Today is World Tuberculosis Day. What could this mean for you?

World Tuberculosis Day is marked every year on 24 March, highlighting one of the world’s top health challenges. With nine million new cases and 1.5 million deaths each year, tuberculosis is an ongoing epidemic.

For World TB Day 2015, the United Nations, the Stop TB Partnership and the World Health Organization are calling on all governments and health organisations to mobilise political and social commitment for further progress towards eliminating the disease as a public health burden. The theme this year is “Reach the 3 Million: Reach, Treat, Cure Everyone” – aimed at securing care for the three million who fail to be treated every year.

The date commemorates the day in 1882 when Dr Robert Koch, the German physician and pioneering microbiologist, announced to the University of Berlin’s Institute of Hygiene that he had discovered the cause of tuberculosis. His discovery marked a turning point in the story of the virulent human infectious disease.

Yet over a century on, the disease continues to be a public health problem, with the highest rates in Sub-Saharan Africa. A report by the European Centre for Disease Prevention and Control and WHO found that 1,000 people a day throughout Europe develop the disease and although the continent has experienced an annual 6% decline, Europe will not be TB-free until the next century.

There has been a sustained decline in cases over the last decade but rates of multi-drug resistant tuberculosis, MDR-TB, remain at very high levels.

WHO regional director for Europe, Zsuzsanna Jakab, said only 50% of an estimated 75,000 multi-drug resistant TB patients were found in 2013 and just half were successfully cured.

“Multi-drug resistant TB is still ravaging the European region, making it the most affected area of the entire world,” he said.

TB & HIV Co-infection

When people have a damaged immune system, such as people with HIV who are not receiving antiretroviral treatment, the natural history of TB is altered. Instead of there being a long latency phase between infection and development of disease, people with HIV can become ill with active TB disease within weeks to months, rather than the normal years to decades.

The risk of progressing from latent to active TB is estimated to be between 12 and 20 times greater in people living with HIV than among those without HIV infection. This also means that they may become infectious and pass TB on to someone else, more quickly than would otherwise happen. Overall it is considered that the lifetime risk for HIV negative people of progressing from latent to active TB is about 5-10%, whereas for HIV positive people this same figure is the annual risk.

Many people living with HIV are now taking antiretroviral treatment for their HIV infection. This helps their immune system, but the risk of developing active TB is still higher than in people without HIV infection. Also, there are reports from some African countries that people are starting to become infected with drug resistant HIV. This makes it much more difficult to provide them with effective antiretroviral therapy, and this in turn could result in millions more, of the estimated 40 million people thought to be living with HIV worldwide, developing active TB in the next few years.

Find out how the body reacts to tuberculosis here

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Today is World Tuberculosis Day. What could this mean for you?

World Tuberculosis Day is marked every year on 24 March, highlighting one of the world’s top health challenges. With nine million new cases and 1.5 million deaths each year, tuberculosis is an ongoing epidemic.

For World TB Day 2015, the United Nations, the Stop TB Partnership and the World Health Organization are calling on all governments and health organisations to mobilise political and social commitment for further progress towards eliminating the disease as a public health burden. The theme this year is “Reach the 3 Million: Reach, Treat, Cure Everyone” – aimed at securing care for the three million who fail to be treated every year.

The date commemorates the day in 1882 when Dr Robert Koch, the German physician and pioneering microbiologist, announced to the University of Berlin’s Institute of Hygiene that he had discovered the cause of tuberculosis. His discovery marked a turning point in the story of the virulent human infectious disease.

Yet over a century on, the disease continues to be a public health problem, with the highest rates in Sub-Saharan Africa. A report by the European Centre for Disease Prevention and Control and WHO found that 1,000 people a day throughout Europe develop the disease and although the continent has experienced an annual 6% decline, Europe will not be TB-free until the next century.

There has been a sustained decline in cases over the last decade but rates of multi-drug resistant tuberculosis, MDR-TB, remain at very high levels.

WHO regional director for Europe, Zsuzsanna Jakab, said only 50% of an estimated 75,000 multi-drug resistant TB patients were found in 2013 and just half were successfully cured.

“Multi-drug resistant TB is still ravaging the European region, making it the most affected area of the entire world,” he said.

TB & HIV Co-infection

When people have a damaged immune system, such as people with HIV who are not receiving antiretroviral treatment, the natural history of TB is altered. Instead of there being a long latency phase between infection and development of disease, people with HIV can become ill with active TB disease within weeks to months, rather than the normal years to decades.

The risk of progressing from latent to active TB is estimated to be between 12 and 20 times greater in people living with HIV than among those without HIV infection. This also means that they may become infectious and pass TB on to someone else, more quickly than would otherwise happen. Overall it is considered that the lifetime risk for HIV negative people of progressing from latent to active TB is about 5-10%, whereas for HIV positive people this same figure is the annual risk.

Many people living with HIV are now taking antiretroviral treatment for their HIV infection. This helps their immune system, but the risk of developing active TB is still higher than in people without HIV infection. Also, there are reports from some African countries that people are starting to become infected with drug resistant HIV. This makes it much more difficult to provide them with effective antiretroviral therapy, and this in turn could result in millions more, of the estimated 40 million people thought to be living with HIV worldwide, developing active TB in the next few years.

Find out how the body reacts to tuberculosis here

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Living with HIV: six very different stories

‘I don’t know how I survived’: Jonathan Blake at home in London. Photograph: Antonio Olmos for the Observer

Since HIV was first diagnosed in Britain 30 years ago, the reality of having the virus has changed dramatically. From a survivor of the 1980s epidemic to a recently diagnosed mother in her 60s, Eleanor Tucker hears six life-affirming stories

Story via The Observer (@obsmagazine)

Jonathan Blake, 65

Lives in London with his partner. He was one of the first people to be diagnosed with HIV in this country

The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess. It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.

They wanted to put me on AZT, later revealed to be a failed chemotherapy drug. I refused – I didn’t trust the drug companies; still don’t. But saying no might have saved me. I saw so many people die – of the virus, but also from the drugs. In the back of my mind was always: “It doesn’t matter, I’m going to die soon anyway.” So I got out there and lived my life.

Not long after my diagnosis I met my partner, Nigel, then got involved with LGSM: Lesbians and Gays Support the Miners. I thought we’d take the story of what we did, raising money for the mining families of a town in Wales, to the grave. But a film about it, Pride, came out last year. I like the way my character [played by Dominic West] is portrayed: he’s neither a victim or tragic – HIV is just part of who he is.

I managed with no medication until 1996 and then tried different combinations until I found the one I’m on now. My health is not perfect, but I’m here 30 years later. I don’t know how I survived. The funny thing is, this life I’ve had with HIV, I wouldn’t have missed it for the world. It’s taken me on some amazing adventures.

Lizzie Jordan, 33

Was diagnosed in 2006. She lives with her 10-year-old daughter

‘My only reference point was Mark Fowler in EastEnders’: Lizzie Jordan. Photograph: Antonio Olmos for the Observer

I had been with my partner Benji for four years and our daughter Jaye was just 13 months old. One day Benji came home feeling unwell. We thought it was just a sinus infection, but within four days he was dead.

I have never come up against negativity, which I think is partly because I’m open about my situation

Lizzie Jordan

Postmortem examinations showed that he had something compromising his immune system. That something was HIV. I was tested soon afterwards – as was Jaye, who I was still breastfeeding. Her result was negative. Mine was positive. At that point I was in shock. My only reference point was Mark Fowler in EastEnders. But I’m a mother and I had Jaye to think of, so I just had to keep going.

Although my first thought was to keep my diagnosis a secret, I realised there were women Benji had slept with before me who needed to know. So I decided to be as open as I could. It was hard, though, and his family refused to believe that he’d had Aids. Some of them even blamed me.

That was eight years ago. Today I am happy, healthy and symptomless. I started taking medication last year, and it’s just one pill a day.

Jaye is 10 now and I have told her age-appropriate things. To start with, it was as simple as “Mummy has bugs in her blood.” Now she understands a lot more.

I have never come up against negativity, which I think is partly because I’m open about my situation. I’ve dated other HIV-positive people, but recently I met someone on Twitter who isn’t. It says on my profile that I write for beyondpositivemagazine, but I had to check he knew what that meant. He did. It’s a relief when it doesn’t matter to people, but there’s still a lot of work to be done.

Steve Craftman, 58

Lives in Dyfed, Wales. He was diagnosed in 1987

There are three epidemics, in my view: the newly diagnosed, who are going to lead pretty normal lives; those who recovered from the early days – the 80s and 90s; and then there are the people like me, who survived but with a lot of health problems.

‘I’ve done a lot of grieving’: Steve Craftman. Photograph: Antonio Olmos for the Observer

Back then they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. I have osteopenia [the stage before osteoporosis] in my ankles and hips, which means I feel unsafe riding a motorbike now. The damage to my body is nobody’s fault – the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down.

I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. In America they’ve come up with a name for it: Aids survivor syndrome – a bit like PTSD. I’m still here, though, nearly 30 years on. Am I tough? Not really. I think I’ve just been lucky.

I’ve had my fair share of prejudice over the years. I was living in Bristol 10 years ago with my partner, John. We had abuse and threats shouted at us, and our car was vandalised. The police advised us not to pursue it – they said we’d be better off moving on. We set up home in a tiny village in Wales, where we were more accepted than in the city. John died there, from Aids, in 2007.

I’m open about my situation. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have Aids. I turned round and showed her the “biohazard” symbol I had tattooed on the back of my neck last year. “I’m guessing that’s a ‘yes’ then,” she said.

Matthew Hodson, 47

Lives in London with his husband. He was diagnosed in 1998

‘If I can’t be upfront about it, who can?’: Matthew Hodson. Photograph: Antonio Olmos for the Observer

I was tested in 1998 after they announced at the International Aids Conference in Vancouver that combination therapy was effective. I suppose I needed to know that there was some treatment that would work first before I wanted to know. Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it “life altering”, not “life limiting”.

I didn’t take it very well and for a while I stopped having sex and felt dirty, diseased. But people go in different directions, and after I’d thought all the worst-case scenario stuff, about not making it to 50, I took control.

I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia

Matthew Hodson

Starting new relationships was hard. There are more interesting things about me than the presence of a virus, but I can see that someone would want to know. Thankfully I’m married now, so I don’t need to worry about disclosure. If I wasn’t, I think I’d tell people straightaway. I have a job, I’m secure and I’m comfortably off – if I can’t be upfront about it, who can? In a way, it’s my responsibility.

As part of my job with I’m chief executive of the gay men’s health charity GMFA, so I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia. We need to remember these images are part of history now – but there’s still a lot of bad information around. It’s because HIV is largely sexually transmitted and it’s often gay men who have it. There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.

It’s frightening to look back. If you were a young gay man in the mid-80s, you would have experienced a loss comparable to someone who survived the First World War. I knew 30 people who died during that period, but many men knew many more.

Jo Josh, 66

Lives in Reigate. Diagnosed in 2008. She has a 25-year-old daughter

‘I’ve become a kind of pin-up for ageing with HIV’: Jo Josh. Photograph: Antonio Olmos for the Observer

HIV infection conjures up an image in people’s minds. Most infection is via unprotected sex and for a lot of people that means there’s something nasty about it. I hate the word “disclosure”. I don’t feel I have to “disclose” if I don’t want to. I didn’t tell my daughter until I’d come to terms with it myself. She was 18 at the time, and I was in shock. It takes a couple of years. To start with you don’t know much about HIV, how much better the medication is these days. Then you start to realise it’s going to be OK.

I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it

Jo Josh

I “came out” by going on BBC News for Body & Soul, an HIV charity I’m involved with. Afterwards the phone wouldn’t stop ringing. My friends were supportive, but very emotional. A lot of them used the “death voice”, telling me how brave I was. “No, really, I’m fine,” I’d say. There were a few silences though.

I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it. I don’t yet need any medication and I feel like a fraud sometimes. I’ve become a kind of pin-up for ageing with HIV. I don’t talk about how I was infected, though. It starts to become a bit of a soap opera, and I’m more interested in being open about life with HIV than how I got it. That’s the only way we’re going to change perceptions.

Becky Mitchell, 40

Diagnosed in 2012. She lives in Bristol

I can’t say I was delighted when I was diagnosed, but I wasn’t totally freaked out. As part of my job with the Environment Agency I saw a lot of our former chairman, Lord Chris Smith, a high-profile HIV-positive man. He always seemed so active. I thought: maybe it’s not so bad these days.

‘There’s no shame. I just crossed paths with someone selfish’: Becky Mitchell. Photograph: Antonio Olmos for the Observer

I’d had a test when I found out my partner was HIV positive. He’d chosen not to tell me, so that was the end of our relationship. I wasn’t showing any symptoms, and I’d actually only been infected about two or three months before. With my CD4 count [the white blood cells that fight infection] still at a safe level, I wouldn’t normally take medication at this stage, but I volunteered for a clinical trial where they wanted people with good counts and low levels of the virus. So I’m taking one pill a day.

Because of the medication, and the fact that I look after myself, my health is really good. I’m more careful, too: I used to push myself too hard when I was exercising – now I allow myself recovery time. Being open about my HIV is really important to me. There’s no shame. I’m a normal woman – I didn’t do anything risky; I just crossed paths with someone selfish. That could happen to anyone, and I want people to realise that. The only stigma I’ve ever come up against was actually within the NHS. I’d had a cycling accident and a young doctor asked me, in front of my mother, if I was an intravenous drug user. I was stunned, but it’s just ignorance, a lack of education.

I don’t feel any different physically, but HIV has been a wake-up call. I feel a sense of urgency: life is for living and I don’t want to waste time sweating the small stuff.

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Shock and Anger in Cambodian Village Struck With HIV

A woman prepared medicine for her mother in Roka, western Cambodia, a farming village where more than 200 people have tested positive for HIV.

Frail and depressed after her diagnosis, Chem Mao decided to take her life by climbing a mango tree in her backyard, fastening one end of a rope around a sturdy branch and the other around her neck, and jumping. As she shuffled weakly beside her cinder-block house toward her family’s small orchard she saw her grandchildren playing nearby and relented, collapsing into tears.

“I didn’t have enough strength to get up the tree,” she said. “Maybe I’ll try again another time.”

Ms. Mao, 55, is among more than 200 villagers in this rice farming community in western Cambodia who tested positive for HIV last month. The Cambodian authorities say that an unlicensed doctor who reused syringes and other medical equipment spread the infection.

Even in a country inured to hardship and suffering, the infection of such a large number of people within a radius of a few miles was shocking.

The victims are everywhere — in the wooden stilt houses, in the paddies harvesting rice, in the gilded Buddhist temple at the entrance to the village, and in the playground of the yellow ocher primary school. The 82-year-old abbot of the temple was infected, as were 12 children who attend the primary school.

Grief seems to reach a crescendo in Roka as a visitor walks down the main dirt road: Five minutes from the temple is a cluster of houses where 16 members of an extended family were infected.

What the victims appear to have in common is that they were treated by Yem Chrin, a village medical practitioner who was charged last month with aggravated murder, intentionally spreading HIV and practicing without a medical license. He is in prison while awaiting trial in the nearby city of Battambang.

The provincial prosecutor, Nuon San, said in an interview that a number of people in the area had died from HIV in the past and that the authorities were investigating whether Mr. Chrin may have been responsible. Officials quoted in the Cambodian news media said Mr. Chrin had admitted reusing needles and syringes.

For two decades, Mr. Chrin made house calls to sick villagers here, one of seven unlicensed doctors in the community, officials said. He trained and practiced as a nurse in a refugee camp during the convulsive years after the fall of the Khmer Rouge in 1979, according to his daughter, Chrin Reaksa.

When he moved to Roka, “more and more people asked him for help, so he started his medical practice,” Ms. Reaksa said in an interview. “The government never expressed any concerns about a license.”

Many villagers, even those infected, staunchly defend Mr. Chrin, describing him as a kind man who treated even those who could not pay.

“Honestly I don’t think the doctor caused this,” said Chhay Yao, 76, the matriarch of the family in which 16 people were infected. “He was so clean. And he’s not a bad person. If we had money we gave it to him. If not he would always say, pay me later.”

He made house calls, and was happy to oblige villagers who preferred a drip or injection instead of pills.

The villagers’ affection for the doctor does not blunt their pain and bewilderment over the mass infection. Prum Em, Ms. Yao’s 84-year-old husband, stares with blank incomprehension when asked about the infections, which struck across three generations.

“I have done only good deeds my whole life,” he said. “It’s inconceivable that the family could have this much bad luck.”

One relative, Em Seiha, 23, passed out when she learned she was infected.

“I was worried that my husband would think that I had had an affair,” she said.

A HIV infection is no longer the death sentence it once was and the Cambodian government is providing free antiretroviral medication, the drugs that suppress the virus and stop its progression. But Ms. Seiha feels condemned.

“I’m afraid that I’m going to die at an early age, leaving my son behind,” she said.

Family members say they are treated with suspicion when they travel outside the village, including one mother who was instructed to wash her hands with antibacterial gel when the clerks in a shop learned she was from Roka.

“People from other villages are not welcoming us anymore,” said Em Soeum, a member of the family. “They discriminate against everyone from the village, including HIV negative people.”

The mass infection in Roka comes just as Cambodia has received accolades for its handling of HIV In early December, around the time the infections were discovered, the United Nations praised Cambodia for reducing the number of new HIV infections by 67 percent since 2005. Cambodia has a HIV prevalence rate of around 0.7 percent, a third lower than that of neighboring Thailand, according to United Nations statistics.

The United Nations says two-thirds of the 75,000 people living with HIV in Cambodia receive antiretroviral therapy, the highest percentage of access to treatment among the country’s neighbors.

In a country of extreme poverty and lax law enforcement, it is not yet clear how widespread the reusing of needles is and whether this was a tragedy waiting to happen.

There are no nationwide statistics of the number of unlicensed doctors, but the Ministry of Health is committed to reinforcing the law, said Ly Penh Sun, the deputy director of the National Center for HIV/AIDS.

Aid workers said the outbreak here was unusual. “I’ve never seen anything like this,” Kong Wuthy, a project manager at the ARV Users, a nonprofit organization that helps people with HIV in Cambodia.

Roka is about five kilometers, or about three miles, from the nearest paved road and a 15-minute drive from Battambang, a hub of commerce in western Cambodia.

Soeun Sophath, the deputy head of the government health clinic in the village, which is staffed with nurses, said the first sign that something was wrong here came in August, when a routine HIV screening of a pregnant woman came back positive. It was the first positive result in the village since the screening program began two years ago, and health workers could not find an explanation for the infection. When another pregnant woman tested positive in November as well as an elderly man and his daughter-in-law, villagers panicked and stormed the health center to be tested. Dozens tested positive.

“They were crying and crawling on the ground and hugging each other,” Ms. Sophath said. “I was crying, too. I was shocked.”

Prime Minister Hun Sen initially expressed disbelief that the tests were correct. “Right now, 99 percent, I don’t believe it’s AIDS,” he was quoted as saying in the Cambodian news media.

A few days later, as the police and medical investigation and treatment teams sent from Phnom Penh blanketed the community, a court in Battambang charged Mr. Chrin.

Not everyone in the village is forgiving of Mr. Chrin. Ms. Mao bursts into a tearful rage when asked about him.

“I want to chop him to pieces. I want to torture him,” she said. “I want to inject my blood into his family members so they know what it feels like.”

Described by her neighbors as one of the most talented farmers in the village, Ms. Mao has been too weak to work lately. Her cucumber plants, neatly arrayed in rows, are dead. The bitter melons that she planted a few steps from her house have withered on the vine. A row of cornstalks are yellowed and stunted.

Ms. Mao said the HIV medication, which she began taking this month, made her feel nauseated and weak.

“I’ve always been able to take care of myself,” she said. “No one has ever helped me and I don’t want anyone’s help. I just want to be able to work again.”

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This week’s Shooting Challenge Winner!

Night Sweats 3 by Zoe Van De Velde

Congratulations once again ago to Zoe Van De Velde, in our final Shooting Challenge of this series.  Zoe has entered every week and brought with her thought provoking ideas and meanings which challenge the standard norms in HIV awareness work.  From the onset in Night Sweats 3, Zoe is illustrating seroconversion from the beginnings of HIV infection.  Though this photograph could also depict advanced HIV infection or possibly AIDS.

Zoe has said she is reminded of the Thom Gunn poem entitled “The Man with Night Sweats’ as he saw his friends dying.

I wake up cold, I who

Prospered through dreams of heat
Wake up to their residue,
Sweat, and a clinging sheet.

My flesh was its own shield:
Where it was gashed, it healed.

I grew as I explored
The body I could trust
Even while I adored
The risk that made robust,

A world of wonders in
Each challenge to the skin.

I cannot be sorry
The given shield was cracked
My mind reduced to hurry,
My flesh reduced and wrecked.

I have to change the bed,
But catch myself instead.

We hope to catch up with Zoe in the near future and talk about her photographs she has shared with us.

An overall winner of the shooting challenge will be chosen on Wednesday 17th December 2014 at the Positive Art exhibition on Charles Street, Leicester.  (Details here)

Thank you to everyone who has participated in the Shooting Challenge, we hope you had fun with your photography as we have had viewing your photographs.

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Young, British, and Living With HIV

“I remember not getting out of bed other than to use the loo. My friend had to stay with me just to make sure I was eating,” says ​Niyi Maximus Crown, a 25-year-old man who was diagnosed HIV positive in December 2011. “I didn’t even recognize my own thinking voice. I felt like I was going to be single for the rest of my life. The feelings of worthlessness made me angry and I started to hate myself.”

Last week, ​Public Health England (PHE) released its ​latest report on HIV. “In the UK there are 107,800 people living with HIV,” says Eleanor Briggs, Assistant Director of Policy and Campaigns at National AIDS Trust. In London, almost one in eight gay and bisexual men are HIV positive. Based on the stats from PHE, Briggs adds, “We can say about a third of people living with HIV infection, both diagnosed and undiagnosed, were resident in London.”

What’s more frightening is that PHE estimates that 24 percent of the people in the UK with HIV are currently undiagnosed.

Brandon Wardell Is a 22-Year-Old Comic Who’s Already Done an Album with Bob Odenkirk

Early diagnosis of HIV is crucial. Briggs states that a late diagnosis can mean treatment becomes less effective, reducing a person’s lifespan. Medication also helps stop the spread of HIV by lowering the amount of HIV virus in a positive person to undetectable levels so they are ​unlikely to pass it on.

And yet few people are talking honestly about HIV. In terms of everyday knowledge on the gay scene, HIV exists somewhere in limbo between the grim ​tombstone adverts of the 80s, statistics that get bounced around annually from numerous health organizations and the raw realities of chemsex-fuelled bareback sessions. The subject usually makes an appearance in the media once a year when ​World AIDS Day rolls around. A leading HIV consultant ​told the BBC that there’s a “complete lack of awareness” of the risks among many gay men in the UK.

As gay venues up and down the country prepare to mark World Aids Day (on December 1) with fundraising events for various LGBT charities, though, how many people do you know are comfortable with talking openly about being HIV positive? Do you even know anyone that’s openly HIV positive?

The truth is that, as a community, we still drive people who live with HIV into the closet. It’s not surprising that most gay men feel they want to keep their status private. Many struggled during their lives to come out as gay to their friends, families or work colleagues, and they may not even be out in all aspects of their lives. Having to then deal with the stigma that still exists around being HIV positive is akin to having to deal with a second coming out and, once again, another round of judgement and shame.

A few HIV negative people share their thoughts. “If you get HIV from unprotected sex you deserve it,” said one. Many might privately agree with him. But does that mean they deserve to feel forever alienated by society?

Niyi is better known in London’s gay clubs as Maximus Crown. He is one of the only DJs that is publicly out about being HIV positive, which is a big deal. The UK gay scene has very few openly HIV positive DJs, drag queens or promoters. But Niyi didn’t really have the choice of whether he should put his status out there—his best friend at the time decided to go public with it on Facebook for him.

“My best friend stayed with me every day to make sure that I wasn’t alone, didn’t starve or try and kill myself,” Niyi recalls. “Six months later I decided to distance myself from him because I started to notice things about our friendship that I wasn’t OK with. To get back at me he went onto the Facebook event page for a party I was booked to DJ at and posted a series of comments about me being HIV positive.”

The comments included accusations that Niyi had been having unprotected sex while aware he was HIV positive. “When it happened I wasn’t angry, I just wanted to log out of the universe. If I could have closed my eyes and stopped existing I would have, but it forced me to own my status, which in turn made me more comfortable discussing it publicly.”

If you are old enough to remember ​the campaigns of the 80s, then safer sex and the issues around HIV would have been drummed into your consciousness. But with the advent of combination therapy and the dramatic development of antiretroviral drugs that revolutionized care over the last fifteen years, AIDS-related deaths dropped substantially. Between 2001 and 2011, the rate of new infections ​dropped by 20 percent.

As the number of deaths fell, though, so too did government resources that educated people about HIV. Schools barely touched on the subject. To most people, it was seen as a disease that only affected poorer countries. It’s no wonder that the number of infections in young people has risen comparatively steeply compared to other age groups. As the ​United Nations Population Fund say, young people remain at the centre of the HIV epidemic in terms of rates of infection, vulnerability, impact, and potential for change. The young have grown up in a world changed by AIDS, but so many still lack the correct knowledge about how to prevent HIV infection. ​

For many recently infected guys, getting their head around living with HIV is one of the biggest challenges.

James Hanson-McCormick, 24, who was 18 when he was diagnosed with HIV said “I had no idea what HIV was or how it was contracted. I have had six years to think about my status, and not a single day goes by without me thinking about it. It’s so hard. I wish I knew more [then], I wish I had been better educated and that I knew enough to try and prevent it happening.”

It might sound naïve, but James isn’t alone in his experience. ​Luke Alexander is from Oldbury, a small town outside Birmingham, and was diagnosed HIV positive in June 2013. He was 18. “If I was in a sexual relationship with a guy when I was 15 or 16 it was monogamous,” he tells me. “When I hit 18 I treated myself to a fancy phone and discovered these apps and clubs. You’re new to everything and people say ‘download this’ and you find people want to hook up with you. It’s validation. You become quite promiscuous.”

Luke’s candidness took me aback. “I became incredibly egotistical and quite narcissistic,” he admits. “Add drugs and alcohol into the equation and it becomes quite a habit. One thing led to another and I didn’t take any precautions.”

Will Harris, Head of Media for ​Terrence Higgins Trust, says that while research shows that most gay men use condoms most of the time, it only takes one instance of unprotected sex for HIV to be passed on. “Condom use has to be consistent… It’s basic human nature to under-estimate risk, so our community needs to keep finding ways to reinforce the message that ‘He looks fine, it’ll probably be OK’ won’t give you the protection that a condom will.”

Earlier this year, Luke ​made headlines when he went on ITV’s This Morning to discuss his HIV status. “I never heard anything about HIV in school,” he said. “You can become a bit reckless when you come of age, but it’s far worse if you have no basis of knowledge to refer to.”

Like James, Luke’s ​sex and relationship education in school was virtually non-existent. “It lasted a few hours. If people weren’t there, they didn’t receive it. While they stressed the importance of contraception, it was for pregnancy. When I asked about anal sex, they said, ‘We don’t recommend it.’ I felt embarrassed. I just wanted to hear their perspective.”

Harris agrees that the education system has failed in this regard, saying that:

“Young gay men are generally frozen out by the current approach to sex education in schools.”

“The past is the past, though, and you can’t change that,” James reasons. “The great thing now is I’m healthy and happy. I’ve been on meds for five years now and doing so well. My health, in general, is alright.”

But living with HIV isn’t just about monitoring your physical wellbeing. The emotional strain of the constant check-ups and coming to terms with the virus can also present its own psychological strain.”Physically I’m fine,” James says. “I do suffer with depression, but that’s down to several things—not just my HIV. Sometimes it’s difficult juggling lots of meds every day. Often my depression gets bad and tells me I’m worthless and to not take it. But I have faith in medicine that one day there will be a cure.” His biggest wish is more altruistic still: “More knowledge and understanding around HIV and AIDS.”

For many recently infected guys, getting their head around living with HIV is one of the biggest challenges. Stigma is a major issue.

“Robert,” 29, (not his real name), has been HIV positive since 2007. A casual partner sexually assaulted him when he was passed out after a heavy drugs session. Only his closest friends and immediate family are aware of his status. He puts this down to the assumptions that people make about those who are positive. “It’s not the fact that it’s an unattractive quality [to be HIV positive], it’s that people think you had a choice. You hear a lot about bareback parties and people who think that those who have a lot of condom-less casual sex ‘deserve’ to get HIV. I don’t judge anybody but I don’t want to be put in that category. I’m not ashamed of being HIV positive, but it does affect how people perceive you if they don’t know you.”

Robert has told around ten partners about his status when they’ve asked about barebacking. “I don’t have unprotected sex unless we are both aware of our status,” he says. Even so, he says it’s still common for HIV positive guys to be afraid to disclose their status to others in the same position: “I’ve even met positive guys who I’ve been honest with, but they have lied about being positive because they don’t want to say they are.”

It’s upsetting to think that we are forcing so many thousands of gay men into a situation where they feel alienated by their own community. It takes a strong person to rise up against a tide of possible condemnation and be among the first to speak up.

Luke lost friends after going public about his diagnosis. People stopped answering his calls. He believes it was because they were afraid to be associated with somebody that was openly HIV positive. Similarly, when he confided in a friend about his status, she was more concerned that she’d shared his wine glass than how Luke was feeling. (Incidentally, if you labor under similar misconceptions, HIV cannot and ​will not be spread by sharing glasses.)

Sadly, despite it now being considered to be a very manageable long-term health condition, HIV is still widely misunderstood. “You can sit on a park bench and talk for two hours with someone about your diabetes,” Luke says. “But you can’t do that with HIV because you’ll often get a look of fear and shock.”

Niyi eventually reached a point when he had enough of feeling ashamed. “I woke up one day and was like, life isn’t always going to be easy. Self-pity isn’t fierce and it isn’t fun. Doing things and being around people that encouraged me to feel good about myself was such a big help.”

There is one hurdle that remains for him, though, and that’s relationships. He’s been single for seven years. “The thought of being rejected by a guy because of it terrifies me. I feel that it will always hold me back until I am able to get past that final fear.”

James has been luckier in love. He met his boyfriend 18 months ago and they married last August.

Niyi, Luke and James are heroes!  They have decided that it’s time to challenge the stigma that looms around HIV for no other reason than people are not talking about an issue that affects us all. The education system is broken, so they’ve taken it upon themselves to speak out about it. They have taken a situation that could have stripped them completely, that could, if they let it, absolutely define them, but instead have turned it into something powerful.

As his fears subsided, Luke was inspired by another HIV activist and started blogging about his experience. “It got a lot of attention. I wanted to help people understand and it was a feeling of empowerment. The good reactions that followed confirmed it was the right thing to do,” he says. He now also writes monthly about the subject for Gay Times.

Niyi agrees. “There are so many people suffering unnecessarily because they feel that being HIV nullifies everything good about who they are, but it really doesn’t. Everybody deserves to wake up feeling like they are of value and if all I have to do is talk about my situation in order for people to see that, then that’s what I will do. People need to know that someone’s HIV status is not an indication of what kind of person they are.”

Story via Vice

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Introducing the Shooting Challenge!

Throwing out the trash – by Tom Robson

World AIDS Day, observed on 1 December every year, is dedicated to raising awareness of the HIV pandemic caused by the spread of HIV infection.

Around 100,000 are currently living with HIV in the UK and globally an estimated 34 million people have HIV. More than 35 million people have died from the virus, making it one of the most destructive pandemics in history.

Today, stigma and discrimination remain a reality for many people living with HIV and this year, Leicestershire AIDS Support Services will showcase artistic works at an exhibition between 29th November and 17th December at Apex House Gallery, Leicester to remind the public and local government that HIV has not gone away. There is still a vital need to raise money, increase awareness, fight prejudice and improve education.  (More on this will be announced this week).

Part of the exhibition will focus on photography and participants in the shooting challenge are invited to exhibit their work.

Each Monday, we’ll set a theme and ask you submit a photo for inclusion, we’ll consider the photographs over the weekend and pick winner then announce it on the following Monday as we set the next weeks theme.

You don’t need an expensive camera or fancy equipment, we’re simply looking for the pictures you can produce so get your smartphone out and join in if you don’t have a camera!

THE BRIEF:

For our first Shooting Challenge let’s keep it easy, we want you to simply photograph anything, provided there’s a reason for it relating to HIV and what it means to you. It could be that of community, an image depicting HIV medicine, a red ribbon, fear or sigma you name it! Your photo could be thought-provoking or humorous, colour or monochrome, have a ‘message’ or just be a great shot that tells a story without any words.

THE EXAMPLE

Initially, our example photo is tongue in cheek, yet as you gaze closer into the image you begin to question why the person is sitting in the bin, why are used condoms on her and why is her face blurred? This is a statement about social stigma. That society rejects HIV positive people, not unlike the way people casually toss away used condoms. Does the unidentified face indicate a desire to remain hidden or is she shaking her head furiously saying ‘No – I’m sick of being treated like dirt’.

This is obviously a staged photo, with a ½ second exposure time in order to achieve a blur in the face of the character. This image was taken with a Canon 650D, f/22 (ISO100).

THE RULES:

• Follow the brief
• Send your best photos by 6PM on Friday 31st October 2014 with “Shooting Challenge” in the subject. We’ll announce the winner on Monday 3rd November as we set the theme for next week’s shooting challenge.
• Email submissions to photography@lass.org.uk
• Submissions must be your own work.
• Photos must be taken after the challenge was published; so no existing shots please.
• Explain briefly in your submission email the equipment, settings, technique used and the story behind the image/images.
• We will of course credit you so if you have a website or twitter handle, let us know! – If you’re happy for us to use the images elsewhere on our site – do let us know!
• Save your image as a JPG, and use the following naming convention FirstnameLastnameEasy.jpg
• Anyone can enter, regardless of camera gear, or location!
• The most important rule — HAVE FUN!

HIV DOES NOT EXIST!!

Did that grab your attention??  We hope so!

Many of our readers are fluent in ‘HIV speak’, our service users, volunteers, partner agencies and the many people who subscribe to our blog and follow us on twitter.  We don’t need to be told that HIV doesn’t exist because we know it does and have first-hand experience of the condition.

You could argue that within our industry, we have blinkers on, we see people infected and affected by HIV on a daily basis, we support people and we advocate.  We assist when people are victim to prejudice and stigma.  We offer emotional support to people when they need it most and we research the condition.

Yet for some people, it’s hard to believe that HIV is a real condition.  Some people believe that the HIV virus and its associated medical paraphernalia is a fabrication by pharmaceutical companies to create expensive drugs and keep people using them.

Others believe that HIV already has a cure, but this is being kept secret in order to keep the drug companies (i.e. Big Pharma) in business.

HIV/AIDS denialism is the belief, contradicted by conclusive medical and scientific evidence HIV does not cause AIDS.  Some denialists reject the existence of HIV, while others accept that HIV exists but say that it is a harmless passenger virus and not the cause of AIDS.  Insofar as denialists acknowledge AIDS as a real syndrome, they attribute it to some combination of sexual behaviour, recreational drugs, malnutrition, poor sanitation, haemophilia, or the effects of the drugs used to treat HIV infection in the first place.

The scientific consensus is that the evidence showing HIV to be the cause of AIDS is conclusive and that AIDS-denialist claims are pseudoscience based on conspiracy theories, faulty reasoning, cherry picking, and misrepresentation of mainly outdated scientific data.  With the rejection of these arguments by the scientific community, AIDS-denialist material is now targeted at less scientifically sophisticated audiences and spread mainly through the Internet.

Despite its lack of scientific acceptance, HIV/AIDS denialism has had a significant political impact, especially in South Africa under the presidency of Thabo Mbeki.  Scientists and physicians have raised alarm at the human cost of HIV/AIDS denialism, which discourages HIV-positive people from using proven treatments.

What do you think about this? – Fancy a chat with the Skeptics?

“Skeptics in the Pub” are a group of people in Leicester who like getting together in a pub to have a few beers and talk about ‘nonsense’.

Each month, they find a speaker – typically a scientist or prominent sceptic who will speak for around 40 minutes.  The subjects of the talks vary, but they will typically be about a common belief that either cannot be justified by the available evidence, or that can actually be demonstrated to be false by the available evidence.

Examples of these subjects are:

• Alternative Medicine
• Psychics & Mediums
• Religious Beliefs
• Holocaust Denial
• Pseudoscience
• Creationism

The talk is followed by an informal discussion by all who attend and their next talk is about “AIDS Denialism” with Myles Power.

In the early days of the AIDS epidemic many bizarre and dangerous ideas were advanced regarding the origin of the disease and its cause. Since the discovery of the Human Immunodeficiency Virus (HIV) these conspiracy theories, which once filled the void left by the lack of information, have all but vanished. Over the past three decades HIV has been the subject of intense scientific research which has resulted in effective treatments, rapid HIV tests, and promising cures. Yet unbelievably there are a small number of people who are sceptical of the “official story”. Although these people are small in numbers they are extremely well funded and can pose a very real threat to public health.

In this talk Myles discusses some examples of the dangerous assertions in the documentary ‘House of Numbers’ and explains how they have led to the death and suffering of hundreds of thousands of people. He will also talk about the failure of the DMCA and how it can be exploited by the proponents of pseudoscience.

The talk is at 7:30pm on Tuesday, 19^th August at The Font (52 Gateway Street, Leicester)

So if you fancy the debate, why not pop along it’s sure to be interesting!

 

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Teens Don’t Know HIV Is a Sexually Transmitted Disease

A new study published by the MAC AIDS Fund shows a third of teens don’t know HIV is a sexually transmitted disease. Have the lessons of generations past been lost?

That’s the conclusion reading the results of a new survey put out by the MAC AIDS Fund (PDF). The online survey of about 1,000 teenagers was conducted this year by the communications firm Kelton, and does reveal some worrisome data about their attitudes and level of information about HIV and AIDS. Given its funding source, it makes sense that those facts would be the focus of the report. But taken as a whole, the results indicate that adolescents have a pretty good understanding of what choices are most likely to worsen their health over time.

The most startling and worrisome finding (helpfully highlighted by Vox) is that roughly a third of the respondents did not identify HIV as a sexually transmitted infection (STI). If a true reflection of teenagers’ knowledge of how HIV is spread, that number is troubling indeed. A 2002 study of youth at an urban clinic found that, despite spotty knowledge about STIs as a whole, HIV was identified as such by 91 percent, a larger number than identified any of the others. While a difference in study populations may account for some of that discrepancy between the two surveys, a drop to 67 percent in the span of a dozen years would be a precipitous decline in informedness.

Unfortunately, it’s difficult to know how much credence to give those findings. Unlike studies that typically appear in peer-reviewed journals, there is little information provided by Kelton in the report regarding the survey methods. While it’s certainly possible that teenagers have become drastically less informed about HIV than they should be, it’s hard to put aside skepticism about how solid those numbers are without seeing how the survey was worded.

Taking the numbers at face value, the survey finds that 88 percent of teenagers don’t perceive themselves to be at risk for lifetime HIV infection. In contrast, they are concerned about the risks of developing cancer (38 percent), diabetes (33 percent), heart disease (28 percent) and obesity (22 percent). Comparing the prevalence of HIV infection to mortality and obesity rates in the United States, those attitudes are actually pretty sensible. While 50,000 new HIV infections a year are far too many, on balance adolescents are at far more risk of developing those other health problems.

The survey reports that less than a third of respondents rated having unprotected sex as the most risky health behavior they could be engaging in. However, that’s still more than those who rated smoking or drinking (28 percent) or eating unhealthy foods (20 percent) as the riskiest. Without seeing the study’s methods, it’s impossible to know what those numbers really mean. Were respondents only given one choice or asked to rank several? Just because a teenager thinks drinking is the most risky thing she could be doing (which, given the effects of drinking on mortality, isn’t a crazy answer) doesn’t mean she perceives unprotected sex as being risk-free.

For an organization like the MAC AIDS Fund, it makes sense to look at the survey results and respond with alarm. Its focus is on HIV and AIDS, and the report certainly indicates that there is work to be done in communicating to youth about preventing infection. But when viewed as part of a bigger picture, it shows that teenagers have a good idea of what their long-term health risks truly are. Coupled with data showing decreased risk behavior among adolescents as compared to older generations, it’s actually rather encouraging.

What is truly discouraging are the numbers regarding new HIV infections among men who have sex with men (MSM), the group comprising the largest number of new diagnoses by far. Among MSM aged 13-24 years rates of new infections have actually risen over the past decade, while the overall rate of new diagnoses has dropped by 30 percent.  While medications like Truvada can be used to lower the risk of infection for those engaged in high-risk behaviors, that doesn’t mean attention to lowering those risks isn’t important.

Though reading of the report is that most teens have a good idea about the health risks they actually face, it remains important to inform adolescents about their risk of infection with HIV. The survey report contains no information about the respondents’ demographics beyond their ages, so it’s impossible to know how many fall into higher-risk groups. For those who do, giving them the information they need to lower that risk remains just as important as ever.

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10 things you need to know about the pill to prevent HIV

It’s been called, simultaneously, a medicine to “end the HIV epidemic” and a “party drug:” Pre-exposure prophylaxis, or PrEP for short, refers to a daily antiviral treatment that prevents HIV.

That’s right: People who don’t have the virus can take a pill a day to save themselves from getting infected.

Haven’t heard about PrEP? You’re probably not alone. The drug-maker, Gilead, doesn’t advertise Truvada (its brand name) for prevention, and the Centres for Disease Control and Prevention only endorsed it this past May—two years after it hit the market.

Want to learn more about PrEP, (click here).

Going forward, however, you’ll be hearing a lot more. On Friday, the World Health Organization backed the antiviral, recommending all HIV-negative men who have sex with men consider taking it as part of a strategy to reduce the global incidence of the disease. But there’s a lot more to the story. Here’s what you need to know:

1) Public health officials aren’t recommending this pill for “all gay men,” despite what the headlines say

The pill is “for people who do not have HIV but who are at substantial risk of getting it,” according to CDC guidance. “At substantial risk” means you regularly have unprotected sex with partners of unknown HIV status. This can include men who have sex with men, heterosexual men and women, injection drug users, sex workers, and people in couples with an HIV-positive partner. In other words, not simply “all gay men.”

The latest headlines about Truvada were so misleading that the WHO had to issue a clarification noting that they support PrEP “as an additional choice”—again, not for all men who have sex with men.

“We know from surveillance that condom use is not as high as is necessary to control the epidemic”

2) Truvada is not a condom replacement

Public-health officials are not endorsing Truvada as an alternative to other forms of protection. “We are suggesting that for people who are already not using condoms, we have another option to help protect them from HIV infection,” says the CDC’s Dawn Smith, biomedical interventions implementation officer. “It’s part of being practical and realistic.” So the hope is that those who get prescriptions are folks who just aren’t using anything to protect themselves. “We know from our surveillance systems that condom use is not as high as is necessary to control the epidemic,” Smith added.

3) We don’t yet know exactly how the drug will be used in real life

Still, this public-health message hasn’t stopped some activists and AIDS campaigners from worrying aloud that the pill will undermine traditional advocacy messages about condoms—especially at a time when HIV infections are on the rise among gay men. And the truth is, we don’t yet know what kind of impact PrEP will have on people’s behaviour.

To find out, there are now “demonstration trials” being run around the world. These will look at how Truvada works outside of clinical trials, the impact of non-daily use of the drug, and whether the antiviral encourages more risky sexual behaviour or leads to an increase in other sexually-transmitted infections.

4) We do know Truvada only works effectively when taken every day

A three-year clinical trial of PrEP in HIV-negative men who have sex with men found that users got much more protection when they took the drug every day. Participants who took the drug less than half the time had a 50 percent reduction in HIV acquisition; daily users cut their risk by more than 90 percent. These results have been supported by other studies in a range of populations—from injection-drug users to heterosexual men and women. The trouble is, most people don’t take their medications as their doctors prescribe.

Drug-resistant strains of HIV have emerged when people with acute, undetected infection were given Truvada

5) Truvada can cause drug-resistant HIV infection

Drug-resistant strains of HIV have emerged when people with acute, undetected infection were given PrEP. This means they were positive when they started the medicine, but levels of the virus in their blood were hardly detectable because their infections were so new. They hadn’t made enough antibodies to show up in a test and so they were prescribed the drug anyway.

There’s some question about how serious this risk is for individuals and public health. For now, doctors are asked to confirm the HIV status of patients and to do follow-up and re-testing throughout treatment.

When asked how much of a concern drug resistance is, Smith of the CDC said, “We don’t know yet. That’s one of the things we’ll learn as the first few demonstration projects begin telling us.”

6) Besides that, it’s pretty safe

Though Truvada for the prevention of HIV was only licensed by the Food and Drug Administration in 2012, it was first authorized in 2004 to treat HIV positive patients. That’s right: the same drug used for these two purposes. Since it has been on the market as a treatment for over a decade—with very minimal side effects and harms—doctors are pretty confident in its safety profile for preventative use. There seem to be few side-effects with Truvada for prevention, the most common one being nausea.

People have been slinging the term ‘Truvada whore’ around, and the head of the aids healthcare foundation called the pill a ‘party drug’

7) “Truvada whores” are a thing

Because of the questions about whether PrEP will cause people to have risky sex and ditch condoms, there’s some related stigma in the gay community. People have even been slinging the term “Truvada whore” around, and the head of the AIDS Healthcare Foundation called Truvada a “party drug.” In response, one PrEP activist created a #TruvadaWhore t-shirt campaign to reclaim the word.

Many have pointed out that this divide parallels the early days of the birth control pill and suggestions that the medication would encourage promiscuity.

8) Uptake has been slow—but that’s not the full story

According to data from the drug maker Gilead, by March 2013 there were approximately 1,774 people in the US taking the drug. But it’s important to put this number in context. First of all, these findings were not published and peer-reviewed; they were presented at a scientific conference last year. When studied, we’ll have a better picture of the PrEP landscape and it may look quite different.  Secondly, Truvada has only been on the US market for prevention since 2012, a year after these numbers were gathered. It often takes decades for innovations to penetrate a market, especially in the conservative field of medicine.

9) The drug is expensive

Without insurance, Truvada can cost up to $14,000 a year, according to the CDC. But for most people, it is covered in their insurance programs and there’s only a co-pay. There are also medication assistance programs across the US for the uninsured that will cover the entire cost of the medication.

10)  HIV remains a socio-economic crisis around the world

Globally, men who have sex with men, prisoners, injection-drug users, and sex workers are still the groups most affected by HIV.

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