wish to observe Ramadan with your doctor.  Explain to her/him that you cannot let any substance go down your mouth to your stomach from sunrise to sunset.

Ask your doctor if your medication regimen could be adjusted with no risk, so you can take it before the sunrise and/or after the sunset.  If you are on a one pill regimen it might be easier for you to fast than if you are on a multiple pill one.

Once you get the green light from your doctor, you still need to take extra steps when fasting Ramadan.

For example, try to prepare good supplements to use on a daily basis during the month if you haven’t been doing so; in Ramadan eating less meals a day could seriously decrease your intake of important minerals and vitamins. Drink plenty of water during the night and avoid salty meals that could make you thirsty. Avoid unnecessary exposure to sun or heat to avoid dehydration. Do not overload your body with work and rest well while fasting.

Medical experts appeal to those who fast and ask them to stay from fizzy or carbonated drinks like cola, lemonade & other flavours even at Lftar (fast-breaking time).  A long day of fasting causes dehydration of the kidneys.  Having cold and fizzy drinks can suddenly cause the kidneys to fail.  Instead, use fresh water and fresh juices.

Ramadan is a good opportunity to quit bad habits; remember that smoking is not allowed while fasting, so if you do smoke maybe this is a good time to quit.

Fasting can also have great health benefits if done the proper way.  According to Mayo Clinic, “Regular fasting can decrease your low-density lipoprotein, or ‘bad,’ cholesterol. It’s also thought that fasting may improve the way your body metabolizes sugar. This can reduce your risk of gaining weight and developing diabetes, which are both risk factors for heart disease.”

Remember: the Quran forbids Muslims to commit acts that could even remotely jeopardise your health.  If your doctor advised against fasting, or if you have any concern that fasting might hurt your health, then don’t fast and invest the month in doing all the other good deeds that you can do; you can delay your lunch meal to be able to join your community in the daily fast-breaking ceremony.

We wish you a joyful and happy Ramadan filled with blessings and generosity.  We hope this Ramadan will enable you explore the great benefits of spirituality while fighting against HIV/AIDS or any other hardship.

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