Monthly Archives: March 2012

Yoga Session Brings in £650 for The Global Natural Health Care Trust

It can be easy and pleasurable to generate funds to help support HIV work, both in the UK and Africa.  The following story is an example of how Yoga classes, an Auction and a Barbecue can help raise money for good causes.

The Global Natural Healthcare Trust (GNHCT) are a UK based registered charity founded by Cornish local Annette Montague-Thomas.  Annette has over 25 years experience in Africa where she has worked for UNICEF in Nairobi in Kenya, and in the past 9 years has been assisting young children who are afflicted and affected by the HIV/AIDS pandemic in South Africa.  Overseas, they are based on The Orange Farm informal settlement which is about one and a half hours South of Johannesburg.

The settlement is home to over 4 million Africans of varying tribes. The settlement is not only the largest in South Africa, but in the whole of Africa. It is fair to state that not even one quarter of the residents have any work and many are surviving at near starvation level.  They live in abject poverty with homes that are usually no more than shacks with no sewerage system.  Many of the homes don’t even have running water.

A recent event by “Yoga Rocks” at Lusty Glaze Beach raised £650 for he Global Natural Health Care Trust and this money will help support the charity’s work in Africa to help people affected by HIV.

The evening of yoga classes with some of the UK’s top teachers included a charity auction and a barbecue provided by chefs at Lusty Glaze and enjoyed by more than 150 people.

The charity runs a herbal clinic in the country’s worst-affected area, helping to save lives on a daily basis as well as providing homes for more than 10,000 orphans in its foster care system.

Yoga Rocks’ founders are yoga teacher Rhoda McGivern, Debbie Luffman from Finisterre and Gemma Ford from Love Yoga Online.

Mrs McGivern said: “The atmosphere was so lovely, we can’t believe how many people turned up on a rainy Monday evening to help us to raise money for a charity so close to our hearts.”

They have thanked everyone who volunteered to make the event happen, especially the team from Finisterre whose energy and enthusiasm were “simply amazing”.

The Yoga Rocks’ team is organising future events to be held in various venues around Cornwall, with potential venues also in London and America.

To offer help, please contact rhomcgivern@gmail.com or visit their websites:

Original article compiled from the above sources and thisiscornwall

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Spoof Tube Announcements Prompt to ‘mind the gap’ over HIV testing

HIV and sexual health charity Terrence Higgins Trust has partnered with GaydarRadio to create a series of spoof public transport announcements, encouraging gay and bisexual men in London to ‘mind the gap’ between their HIV tests.

The announcements, which can be found at Terrence Higgins Trust’s YouTube channel, have been launched to promote the charity’s new campaign Mind the Gap and are voiced by GaydarRadio’s breakfast show presenters Neil Sexton and Debbie Ryan.

They contain references to London’s gay scenes in Soho and Vauxhall, with one advising: “You are now approaching Old Compton Street. Alight here for cocktails, Lady Gaga and an altercation with a drag queen in a kebab shop at 3am – and boys, while you’re at it, remember to have an HIV test at least once a year to ensure there’s a good service running on all lines.”

Gay and bisexual men remain the group most at risk of contracting HIV in the UK, with one in seven men on the London gay scene living with the condition. Current guidelines recommend that men test for the virus at least once every twelve months, with more frequent testing recommended for anyone who has had unprotected sex or experiences symptoms of sero-conversion illness.

Have you ever had a HIV test?

If you’re interested in having a HIV test, we offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

If you’re not from Leicester, or prefer to use a different service, the Terrence Higgins Trust operates a clinic finder with details of clinics across the UK, including its own rapid testing services, at www.tht.org.uk/clinics.

Robin Crowley, Programme Controller at Gaydar Radio, said: “Terrence Higgins Trust’s Mind the Gap campaign reinforces the importance of being tested regularly for HIV in a fun and entertaining way. That’s why GaydarRadio’s breakfast team, Neil Sexton and Debbie Ryan, are perfect as the voices for Mind the Gap, delivering a comedy element to this very important message.”

Cary James, Head of Programmes at Terrence Higgins Trust, said: “We want these announcements to make guys laugh, but we also hope they’ll make them think. For gay and bi men, testing has never been easier, yet a quarter of men with HIV don’t know they have it. That’s thousands of men across London who are putting their health at serious risk. We’re hugely grateful to Gaydar Radio for donating their time and talent to support the project, and hope the campaign will encourage more guys to mind the gap between their HIV tests.”

The ‘Mind the Gap’ campaign, funded by the Pan-London HIV Prevention Programme, will provide information via adverts in gay media, posters in gay venues, and through promotional Oyster card wallets to be handed out across the gay scene.

Original Article via PinkNews.co.uk

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Teaching HIV/AIDS Denialism?

An Italian university is investigating whether a professor was right to teach a course denying a causal link between HIV and AIDS.

Marco Ruggiero does not believe that HIV causes AIDS. Image credit: M. Ruggiero

The University of Florence has launched an inquiry into the teaching activities of an academic who assisted on a course that denies the causal link between HIV and AIDS, and supervised students with dissertations on the same topic.

The Italian university’s internal ‘special commission’ will examine the “teaching behaviour and responsibility” of molecular biologist Marco Ruggiero, a university spokesman told Nature.

The move follows a letter to the institution’s rector, Alberto Tesi, by an Italian campaign group called the HIV Forum, which represents people infected with HIV and others concerned about the disease (view this letter here).  It calls on him to disassociate the university from the “science and activities” of Ruggiero, who, the group says, is “internationally known” for denying the widely accepted link between HIV and AIDS, and promotes a potential cure for HIV involving an enriched probiotic yoghurt for which there is no proven evidence.

Tesi replied on 29 February to announce the special commission. This “will examine whether professor Ruggiero’s conduct complies with the institutional guidelines on teaching contents and adherence to the objectives of the official curriculum of biological sciences”, says university spokesman Duccio Di Bari, who adds that any misconduct would be dealt with internally. The commission comprises Elisabetta Cerbai, the university’s vice-chancellor for research; Paola Bruni, the dean of the School of Science; Sergio Romagnani, an emeritus professor and expert in immunology; and Massimo Benedetti, who is responsible for university legal affairs. They will hold hearings behind closed doors.

Death Denial

The investigation is the latest twist in the fallout from a paper published in December in the Italian Journal of Anatomy and Embryology (IJAE) by researchers including Peter Duesberg, an academic at the University of California, Berkeley, well know for denying the link between HIV and AIDS. The paper, which challenges estimates of HIV–AIDS death tolls in South Africa, has received heavy criticism from scientists, who have questioned how it could have passed peer review, and has led two members of the IJAE editorial board to resign in protest (see ‘Paper denying HIV–AIDS link sparks resignation on Nature.com‘). That Ruggiero was one of the paper’s nine co-authors prompted the HIV Forum to write to the rector.

The forum cites two student dissertations (J Branca and C Matteuzzi) mentored or co-mentored by Ruggiero that argue against the consensus that HIV causes AIDS. “Most available evidence does not support a causative role for HIV in AIDS,” they both conclude.

The HIV Forum also refers to a short elective course, consisting of two half days, which is understood to have run twice in the 2010/11 academic year, and which Ruggiero collaborated on, entitled: ‘The revolution of immunotherapy: prospects for the treatment of cancer and AIDS’. According to the description, the course teaches “the role of HIV in the pathogenesis of AIDS; association but not causation”.

“What devastating effects can such false teaching have on future physicians and their patients?,” asks the HIV Forum, stressing that although academic freedom is fundamental in teaching and research, it should not be misused to spread theories that they say are “lacking any scientific evidence”.

“We hope the Commission will be scientifically rigorous and we hope that it will state that the best way to protect academic freedom is to teach according to the worldwide recognized scientific method,” says a forum spokesperson.
Parallel lines

Ruggiero, whose supporters have also written to the rector, says he has always operated with scientific integrity and is confident he will be able to give any explanations that the committee asks for. He draws parallels with an inquiry the University of California held two years ago into the conduct of Duesberg, which resulted in no charges.

“Florence is famous for having been the city of Galileo Galilei, the worldwide recognized symbol of the predominance of scientific freedom over dogmas. I am convinced that freedom of teaching and research is a stronghold of our university system,” he says. He adds that the student dissertations and the course were approved by the university.

The commission was welcomed by Fabio Marra, a professor of medicine at the university, who says the institution must shed “full light on the events”.

“I believe that every researcher has the right to submit his or her work through peer-reviewed journals, no matter how little credibility that data may have,” Marra says. “What is not acceptable is that personal theories, that are not supported by the weight of evidence, are taught to students that do not yet have the skills to form an independent opinion and to discriminate what they are being taught from what the bulk of the literature has shown.”

The special commission is due to report by 15 April.

Original Article by Zoë Corbyn at Nature.com

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Magic Johnson – The Announcment

Magic Johnson is a retired American professional basketball player who played point guard for the Los Angeles Lakers of the National Basketball Association (NBA).  After winning championships in high school and college, he was selected first overall in the 1979 NBA Draft by the Lakers.

He won a championship and an NBA Finals Most Valuable Player Award in his rookie season, and won four more championships with the Lakers during the 1980s

After a physical before the 1991–92 NBA season, Johnson discovered that he had tested positive for HIV.  In a press conference held in November, 1991 he made a public announcement that he would retire immediately and stated that his wife Cookie and their unborn child did not have HIV, and that he would dedicate his life to “battle this deadly disease”.  He went on to play on the 1992 gold medal Olympic Team and said he considered a comeback, but was disheartened when other players said they were scared they would contract the virus from his blood.

At the time, November 1991, his decision to announce his diagnosis to the world was considered exceptionally brave, since HIV/AIDS was heavily stigmatised to a greater degree than today.  Magic’s campaigns were pivotal in demonstrating to the world that the risk of infection was not limited to a specific creed of people.  Magic stated that his aim was to “help educate all people about what HIV is about” and teach others not to “discriminate against people who have HIV and AIDS” and when Johnson announced he had the virus, people started to realise the disease could – and was – affecting anyone.

The announcement became a major news story in the United States, and in 2004 was named as ESPN’s seventh most memorable moment of the past 25 years.  Many articles praise him as a hero, and former U.S. President George H. W. Bush said, “For me, Magic is a hero, a hero for anyone who loves sports.

After announcing his HIV status he created the Magic Johnson Foundation to help combat HIV and later, diversified the foundation to include other charitable goals.  In 1992, he joined the National Commission on AIDS, but left after eight months, saying that the commission was not doing enough to combat the disease.  He was also the main speaker for the United Nations (UN) World AIDS Day Conference in 1999 and has served as a United Nations Messenger of Peace.

Twenty years on and the former NBA great still devotes much time and effort to raise money for research and is an inspiration to many.  He remains a living face for HIV education and activism and for many, is an inspiration to HIV positive individuals and their friends and families.

He said he never considered not coming forward with the details of his diagnosis, because he wanted to be a face to help de-stigmatise  the virus and raise awareness for the less famous or privileged victims dying daily.

Johnson is still reportedly in good health, which he credits with Anti-HIV medicine, exercise, and a great support system.

He travels nationwide giving motivational speeches and works with public officials from the UN and international AIDS foundations to fight for policy, awareness and clinics that benefit victims worldwide. Though he says he is sometimes reminiscent of his basketball days, he is most proud of his accomplishments off the court to help fight the battle against HIV/AIDS.

Today, Twenty years after contracting a disease that was supposed to kill him, Magic Johnson is killing the disease by using his celebrity to raise millions for HIV/AIDS research.

The Announcment” is a documentary, directed by Nelson George and narrated by Magic Johnson and is Magic’s second film on HIV (The award-winning “Life Support” for HBO in 2007, starring Queen Latifah is the first).  He said, “For me, “The Announcement” is not just a look back at a fraught, unforgettable moment in U.S. history, but a vehicle for re-introducing the subject of HIV/AIDS to an audience that may not know that [people] are still getting infected and, yes, still dying from this big disease with a little name.

Article collated from Wikipedia, ESPN Films, TSN and Positivelife.

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HIV Infection Increases Risk Of Brain Shrinkage

Results from a small study indicate that certain regions of the brain become significantly smaller in people with HIV. The findings also show that this reduction in brain size occurs even when the HIV infection is well controlled with antiretroviral therapy.

“What we saw was that HIV does affect the brain, and it shrinks areas of the brain,” said Dr. Beau Ances, an assistant professor of neurology at Washington University at St. Louis and lead author of the study. “These areas were just as small in HIV-positive individuals who were and who were not on [antiretroviral] medications,” he added.

Results from the study also suggest that age and HIV infection independently lead to lower brain volumes.

“In particular, we looked at an area that’s very deep in the brain, called the caudate nucleus. We know that the caudate nucleus, which controls some motor movement and planning, is sometimes affected with HIV. We saw that there was an effect of HIV and that there was an effect of aging, but no interactions between them. It looked like HIV aged the brain by about 15 or 17 years or so,” said Dr. Ances.

According to the study authors, results from this exploratory study suggest that administration of neuro-protective therapy may help prevent brain damage in HIV-positive individuals. Dr. Ances noted that the drugs selegeline (Deprenyl, Carbex), minocycline, and valproic acid (Depakote) are neuro-protective agents that have been tested in people with HIV. Results so far have shown no improvement, but he pointed out that starting treatment earlier, before any significant impairment, may be beneficial.

Dr. Ances also noted that previous studies have shown that antiretroviral drugs differ in their ability to reach and penetrate the brain. “HIV gets into the brain and stays in the brain. Are there ways that we could get more of the antiretrovirals into the brain so that we could knock down the virus?” said Dr. Ances. He added that trials are under way to determine the effects of higher and lower penetrating antiretrovirals on brain structure and function.

However, the authors cautioned that larger studies in people with acute and chronic HIV infection are required to more thoroughly understand the effects of HIV on the brain.

Dr. Ronald Ellis, an associate professor of neuroscience at the University of California, San Diego, who was not involved in the study, added that physical exercise might help maintain brain function. “There is a growing body of evidence in non-HIV infected individuals showing that physical exercise benefits the brain. And for that reason, people with HIV may consider using exercise as a way to preserve their brain structure and function,” he said, though he cautioned that this conclusion was speculation.

Previous studies have shown that HIV infection can affect brain function, resulting in lower cognition (see related AIDS Beacon news). In addition, several factors such as aging, vitamin B12 deficiency, or a stroke can lead to the death of nerve cells in the brain, resulting in brain shrinkage (called atrophy).

According to the study investigators, toxic products made by the virus are thought to cause much of the damage observed in the brain. However, the authors noted that HIV-positive individuals continue to show evidence of brain shrinkage and dysfunction despite the advent of highly active antiretroviral therapy (HAART).

As a result, several aspects of HIV infection may be involved in brain impairment. For example, it is possible that long-term exposure to antiretroviral drugs, such as Sustiva (efavirenz), could have toxic effects on nerve cells in the brain. In addition, as the immune system recovers during antiretroviral therapy, brain cells may experience immune-mediated damage.

In this study, researchers aimed to understand the individual effects of HIV infection, HAART, and age on brain size and function. The authors also investigated whether changes in brain volume can serve as a reliable indicator of structural damage in the brain.

A total of 78 individuals participated in the study. A third were HIV negative, a third were HIV positive but had never been on HAART (HAART naïve), and a third were infected and on HAART.

The researchers recorded several HIV-related parameters for each participant, including time since infection, viral load (amount of virus in the blood), and current and lowest recorded (nadir) CD4 (white blood cell) counts.

The average age of HIV-positive, HAART-naïve individuals was 37 years old. About 92 percent were male, and the average duration of HIV infection was three years.

The average age of HIV-positive individuals on HAART was 40 years old. Nearly 85 percent were male, and the average duration of HIV infection was 10.5 years.

HIV viral load was lower and CD4 counts were higher in individuals taking HAART compared to HAART naïve participants. However, the lowest recorded CD4 counts were lower in participants on HAART, possibly due to a longer average duration of infection.

The authors used magnetic resonance imaging (MRI) to estimate the volume of specific regions of the brain. Participants’ responses to a set of questionnaires were used to assess their cognitive function.

After recording initial measurements, 46 percent of the HAART-naïve participants started HAART and all parameters were recorded again after six months of antiretroviral therapy. This data was used to assess the short-term effect of HAART on the brain.

Results from the study showed that HIV-positive individuals performed worse on neuro-psychological tests, as compared to uninfected individuals. Among the HIV-positive participants, HAART-naïve individuals and those taking HAART performed comparably on the tests.

MRI data also showed that HIV-positive individuals, regardless of their HAART status, showed significant reduction in the volume of three specific brain regions – the amygdala, the corpus callosum, and the caudate.

The amygdala is thought to be important in the processing of emotional reactions. The corpus callosum helps the left and right halves of the brain to communicate with each other, and the caudate is involved in learning and memory.

The researchers found that the caudate volume was affected by both HIV and aging. They estimated that HIV infection was associated with a 6 percent reduction in caudate volume for each decade of infection, while aging was associated with an additional 4 percent reduction per decade.

The authors estimated, using modeling techniques, that the caudate volume likely declines gradually for about 13 years after HIV infection, after which it reaches a steady state. Overall, they concluded that the effects of HIV infection on caudate size are equivalent to those of 17 years of aging.

When HAART was introduced in HAART-naïve individuals, viral loads were significantly reduced and CD4 counts increased after six months of therapy. However, the authors observed no change in caudate volumes.

For the corpus callosum and the amygdala, only HIV, and not aging, had an effect on size. Study participants with HIV had a corpus callosum that was an average of 8 percent smaller than participants without HIV, and an amygdala that was an average of 7 percent smaller.

There was no association between reduction in brain volume and viral load or current or lowest CD4 counts. The researchers noted that this result contradicts those from previous studies, which suggested that brain impairment is associated with low nadir CD4 counts (see related AIDS Beacon news).

For more information, please refer to the study in the Journal of Acquired Immunodeficiency Syndrome (abstract).

Original Article via The AIDS Beacon

Every March, Brain Awareness Week (15 – 19 March) unites the efforts of partner organisations worldwide in a celebration of the brain for people of all agesIt is the global campaign to increase public awareness of the progress and benefits of brain research.

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Teenagers Born With HIV Tell of Life Under Society’s Radar

HIV virus

The HIV virus under a microscope. Photograph: Institut Pasteur/AFP/Getty Images

HIV-positive youngsters who were infected before or at birth reveal their secret lives.

Clive was nine years old when he discovered he was HIV positive. The devastating news that his mother, doctors and support workers had spent years preparing to break to him in the gentlest manner possible, was blurted out by a careless receptionist at his local hospital.

“My mum had bought me to see the doctor because I had earache, and this woman just read it out loud from my notes as she was typing my details into the computer,” says Clive, who celebrated his 18th birthday last week. “I remember standing there, with my mother’s hand around mine, as these feelings of complete confusion and fear washed over me.”

Clive credits the medication given to his mother during her pregnancy for protecting him then from her HIV infection. But, he says, something went catastrophically wrong at the point of delivery, and the infection was passed into his own bloodstream.

After that day at the hospital, however, Clive refused to take medication on his own behalf. “I suddenly realised that the pills my mum had been giving me every day – that I had thought were sweeties – were medicine,” he says. “After that day at the hospital, I would lock myself in the bathroom when my mum took them out of the cupboard. Or I’d pretend to swallow them, then throw them away.”

Clive’s resistance to taking medication became more deep-rooted as he grew up. “The medication makes me feel sick – I was sick every time I took it from 10 to 13 years old. Other times, I just don’t want to remember that side of me. I want to be normal.”

He shrugs sheepishly. “The last time I stopped taking them was because I broke up with my girlfriend and I had other things on my mind.” Clive takes his pills sometimes, he says, but then stops for months at a time. “I know I’m killing myself,” he says truthfully, but with studied nonchalance. An exuberant teenager, full of life, he laughs at my shock. Pulling his homburg hat to a jaunty angle, he throws a caricatured “oh, poor me” puppy dog stare.

But there’s nothing funny about Clive’s attitude towards his HIV status. A decade of sporadic adherence to his drug regime has stunted the teenager’s growth. It has left him close to death three times, and caused him to develop resistance to a number of the drugs that could have almost guaranteed him a long and healthy life. “I was in hospital again in January,” he says, absently drumming a jazz riff on the table in front of him. “But my hospital visit before that was the worst: I got pneumonia after stopping taking my meds. My CD4 count [cells that help fight infection] was down so low that I was basically dead.”

There are around 12,000 children like Clive in the UK and Ireland: young people living with perinatally acquired HIV, contracted from their mother in the womb, at the point of delivery or shortly after birth, while being breastfed.

They are a hidden group. Fiercely protected by a medical profession that never expected them to grow from babies into children, much less teenagers, they seek to exist under society’s radar, to avoid being branded by the stigma that it attaches to HIV. Over a number of months, however, many of these young people – and HIV-positive women who have had children of their own – told the Guardian their stories for the first time.

This group of young people are a singular demographic produced in the few years before medical innovation had caught up with real life. The breakthrough in the 1980s of Haart – highly active antiretroviral therapy – gave these children the chance of a normal lifespan. It also reduced the chance of women with HIV passing the disease on to their babies from around 20-30%, to under 1%. Today, says Pat Tookey, who manages the National Study of HIV in Pregnancy and Childhood (NSHPC), the comprehensive, anonymised surveillance of all obstetric and paediatric HIV in the UK and Ireland, there is “a vanishingly small chance giving birth to an HIV-positive baby, if medication is taken from the point of conception and all interventions are followed”. “Thanks to the fact that an HIV test is routinely recommended to all pregnant women during their antenatal care, most with HIV are diagnosed in time to take up interventions,” she says.

But there was a time lag before Haart reduced the likelihood of transmission between mother and baby so dramatically, and when infected babies were still being born. The seismic shift that happened in these few years was that these HIV-positive babies were, for the first time ever, being born into a world where they were able not just to survive, but to thrive.

“In earlier days, most babies with HIV had a short life and our task was to make the quality of that life reasonable,” said Diane Melvin, a consultant clinical psychologist at St Mary’s hospital in London. “We never expected these babies to live. They were certainly not expected to survive adolescence.”

But that is exactly what they are now doing. Of the 1,200 children born with HIV and living in the UK and Ireland today, just 60 are under four years old. Around 400, in contrast, are aged between 10 to 14, and another 300 are between 15 and 19. Contrast this to the 1980s, when the first infected babies were born. “There was no treatment in the early days,” remembers Tookey. “The babies used to turn up with a symptomatic disease and die.”

For the first time, doctors are daring to hope that children born with HIV can have a normal life expectancy, provided the drugs work and any issues around resistance are solved. “But this is just an assumption,” warns Tookey, “We can’t be sure of the future because the virus is good at developing resistance to specific drugs, and none of these children have ever lived into middle – or older age.”

Despite medical caution, however, the first cohort of teenagers born with HIV shows every sign of rude health. In what must be the most under-celebrated triumph of modern medicine, in the last two years, the oldest survivors of childhood HIV have grown into young adults.

It is a group that comes in all shapes and sizes: some have problems, some are doing well, some are even starting on their own families. What they all share, however, is the desire to live as normal a life as possible.

“Society forces me to live two lives, one of which – the one where I’m honest about my status – I have to keep completely secret from the other one,” says Clive. “It angers me that HIV is considered such a dirty thing by so many people. Why are people more sympathetic to those with cancer than those with HIV? It’s partly because I have to live this life of shame and secrecy that I find it so hard to take my meds.”

Other young people admit that the stigma of their disease exacerbated their teenage predilection to risk-taking behaviour. “From the age of five to 17, I had to take 23 tablets a day, and I had to do it in secret because of the ignorance in school and society as a whole,” says Pauline, now 24. “I got to a point where I had just had enough. I just wanted to block HIV out of my life. I didn’t take my meds for a year and a half. Eventually, I was ill for four months, then I lost a stone in three days and couldn’t get out of bed. I couldn’t breath, my heartbeat was crazy. I thought that was it.”

Pauline alerted a friend, who drove her to hospital, where she spent a week in intensive care. Pauline, who has a young – and uninfected – son of her own, is now a mentor for other HIV-positive children. Asked about the problems faced by children growing with HIV today, she angrily says that, “from what the young people tell me, the situation around HIV in schools and society in general hasn’t improved at all.

“It doesn’t occur to people that you can be born with HIV and live a normal life,” she adds. “The result is that some of these children go down the same spiral I did and end up in hospital.”

Other teenagers with perinatally acquired HIV, however, refuse to let the disease define them. They take their meds and forge ahead, living confident and strong lives.

Cheerfully tucking into cheesecake while describing her plans for the future, Martha makes a claim that is barely believable. “If I could live my life again and not be positive, I wouldn’t want to,” the 20-year-old announces, giggling at the astonishment – and disbelief – that I fail to wipe quickly enough from my face. “It sounds weird, I understand that,” she acknowledges. “But I’ve achieved more things by being positive than I would have if I had been born negative. It’s made me a much more educated person and put some amazing experiences in my path.”

Martha reels off a windfall of opportunities that have come to her, courtesy of her HIV status. “I have spoken at three international Aids conferences, presented at three Children’s HIV Association (Chiva) conferences, met MPs, been a mentor to other young people born with HIV, and have written magazine articles for Positively UK [a peer-led support group for HIV-positive people across the UK].” She pauses for breath. “If someone offered me a cure, I might take it,” she concedes. “But not definitely. HIV is a really small part of my life. I have HIV; HIV doesn’t have me.”

Even Martha, however, admits that children born with HIV struggle against far greater odds than those growing up with other perinatally acquired diseases. “I’m angry about the stigma in society that makes me have to lie about my status,” she admits. “It should be like having a heart disease or high blood pressure. What I want people to know is that we’re living normal, healthy lives. We’re alive: we were not supposed to be.”

The continuing fear and ignorance about HIV in society, however, continues to make it necessary for young people to lead double lives, despite the damage that can it do to them.

A recent survey by the National Aids Trust found that one in five adults do not realise the disease can be transmitted through sex without a condom. Fewer than half believe it can be passed by sharing needles or syringes. Around 10% believe it can be transmitted through kissing and spitting – an increase of 100% since 2007.

The stigma that society places on HIV has another, even nastier knock-on effect: it means that children cannot be told of their diagnosis until they are judged to be able to keep it confidential.

The consequence of this is that unlike other childhood diseases, children born with HIV often learn of their diagnosis after they have already absorbed the fear and believed the lies about the disease that swill around society. The trauma can be deep and long-lasting.

In one comprehensive survey, a third of children with perinatally acquired HIV admitted to having considered killing themselves. There can also be a direct impact on a child’s lifelong adherence to medication. And this, of course, affects others: statistics show that young people with chronic conditions are more likely to report three or more than four simultaneous risky behaviours than healthy teenagers, including unprotected sex.

But even for those children who adjust well to their status, taking medication is not simple. Nor is hiding it from others: some young people have to take 12 different pills, three times every day.

It is a programme to which they must adhere with relentless precision. “For treatment to be effective, you need 97% adherence – to within two hours of taking the pill at the same time every day,” says Nimisha Tanna, from Body and Soul, a pioneering charity dedicated to transforming the lives of children, teenagers and families living with, or affected by HIV. “It is very important,” she adds. “Otherwise the virus wakes up, mutates and can become permanently resistent to the treatment you’re taking.”

Persuading adolescents to take their treatment seriously, however, isn’t easy. Just like any other teenager, their health is not their first priority nor organisation their strongest suit. Clinics dedicated to young adults with HIV are springing up to try to help this group.

But, says Dr Caroline Foster, a consultant in adolescent HIV at Imperial College healthcare NHS trust, problems can occur when such facilities are not available and 18-year-olds find themselves ejected from the paediatric care facilities they have attended since they were born into an adult facility, ill-adjusted to their specific needs.”Adolescent survivors of HIV are a new and challenging population,” says Dr Steven Welch, a consultant paediatrician at Birmingham Heartlands hospital. “The challenge is that, having got to the stage when we can enable young people to survive with HIV, we can also give them the quality of life to go with it. But this is entirely new territory for us all: paediatric HIV consultants have never had to deal with adolescents, or their parents. And how do we help a young person, for example, who is about to have their first sexual experience but already has a sexually transmitted disease?”

These are challenges the medical profession must surmount, however, because although about 98% of diagnosed pregnant women now take antiretroviral therapy, there are still at least 40 infected babies born in the UK every year.

It happens, says Tookey, for a range of reasons: the mothers sometimes lead chaotic lifestyles or have long-standing undiagnosed infections. Or they get infected during pregnancy, a time when few women would think to use a condom. There are also women who get infected after they have given birth to a healthy baby but while they are still breastfeeding.

“It’s probably unrealistic to say we can get that 40 down to zero,” admits Tookey, whose study follows all infants born to women known to be HIV-positive at delivery in UK or Ireland. “But we should be able to get it down to 10 a year if we can make sure women have every opportunity to take the test, and if positive, have as much support as they need to enable them to take up the treatment in pregnancy, and avoid breastfeeding.”

That would, of course, be a medical triumph – but those living with HIV are equally concerned that there is a social breakthrough too.

It is because society stigmatises HIV with such “vicious ignorance”, says Pauline, that she dreads the moment she has to tell her young son about her own infection. “I got pregnant because I was too scared and ashamed to tell the nurse who gave me my ‘morning after’ pill about my HIV status. I didn’t realise that my medication made a difference to how well the contraception would work,” she says. “I’m hoping that, by the time my son needs to learn about my status, the stigma will have come down and people will be more comfortable talking about HIV. I’m hoping that by then, we won’t have to hide any more. That learning of my status will be the same as telling him I’ve got any other manageable disease.”

She pauses, an elegant young woman with long, immaculately lacquered nails at which she anxiously picks and tugs. “The fear that my son will judge me for having this disease is something I can’t begin to worry about now. Why should he blame me for being born sick? Why should anyone judge me for that?”

Names have been changed

Original Article via The Guardian

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Positive Men’s Support Group

Do you wish there was a support group, specifically for men where you can talk to other guys about the HIV related issues that affect you?

Well, you’re in good company!

LASS are working with HIV positive men to support and address issues that affect them.  We hope to understand the issues properly so we can better educate the various services across Leicester, Leicestershire and Rutland so more men have better access to health care, information and advice, tailored to meet the needs of HIV positive men.

Our first meeting is today, 12th March between 17:30 – 19:00 at LASS (53 Regent Road, Leicester, LE1 6YF – click for a map).  We appreciate that for some, this is immediately after work so we’re providing food, (Pizza) – vegetarian and Halal options available.

We do hope you’re able to attend, as this is the first group, we’re seeking members to get involved and set the agenda for future meetings so we can support each other and develop support services throughout the county.

If you would like any further information, please contact Chaz, on 0116 2559995 or by email to: chaz@lass.org.uk

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