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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The Truth About HIV

WATCH: Thursday BBC1 at 9pm

HIV has claimed around 35 million lives worldwide. But now, as Dr Chris van Tulleken reveals, cutting-edge science can keep the virus at bay or even prevent infection altogether. As a new preventative treatment called PrEP is rolled out on the NHS in Scotland, and new trials are announced in England and Wales, HIV is under control, in Britain at least, but only when it can be detected and the treatment with antiretroviral drugs (ARVs) can begin.

Chris meets a woman whose husband died without ever knowing he had the condition, by which time he had infected her too. But Chris also finds out how ‘viral loads’ can now be reduced to allow patients to lead healthy lives – and even prevent them infecting anyone else.

Chris meets HRH Prince Harry for an interview at the Mildmay Hospital, an HIV hospital made famous by Diana, Princess of Wales, where Chris also meets a patient whose undetected HIV led to serious brain damage.

Prince Harry visited LASS in March this year, during his visit he took time to reflect on the changes for people living with HIV and unveiled a plaque marking the start of LASS’s 30th year. He was able to look at the history of LASS and viewed the panels that were launched by Princess Diana when she visited LASS in 1991.

HRH Prince Harry unveils a unveiled a plaque marking the start of LASS’s 30th year. With Evernice Tirivanhu, Jenny Hand & David Rowlands

Partner organisations joined LASS in a training session led by Juliet Kisob and Sadiya Mohamed.  They looked at the role of community HIV testing in encouraging people to know their HIV status and to help reduce late diagnosis.  They were joined by Prince Harry for workshops where they used a case study to look at how critical partnerships are to breaking down stigma and to identify new places for LASS to test in our 30th year. In Leicester 59% of patients are diagnosed late, which is 20% higher than the national average.

In the BBC documentary, airing on Thursday evening,  Dr van Tulleken visits a clinic in KwaZulu-Natal, South Africa, where tens of thousands are still dying with seven out of ten of people infected worldwide living in sub-Saharan Africa,

He meets an schoolgirl living with HIV and realises that local attitudes to testing are still leading to unnecessary deaths. But Chris also meets clinicians taking mass testing out to the villages and meets a man whose life was saved as a result.

Back in the UK, talk of a cure may be premature, but Chris finds out more about the controversy around the rollout of PrEP which, when taken daily, can prevent someone becoming infected in the first place.

Why Take a HIV Test?

Some people think taking a HIV testing is scary, but honestly it shouldn’t be. The condition is entirely manageable.  If you test positive, early detection, monitoring and effective treatment means that your life can largely carry on as before.

Incredible medical progress has been made in the last 20 years and HIV treatment is now very effective. If you are diagnosed with HIV before it has damaged your body and you are put on effective treatment, you can expect to live as long as anyone else.

HIV treatment aims to lower the amount of HIV in the body to undetectable levels. Global research, known as the PARTNER study, has found that HIV cannot be passed on when the virus is undetectable. In other words, if someone is on effective HIV treatment, it is extremely unlikely that he or she will pass on HIV to anyone else.

This is a massive breakthrough. It means that if everyone with HIV were on effective treatment, we could finally stop the spread of HIV. Until then, it is essential to use condoms to protect yourself.

There are many ways you can test for HIV, you can visit LASS for a free, confidential rapid HIV test, you can sample your own blood/saliva and send it to a laboratory for the results which are then sent back to you (free) or you may wish to purchase a test which gives you a diagnosis in the comfort in your own home.  More information on HIV testing at LASS, at home, elsewhere in Leicester/shire and testing locations around the UK are available online here: http://www.lass.org.uk/hiv-testing/

 

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How HIV became a matter of international security

Governments around the world were slow to get to grips with HIV/AIDS. But a big change came when they started understanding it not just as a health issue but as a security threat too. Alexandra Ossola investigates.

Richard Holbrooke sat in a blue striped chair in the meeting room of the United Nations Security Council. It was a rainy, unseasonably warm January day in New York City, just ten days into the new millennium. Many people were still relieved that the Y2K millennium bug hadn’t wreaked havoc on computers, as some experts had feared. And yet, during the council’s seven-hour meeting, it was clear that a bigger, real threat was looming.

Doctors had identified HIV/AIDS more than 15 years before, but only by 2000 was its true global impact beginning to become clear. Holbrooke, the US ambassador to the UN, then sitting as president of the Security Council, had pushed for this meeting because he had seen first-hand how AIDS could devastate communities. In 1992, he had visited Cambodia and saw UN peacekeepers who, at the end of the day, would get drunk and visit brothels. Holbrooke was sure this behaviour was spreading HIV locally, and that the peacekeepers would bring the disease back with them to their home countries.

He had seen the impact even more dramatically in 1999, when he and his wife visited Africa. Children whose parents had died of the disease slept in gutters; even AIDS activists were so stigmatised they arrived to meet him in a curtained van. Conversations with leaders in countries like Namibia and South Africa showed Holbrooke they weren’t doing nearly enough to combat the disease. The trip galvanised him. AIDS was spreading, regardless of borders, in a way that threatened the stability of states. So, if national governments weren’t taking action, perhaps the world could.

But Holbrooke was met with resistance. Congressmen criticised him on television; friends and dignitaries warned him privately not to confuse humanitarian issues with national security. How could a disease be an issue of national security, they argued – no disease ever had been. “I was told by everyone, including my own staff, ‘You can’t do this; it’s not done; it’s not in the UN charter,’” Holbrooke said in a 2006 interview with PBS. “And I said, ‘But AIDS is a security issue, because it’s destroying the security, the stability of countries.’”

Luckily, Holbrooke found the Security Council more amenable as he pushed to discuss HIV/AIDS. Only Russia was opposed, which Holbrooke thought was ironic since the prevalence of HIV/AIDS in Russia and its surrounding countries was rising rapidly.

Eventually, Holbrooke prevailed. Russian representatives agreed to sit in on the meeting, but wouldn’t speak or participate. That suited Holbrooke just fine. And on 10 January 2000, representatives from all 15 countries took their blue seats in the Security Council meeting room to hear 40 speakers discuss the threat and impact of HIV/AIDS.

AIDS became the first epidemic in modern history to morph beyond a topic of public health into an issue of national and even international security. Without collaboration between countries, between scientists and military personnel, between industry and government, the disease would have claimed more than the 35 million lives it has to date.

There are other events that could qualify as turning points in the fight. The 2000 conference held in Durban, South Africa, at which Nelson Mandela delivered a heartfelt appeal to the international community. Or the 2002 G8 summit in Alberta, Canada, at which global leaders rolled out a plan to support Africa, in it mentioning their dedication to eradicate HIV/AIDS. Or 1987, when the US Food and Drug Administration announced AZT as the first approved treatment for HIV, due in large part to lobbying from gay activists. Or 1995, when the agency approvedHAART, the drug cocktail that most people with HIV/AIDS take every day to stop the progression of the disease.

But the Security Council meeting was critical. The meeting on that balmy January day marked the first formal discussion of HIV as an issue in which the government and military must get involved to protect a country and its interests. Seven months later, the Security Council passed a resolution calling for more training in AIDS prevention for UN peacekeeping forces and encouraging member states to work together for better prevention and treatment policies.

The rhetoric of national security has shaped the way activists and officials address epidemic diseases today, solidifying partnerships and funding streams. And though there are clear advantages to this large-scale, top-down approach of military involvement, there is much to learn about the best way to stop a pandemic.

By the early 1980s, diseases that ravaged the human population seemed like they might become a thing of the past. Smallpox had been eradicated worldwide by 1980; vaccination campaigns during the 1960s and 70s meant that diseases like polio, mumps and measles affected far fewer people. “People were talking about conquering infectious disease once and for all,” says Joshua Michaud, the associate director of global health policy at the Kaiser Family Foundation. “Nobel Prize-winning biologists were saying that we could see the end of infectious disease in our lifetime, and there were reasons to believe that.”

But when AIDS was discovered in 1981, that illusion was shattered. “We had a lot of magic bullets, we had technical fixes to everything. Then HIV happened,” Michaud says.

HIV/AIDS made for a scary assailant. It surfaced mostly among gay people in San Francisco and New York, a death sentence that catalysed activism among the gay community. This activism became critical in helping people gain access to experimental treatment. HIV became highly stigmatised, a “moral” disease, a plague of philanderers and drug addicts.

The disease hits hardest among adults of reproductive age who are otherwise healthy. It’s a threat that respects no border, as George Tenet, then director of the CIA, noted in 2003. And though the effects of AIDS can feel overwhelming when concentrated within communities, they are even more disastrous when taken at a macro scale.

“AIDS is a long-wave event,” says Simon Rushton, a lecturer in politics at the University of Sheffield. “It’s cross-generational. The impacts on societies are long-term, and they accumulate over time.”

More people would die from AIDS than from any other disease outbreak in human history, including the global influenza pandemic of 1918–19 and the bubonic plague in the 1300s, wrote Peter W Singer, then a postdoctoral fellow at the Brookings Institution, in a 2002 essay. If the disease continued to spread at the same rate in places like South Africa and Botswana – where 20 per cent and 38.5 per cent of the population respectively was infected in the year 2000 – life expectancies would plummet by more than 20 years and child mortality would triple within a decade, Singer said.

Intelligence experts estimated that AIDS would wipe out a quarter of all adults in Sub-Saharan Africa.

“[They] were making a logical case that this was going to keep getting worse and worse, that it will threaten viability of most infected states,” Rushton says. Researchers were struggling to understand the epidemic. “There was a fear, perhaps a well-grounded fear.”

Effects like that would put the political stability of these countries at risk, argued innumerable reports and assessments.

The disease would wipe out government officials and educated, trained professionals that make up the backbone of a society, leaving elderly people to care for orphaned children, a process the experts called “hollowing out”. Militaries, which have higher infection rates than civilian populations (in theory because as young, virile men move around, they engage in sexually risky behaviours, swapping diseases with locals and bringing them to the next deployment), would crumble. Destabilised states leave room for extremist groups to take hold, powered by armies of child soldiers under the command of some of the surviving adults.

This worried American intelligence officials. The US would be called upon to provide costly aid to failing states, according to a declassified CIA report from 1987. The Soviet Union would threaten the US’s strategic positioning in Africa – a key concern during the Cold War – by encouraging rumours that American scientists had created HIV and were spreading it throughout the continent to eliminate black people. The disease also seemed likely to spread to places considered geopolitically more important, such as India and China. The Cold War ended, but, as the epidemic persisted after 9/11, the potential rise of more extremist groups seemed even more threatening. Of course, US officials also feared the disease taking a stronger hold at home, affecting more than those groups relegated to society’s fringes. It could weaken the military and put America’s own stability at risk.

Intelligence agencies had been predicting the destabilising effects of AIDS since the 1980s, yet the world didn’t present a cohesive response until 2000. There’s no single reason why it took so long, but one was that the science on treatment and prevention was still murky, says Mitchell Warren, the executive director of AVAC, a global HIV/AIDS advocacy organisation. By the late 1990s, scientists had shown it was possible to treat and prevent the disease, which was enough to spur activists and political leaders to act. Short of a cure, the only way to stop the epidemic from ballooning was prevention.

§

A 25-year-old woman living in rural Malawi found herself very ill. She had shingles and malaria that wouldn’t go away; her weight had dropped precipitously. Though programmes to diagnose and prevent HIV had been running in the country for several years, this woman had never been tested, and neither had her four-year-old son. “She was living in denial, she didn’t want to discover she was HIV positive,” says David Odali, the director of the Umunthu Foundation, a non-profit that offers HIV testing and treatment and runs education campaigns in Malawi. The woman’s family encouraged her to go to Umunthu’s clinic in the small town of Bangwe, where both she and her son tested positive for HIV and started receiving treatment.

It saved her life; in the years since, the woman has had two more children, both of whom are HIV negative. The mother is able to do some work, more than she could do when she was ill, and the son is thriving in school. “He’s brilliant in school,” Odali adds. “He does come here sometimes on his own to get his treatment,” though his mother only recently helped him to understand why he was taking medicine every day when he didn’t feel sick.

Cases like this one are no longer uncommon. There’s no denying the huge impact that AIDS has had on the world population – in 2015, the World Health Organization (WHO) estimated that about 70 million people have been infected with the virus, and 35 million have died. And yet the effects have not been as dire as once feared; in 2001, experts predicted that 100 million would be dead from the disease by 2005.

Bold, creative individuals – scientists, activists, NGO workers, healthcare professionals – made this happen. But they wouldn’t have been there, their organisations unfunded, the research not conducted, without support from national governments.

The US government, for instance, allocated $6.6 billion to fight HIV/AIDS abroad in 2016 (independent of the $26.4 billion it spends on domestic programmes), making its budget many times larger than those of the UK, which allocated $980 million to fight AIDS in 2015, and Germany, at just over $200 million.

The bulk of the US money comes under the President’s Emergency Plan for AIDS Relief (PEPFAR), and trickles down through different government departments, such as Defense, State, and Health and Human Services, and diffuses into smaller agencies and non-profit organisations, or directly to foreign governments for their own treatment and prevention programmes, says Warren. About a fifth is carved out for the Global Fund. “Both of these organisations were the result of this call in 2000 of a need to change the way the world responded to HIV,” Warren says.

To Warren, it’s clear that the response would not have been as robust if HIV had not been considered a matter of national security. The reframing compelled tight-fisted government officials to make room in the budget. “At the end of the day, the most important people at the country level were not ministers of health. They’re ministers of finance,” Warren says.

The security dimension makes it a bigger political issue than public health, Simon Rushton says. It’s high politics. Peter Piot, who was director of UNAIDS for 13 years, says that this helped establish HIV/AIDS as an exceptional epidemic, requiring an unprecedented level of resources and coordination across sectors.

This produced real results. More than 18 million HIV/AIDS patients worldwide were receiving treatment in 2016, and the number of new cases per year dropped by 40 percent between 1997 and 2015.

It’s impossible to know what would have happened if the national security appeal hadn’t had this effect. As Warren puts it, if something didn’t happen, they’d succeeded. Some feared that the framing would divert funds from other public health issues, such as tuberculosis and malaria. Others said it would further stigmatise people. In Europe and Russia, for instance, people from Africa already faced discrimination in housing and the job market because they were feared to carry disease. The same happened to Haitians in the US.

And though it pulls in more money in the short term, framing one disease as a security issue may absolve countries from engaging with future epidemics that don’t present a security risk, wrote Susan Peterson, a professor of international relations at the College of William and Mary in Williamsburg, Virginia, in 2002.

The security framing may also shift the focus of the HIV/AIDS spending itself. When PEPFAR launched in 2003 with a budget of $15 million, its efforts initially focused on 15 countries. These were not the top 15 countries affected by AIDS at the time. “People have looked at that initial list,” says Rushton, “and it looks like it’s at least partly motivated by security concerns.” He notes that Vietnam, one of the 15 countries on the original list, had only 220,000 cases of HIV/AIDS in 2004 – a mere fraction of the number of people infected in Malawi (940,000), which did not receive initial attention from PEPFAR, and far less than Russia (more than 320,000), which similarly received no support.

And though countries like South Africa were at the centre of the AIDS epidemic and deserved the funding and attention they received, critics have suggested that global powers, including the US, might have been more invested in their political stability.

David Odali still struggles to get enough funding for Umunthu’s ambitious programmes, although a six-year partnership with the NGO AVERT has enabled them to reach out to more patients. Though he and his collaborators have had many successes, there were still 33,000 new cases of HIV in 2015 in Malawi. “As we are talking, someone out there is contracting the virus, through unprotected sex, through rape, through caring for a patient,” he says. “The infection is still there with us.”

§

When West Point was first dredged from the sea, in the 1940s, it was probably a beautiful place. This neighbourhood at the most northwestern point of Monrovia, Liberia, is a peninsula, cut off from the rest of the city by two rivers to the north and east, and with the Atlantic Ocean to the west. Its beaches are a sandy yellow, and a few palm trees dot the shore. But today, that beauty is only visible in fleeting moments, like afternoon light through slanted blinds. West Point is a slum, home to 75,000 people who live in densely packed houses cobbled together from roofing tin. Its beautiful beaches are coated with a layer of garbage. Many former child soldiers, disabled by war, live here; drug use is common. There is a market on the one main road that connects the neighbourhood with the rest of the city, on which patrons can buy shark freshly caught by the fishermen who shove off the beaches in long, narrow boats.

Since there’s only the one road, it wasn’t hard for the Liberian army to quarantine the neighbourhood one cool night in the heat of the Ebola crisis in August 2014. The week before, health officials quietly converted a school building into an Ebola holding centre; when the locals found out, some looted the facility, carrying off items that had likely been contaminated. So when the Liberian president issued a curfew on 20 August, West Point was also put under quarantine. Residents awoke that Wednesday morning to find their commutes thwarted by barbed wire; fishermen were stopped from pushing off in their boats.

The locals rioted. They rattled barricades and threw rocks at soldiers, who responded by opening fire. Food and water were hard to find, medical care was even rarer. After 10 days, the president lifted the quarantine. A 15-year-old boy died of complications from bullet injuries in his legs. “You fight Ebola with arms?” a 34-year-old resident yelled at the soldiers, according to the New York Times. No one in West Point was diagnosed with Ebola.

In the wisdom and comfort of hindsight, experts can assess the world’s response to emerging pandemics. The 2009 H1N1 (swine flu) outbreak was well-contained, partly because of good communication and partly due to simple luck: the disease wasn’t as deadly as feared. The Middle Eastern respiratory virus (MERS), which hit South Korea in 2015, didn’t spread because it didn’t evolve and was quickly contained.

But to many experts, the world’s response to Ebola was wanting. Public health officials admit that action wasn’t fast enough, that misinformation spread quickly among a largely illiterate population, that foreign policy makers lacked a cultural understanding, which allowed the disease to spread, and that governments in the most affected countries used too much force. As a result, more than 11,000 people died of the disease in West Africa.

And yet the death toll would have certainly been higher if not for the lessons learned from HIV.

The engineers of the world’s HIV response in the early 2000s knew that they were laying the groundwork to combat future epidemics. Richard Holbrooke, who died in 2010, said in his 2006 PBS interview: “There’s a possibility that we’re entering into an age where new diseases are beginning to break out… If that’s true – and a lot of friends of mine in the field think it is true – the first lesson is you’ve got to move really fast. The second lesson is you have to get away from mythology, stigmatisation and all these other things that created such a slow, slow reaction to AIDS.”

Because of HIV and those discussions that began in 2000, governments and international organisations have logistical protocols to address new epidemics. Emerging diseases are now discussed at the Security Council, as AIDS was. Should a new one arise, officials in the US government, along with international organisations such as the UN and the WHO, have designated procedures for assessing the threat and working with experts on the best way to respond. Time, they have learned, is of the essence – the slow growth of HIV diagnosis programmes meant that many people spent a long time unknowingly infected – during which time they infected others; physician and radio show host Stanley Monteith wrote in 1997 that the AIDS epidemic would have been preventable had health organisations acted earlier.

Now experts know that early response is key. By April 2003, six months after the severe acute respiratory syndrome (SARS) epidemic started, the US had 289 suspected cases, But the disease didn’t spread because of good planning and communication between local and federal health workers, public health officials told the New York Times. And the impetus for that was laid in the framing of the disease as a threat to national security.

In the process of meeting the need for HIV testing and treatment in remote areas, many African countries developed sophisticated systems to monitor emerging diseases. Ebola would have been a disaster if it had spread throughout Nigeria, the most populous country in Africa and a hub for international travel. But it didn’t, Warren says, because of systems put in place to combat HIV which were then used to fight Ebola. “The surveillance system and treatments of those Nigerians with Ebola was so rapid that the disease didn’t spread,” Warren says. “If you look at why, it’s because the health system had been developed and strengthened from the HIV response.”

Researchers are also in a better position to meet the challenge of a new infectious disease. Epidemiologists developed new techniques, such as contact tracing, in which scientists work backwards from a newly diagnosed patient to determine where else the disease might spread. Teams of scientists brought together to discover treatments for HIV have used their expertise to treat other rapidly mutating diseases – a team of HIV researchers at Walter Reed Army Institute of Research, based in Maryland but with facilities in Africa and South-east Asia, created one of the most promising vaccines to fight Zika virus. And when it comes to disease research within communities, scientists have found that they get much more cooperation if they work with local governments and community advisory boards before starting a project.

Charged by the national security argument, militaries – especially the US military – have become the quickest and most efficient force for quelling emerging infectious diseases. “The only institution that was felt could address Ebola at the scale at which it was needed was the US military,” Joshua Michaud says – the army had the communication, infrastructure and transportation to get the job done.

But that can come with a cost. The need to act quickly can sometimes elevate issues past the normal democratic checks and balances, so they are subject to less scrutiny. When security is at risk, it gives militaries licence to infringe on civil liberties. That’s what happened to West Point during the Ebola outbreak. It happened elsewhere, too – in the US, many questioned the quarantine practices of the Centers for Disease Control and Prevention. One woman, a nurse quarantined for two days after she returned from treating Ebola patients in Sierra Leone, tried to sue the governor of New Jersey for unlawful detainment (a judge dismissed the lawsuit in September 2016).

“One downside is that the security discourse can be misappropriated by those in power and used improperly to justify punitive policies and laws, which are only likely to fuel stigma, fear and spread of disease further,” Peter Piot says. “The military has a role to play, we just have to think in a considered, nuanced manner about how they can best support civilian-led efforts to contain pandemics.”

Each new pandemic will be different – where it starts, how contagious it is, how it’s transmitted. But as government agencies push to act quickly, more officials are realising that the first actions taken to fight a disease can determine whether the efforts are successful. If misinformation spreads early on, it can lead infected people to be stigmatised, which may inhibit them from receiving the best possible care. Warren recalls photos from the early days of the fight against Ebola in which healthcare workers were reluctant to touch patients.

“For a lot of us working with HIV, some of those pictures were harsh reminders for what it meant to be patient-centred in our care,” Warren says. “The stigma and culture around disease, around clinical research, is really intense. We need to be sensitive to that.” Public health workers had collaborated with community leaders before, but they had never tried to create these partnerships on such a massive scale until the HIV response. Ceremonies surrounding stages of life, such as birth and reaching sexual maturity, create different ways for disease to spread. Only with sensitivity to local cultural practices – what purpose they serve, and how they can be modified while still keeping the main point of the ritual intact – could doctors and researchers stop the spread of disease. Officials were faced with a similar challenge during the Ebola epidemic, when they discovered that traditional burial practices, such as the communal washing and cleaning of the dead body, were spreading the infection.

§

Public health emergencies come and go, but HIV appears to be here to stay, at least for the next few decades. Some fear that, as health workers settle in for a long fight, governments will no longer prioritise HIV as they did a decade ago, limiting the funding to support their efforts. Progress in reducing the number of new infections has slowed. “AIDS is slipping down the policy agenda because we’re also now in the long slog phase,” Simon Rushton says. “We know it’s not something that will be solved in the next five to 10 years – it demands a continued commitment for another 20 to 30 years at least. That’s a much less sexy policy sell. Policy makers like problems they can solve during their term.”

With the election of Donald Trump as President of the United States, the country’s role in the continued fight against HIV/AIDS is further called into question. During much of Trump’s campaign, no one was certain where the candidate stood. There were reasons to feel optimistic about the country’s continued support. In a 2008 speech, Vice President Mike Pence, then serving in the House of Representatives, had said that the US had a “moral obligation to lead the world in confronting the pandemic of HIV/AIDS”, bolstering his stance with a security argument.

But early signs from the new administration have not been heartening. In his first week in office, Trump signed an executive order that withholds funding from organisations that perform abortions or provide information about them. In the past, similar but less expansive policies have resulted in the closure of many rural clinics, often the only place where locals could receive drugs to treat HIV and AIDS. Now many organisations fear the effect will be even more dramatic.

In some ways it’s harder than ever to imagine a world in which infectious diseases no longer exist, the idealistic bubble burst by HIV. And yet in other ways, the world is better poised than ever before to make that fantasy into reality. That single January 2000 meeting set the stage for leaders within countries to have their own discussions about how to respond to the epidemic, about how to spend money to counter it within their own borders and beyond.

As the then US Vice President Al Gore said at the meeting, AIDS “is a security crisis because it threatens not just individual citizens, but the very institutions that define and defend the character of a society”.

“It was one of the most exciting days we had in the UN,” Richard Holbrooke told PBS, “and I think history shows that it helped redefine the issue.”

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

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Leicester’s new A&E / ED department

Today at 7pm the Balmoral Building at LRI (main entrance) will close permanently so access to A&E/Balmoral will not be possible.

Here’s a new map of the LRI site, with directions to both Adult & Children’s ED.

You can see the new department online at Leicester Mercury.

Watch: First look around Leicester’s £48 million emergency department

http://www.leicestermercury.co.uk/here-is-a-first-look-at-leicester-s-48-million-emergency-department/story-30288394-detail/story.html

New £48 million emergency department in Leicester opens its doors to patients – live updates

http://www.leicestermercury.co.uk/new-48-million-emergency-department-in-leicester-opens-its-doors-to-patients-live-updates/story-30294786-detail/story.html

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HIV Pioneer Mark Wainberg, PhD, Dies Unexpectedly

Dr. Mark Wainberg, a Montreal-based trailblazer in HIV/AIDS research and an internationally renowned scientist, died Tuesday after swimming in rough water in Bal Harbour, Fla. He was 71.  Bal Harbour police confirmed Wainberg’s death yesterday.

Acting police chief Miguel De La Rosa said authorities had posted a warning on the beach Tuesday about high surf and high current conditions.  De La Rosa said Wainberg’s family was with him and his son had tried to rescue him.

“The son swam out to where he had seen his dad, was able to locate him and began to swim back to shore with him,” said De La Rosa. “Other beach-goers went into the water and assisted him in bringing him onto the shore.”

By the time officers arrived, Wainberg was already on the shore, said De La Rosa. He was transported to hospital, where he was pronounced dead.

Groundbreaking researcher

A leader in the fight against HIV/AIDS, Wainberg was, at the time of his death, lead investigator at the Lady Davis Institute for Medical Research at the Jewish General Hospital and director of the McGill University Aids Centre.

He was also a professor in the departments of microbiology and immunology, medicine and pediatrics at McGill.

The HIV/AIDS research pioneer has been recognized for his part in the discovery in 1989 of the anti-viral drug 3TC, or Lamivudine, which is used in combination with other medications to treat the infections caused by HIV.

“There were many discoveries related to Dr. Wainberg, but not only discoveries, he was a leader — an international leader,” said Dr. Réjean Thomas, the co-founder and CEO of Clinique Médicale L’Actuel, a clinic that tests and treats sexually transmitted infections and diseases, who worked with Wainberg for more than 30 years.

Dr. Cécile Tremblay, an infectious disease specialist at the University of Montreal and researcher at the CHUM Research Centre, said Wainberg was her mentor from the time she was a medical student 25 years ago.

“Before I started my med school, as my career revolved around HIV research, I was collaborating closely with him. He was a leader in our field and he was a mentor. His loss is very significant for me,” she told CBC.  “He was a pioneer in the fight against HIV.”

Wainberg is known for his contribution to the field of HIV drug resistance, helping to identify many of the mutations in the HIV genome responsible for drug resistance.

“[He] was instrumental in shaping how we use these drugs nowadays, so that they have become so much more efficient than what they were in the past,” she said.

“Patients are better off because of the work he has done in his career.”

The Canadian Medical Hall of Fame also recognized Wainberg for his accomplishments in improving the lives of people living with HIV.

“This once baffling and almost uniformly fatal disease is now treatable, survivable, and increasingly controlled in much of the world. One of the people significantly involved in this tremendous human achievement is Dr. Mark Wainberg,” the Hall of Fame’s website says.

Wainberg devoted his life’s work to AIDS research and HIV/AIDS awareness, serving as president of the International AIDS Society from 1998 to 2000.

He helped organize the 13th International Congress on AIDS in South Africa, in 2000.

“He was the first president to decide to hold an international conference in Durban, South Africa, in a region where the epidemic was devastating,” Tremblay said. “He was very proud of that because it shifted the focus to try to control the epidemic across the world and bring the science to the developing countries. He was a pioneer on that level as well.”

Wainberg was also a recipient of the National Order of Quebec and the Order of Canada.

Our thoughts go out to Mark’s family and friends at this difficult time, RIP Mark we thank you for your work.

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Scientists Have Found A Way To Make Cells Resistant To HIV

TSRI Senior Staff Scientist Jia Xie was first author of the new study. (Photo by Madeline McCurry-Schmidt.)

In a remarkable step forward in the potential treatment of HIV, scientists in California have successfully created a cell population that is resistant to the disease.

The new approach, described as a form of “cellular vaccination” aims to offer long-term protection for patients by tethering HIV-fighting antibodies to their immune cells.

Jia Xie, senior staff scientist, said: “The ultimate goal will be the control of HIV in patients with AIDS without the need for other medications,” as even with antiretroviral drug treatments, people with HIV still suffer much higher incidences of cancer and other deadly diseases.

Here, cells protected from rhinovirus by membrane-tethered, receptor-blocking antibodies survive well and form colonies. Credit: Jia Xie, Lerner Lab

Joseph Alvarnas who was involved in the study, said: “HIV is treatable but not curable – this remains a disease that causes a lot of suffering. That makes the case for why these technologies are so important.”

The new technique is superior to therapies where antibodies float freely in the bloodstream at a relatively low concentration, as the antibodies hang on to the cell’s surface blocking HIV from accessing a crucial receptor and spreading infection.

Known as the ‘neighbour effect’ the team showed that resistant cells could quickly replace diseased cells, potentially curing a person of HIV through gradual displacement.

Xie said: “You don’t need to have so many molecules on one cell to be effective.”

In essence, the researchers had forced the cells to compete in Darwinian ‘survival-of-the-fittest’ selection in a lab dish. Cells without antibody protection died off, leaving protected cells to survive and multiply, passing on the protective gene to new cells.

To infect a person, all strains of HIV need to bind with a cell surface receptor called CD4, so the team at the Scripps Research Institute and City of Hope research centre near Los Angeles, tested antibodies that could potentially protect this receptor on the very immune cells normally killed by HIV.

The antibodies recognized the CD4 binding site, blocking HIV from getting to the receptor.

The next step in this research is to try engineering antibodies to protect a different receptor on the cell surface, according to Xie.

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