How schools are getting it wrong on HIV


Leo found out he was HIV positive when he was 12. A few months later, in a personal, social and health education lesson, the teacher was discussing HIV and Aids: “And some of the pupils were joking around, and the teacher said: ‘Guys, it’s not funny! If you have HIV, you don’t have long to live. If you have HIV, you’re going to die.’”

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Leo remembers trying to remain composed, but he couldn’t: what he’d heard was so shocking, so unexpected. His teacher noticed the tears running down his face, took him out of the classroom and asked: “What’s wrong?” And Leo said: “Is that what’s going to happen to me, sir? I’m HIV positive.”

The truth is that Leo isn’t, and never was, going to die. Like most of the 1,000 or so school-age children in the UK who are HIV positive, his condition is carefully monitored and well managed by drugs. What he heard from his teacher that day was incorrect: misinformation from someone in a trusted position who a pupil would usually expect to be correct.

Leo’s tale is one of many examples of how wrong schools often get it where HIV is concerned. Students have been humiliated and shocked in their own schools, and some are reported to have been excluded by their school on disclosure of their HIV status.

As well as causing distress to affected pupils, teachers’ misconceptions – when passed on to other children – ensure a new generation is, in turn, misinformed. All of which explains why the Children’s HIV Association (Chiva) is reissuing guidelines for schools this week, and why its projects manager, Magda Conway, says all teachers need to become much more aware of the issues around pupils who are HIV positive or who are affected by HIV through someone close to them. “Teachers aren’t a bad lot, we don’t want to vilify them, but many of them are very ill informed about this,” says Conway. One survey carried out by Chiva last year found that fewer than half of teachers were aware that mother-to-child transmission is the most common route of infection to children, and more than 50% believed HIV could be transmitted via spitting or biting.

“The problem is that many of them got their information about HIV from the notorious Aids campaign of the 1980s – the ‘Don’t die of ignorance’ campaign,” says Conway. That campaign, run at saturation levels by the Department of Health, featured crumbling mountains and a falling tombstone, and a voiceover that spoke of the virus as “a threat to us all”, the cause of “a deadly disease [with] no known cure”.

“Science has come on in leaps and bounds since then – today it’s a manageable health condition, and it needs to be treated that way. Too many teachers still base what they know on the ‘Don’t die of ignorance’ campaign.”

She says schools need to ensure that a pupil who discloses their HIV diagnosis will be sensitively and professionally supported. “If teachers become aware that a child in school is living with HIV, they need to understand that there is no risk to anyone else, and that confidentiality should be respected.” The revised guidelines spell out the most misunderstood key facts, including the crucial issue that HIV cannot be passed on through normal play and normal childhood interactions.

“No one has ever contracted HIV in school, period,” says Conway. “A pupil or a teacher living with HIV poses no risk whatsoever to the school community.”

Those with HIV, the guidelines spell out, can have every expectation of living long and happy lives. And confidentiality is essential to people living with HIV, due to the stigma that remains in society around the virus.

In an attempt to step up awareness, Chiva took Leo and a group of other HIV-positive young people to a meeting at Westminster last week, where they shared their stories with MPs and peers.

Cece, 17, told how her boyfriend found out she was HIV positive and started spreading the story around the school. “I stopped taking my meds because I thought that would be a way of forgetting about it – everything seemed so awful,” she says. “When you’re HIV positive you live a double life, and at some point it’s going to cross over.” And what happened next? “You really find out who your friends are: a group of my friends got the kids together who knew and said, stop spreading these stories. But the point is that it should have been the teachers who did that, not the children.”

Sometimes the ignorance of teachers puts their better-informed pupils into a difficult situation, as happened to another pupil, Evie. “We were in a science lesson and the teacher was asked, how is the HIV virus passed on? And the teacher said, you can get it from kissing someone. And I knew, of course, that this wasn’t true, but I wasn’t able to put the teacher right because how could I have explained how I knew without disclosing my own HIV status, which it wouldn’t have been appropriate to do?”

As heartbreaking as Leo’s experience was that of Shona, who, like Leo, knew she was HIV positive but hadn’t disclosed it to her school. “I was in a humanities class and the teacher started going on about what HIV meant. She said if you have it, your life expectancy is probably going to be about 10 years. And I was in year 9 so about 13 at the time, and it was shocking and confusing. I thought, does that mean I’ll only live another 10 years? It wasn’t what I’d been told, but when you hear a teacher saying something like that, it makes you doubt what you thought you knew.”

Other youngsters told stories about overreaction on the part of their teachers when their status was disclosed. One boy talked of feeling alarm bells were ringing when he had a nose bleed; a girl spoke about how she was offered a nurse to talk to daily. “I said, I don’t need to talk to a nurse every day! I see enough nurses. I just want a normal life.”

The lack of good management for HIV-positive pupils means they sometimes miss out on, for example, school trips – as happened to Cece. “I wanted to go on a skiing trip to Austria when I was in year 8. It was 10 days away, and as soon as I told my mum she was like, how on earth can you do that? You have to take your medicines, you can’t go abroad.” Cece didn’t go on the trip. “But why should I have missed out? The truth is I could easily have gone on that trip if there had been proper support for me in the school.”

What schools need to provide, says Conway, is the potential for a pupil who is HIV positive to tell one trusted person. “You get some schools where it’s discovered that a pupil is HIV positive and there’s a kneejerk reaction based on ignorance. I’ve heard of pupils even being excluded – that happened as recently as 2013,” says Conway. In that instance it was a third party, a community worker, who disclosed the pupil’s HIV status to the school, which then took advice from a national teaching organisation – advice that turned out to be 25 years out of date. At another school she was told about, says Conway, the headteacher told an assembly that a pupil was HIV positive and was being excluded.

The National Association of Head Teachers is backing the Chiva campaign. Its president, Tony Draper, says schools need to make themselves safe places for children who are HIV positive. “They need to ensure that pupils can disclose their status to one person, and no one else needs to know,” he says. “At the moment, pupils are missing school for medical appointments without being able to tell anyone why they’re away. That needs to change.”

The truth is, says Conway, that the treatment of pupils with HIV should be the same as the treatment for any other pupil: there are no special requirements, except the need for one person they can feel confident in disclosing their status to, should they choose to. “The biggest thing we’re fighting is the stigma that surrounds HIV, and the biggest problem for pupils who live with HIV isn’t physical health issues, it’s mental health issues. Children who are HIV positive are more likely to have mental health problems, more likely to self-harm, and more likely to take their own lives. And that’s all connected to the pressures that go with being HIV positive – and that’s what we want schools to help change.”

All children’s names have been changed

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What’s stopping YOU from having a HIV test?


  • Have you ever had sex without a condom?

  • Have you ever had a HIV test?

Two simple questions, two simple answers.

If you’ve ever had sex without a condom and never had a HIV test, how do you know you’re HIV negative?  That’s the drive behind National HIV Test week which commenced today.

Regular readers of this blog should know what HIV is all about since it’s what we write and share about but what about people who know very little about HIV and why it’s important to get tested?

Put simply, HIV (Human Immunodeficiency Virus) gradually attacks your immune system, which is your body’s natural defence against illness.  If you were to become infected with HIV, you’ll find it harder to fight off infections and diseases.  It’s a progressive disease and unfortunately, it’s incurable but if caught early and given the right treatment, you’ll be fine.  Although you’ll need to make sure you watch your health and stay in touch with your doctor.

A lot of people think HIV is a death sentence, that’s simply not true (click this link to find out why) but if left untreated it will cause you some problems so it’s best to get tested for HIV at least once in your life, just to be sure.  There are many others who test regularly for HIV to keep their health in check.

About a quarter of people who have HIV don’t realise they have it, and it’s very likely that untreated HIV will be passed to other people.  That’s why we’re inviting YOU and everyone (in Leicestershire) who reads this post to have a HIV test.  If you can visit us, great – we’ll be happy to give you a confidential test or if you prefer to test confidentially at home, that’s ok too!

This National HIV Testing Week think about the best HIV testing option for you.

We’re can’t tell you which is the right one, because that’s down to your personal preference.  If you’d like to visit us, head on down to 53 Regent Road, Leicester. LE1 6YF (Here’s a map) or call us on 0116 2559995.

Our Rapid HIV Test will provide your 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 after  contact for detecting HIV 1 and 2 antibodies.

If you prefer to test privately, in your own home, click this link for a home sampling kit.  It’s easy to home sample, simply drop a small amount of blood into a vile and post it off to be tested.  You’ll get the results in a couple of weeks.  This service is only for people who live in Leicestershire.

Not from Leicestershire? – No problem those lovely people at NAM have built a HIV test finder service.  Head on over to: to find out where you nearest HIV test centre is.

So, you have all the information you need to have a HIV test, what’s stopping you from having one?

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East Midlands African HIV Prevention Partnership awarded innovative HIV prevention fund


Public Health England has awarded £500,000 to support seven innovative voluntary-led HIV projects across England.

HIV (Human immunodeficiency virus) remains a major public health concern. Rates of infection are continuing to rise among certain groups of the population and the innovative M1 Distribution Centre Project aims to make a difference to HIV awareness by reducing late diagnosis and improving work place health. We will provide HIV and health awareness raising and testing events and use text messaging services to reach people who may not have time to get to their local health services. By working with some of the large work places in distribution centres in the Midlands along the M1, we will take health and HIV information and testing to where there are large numbers of male workers. Within the partnership we will share lessons and learning from the M1 events and also examine how people use texting to share information about health and HIV. We will particularly explore the project’s impact on HIV late diagnosis and awareness of HIV and other health conditions. We will also assess the impact that higher levels of awareness has on employment.

This project will be delivered by the East Midlands African HIV Prevention Partnership  – a partnership of local HIV awareness delivery organisations ( AISD – Nottingham, Well for Life – Derbyshire, Sunrise Family Support – Corby, STASS – Milton Keynes and Embrace Life, Luton – coordinated by Well for Living – Leicester and working with the University of Nottingham, School of Health Sciences  as our evaluators.

There are an estimated 107,000 people living with the virus in the UK, of whom around a quarter (26,100) are unaware they have HIV and are at risk of unknowingly passing on the virus to others. However targeted and innovative local initiatives can reduce the risk of people catching or passing on HIV.

The new National HIV prevention fund is supporting selected local projects that offer new and innovative ways of delivering HIV prevention, aiming to turn around the ever increasing numbers of new HIV diagnoses among certain groups of the population. Public Health England received over 90 applications to the fund for 2015-16 from all across England, from which seven projects were allocated funding.

Project Quote/s

Professor Kevin Fenton, Director of Health and Wellbeing at Public Health England said;

“While we are seeing HIV rates declining in the general population, it is still a serious problem within certain communities. The national innovation fund supports projects that offer creative approaches to a longstanding issue, boosting local action to help reduce the rates of HIV among high-risk groups, such as African communities.”

Jenny Hand, CEO of LASS and Well for Living said;

“We and our partners in the East Midlands African HIV Prevention Partnership are really delighted to be working closely with PHE on our innovation fund. We are confident that through our innovative M1 distribution centre project we will contribute to reducing late HIV diagnosis, improving HIV awareness and challenge stigma and discrimination.”

Dr. Holly Blake and Dr. Catrin Evans, senior researchers from the University of Nottingham, School of Health Sciences, said:

“We are thrilled to be involved in this exciting initiative which combines established and new technologies in promoting health amongst groups who are traditionally very hard to reach. Lessons learned from this project have the potential to influence HIV prevention on a far wider level.”

The seven successful projects all target groups at high risk and are supported by their local authorities.

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HIV scientists launch 23 million euro project to develop vaccine


A new 23 million euro initiative to accelerate the search for an effective HIV vaccine begins today.

Financed by the European Commission, the European AIDS Vaccine Initiative (EAVI2020) brings together leading HIV researchers from public organisations and biotech companies from across Europe, Australia, Canada and the USA in a focused effort to develop protective and therapeutic HIV vaccines.

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According to the World Health Organisation, around 35 million people were living with HIV at the end of 2013. Over two million people are newly infected every year, and it is estimated that around 22 billion US dollars is spent yearly on HIV treatment and care. An effective vaccine remains the best hope of ending the epidemic.

Although researchers have been working on developing a vaccine for 30 years, recent advances are helping to speed up their quest. Scientists have isolated antibodies that are able to block HIV infection in preclinical models, and there have been new developments in using synthetic biology to design better vaccines.

The EAVI2020 consortium, which is led by Imperial College London, unites scientists from 22 institutions, pooling their knowledge and expertise to develop novel candidate vaccines that can be taken through to human trials within five years. EAVI2020 is funded with an EU grant under the health program of Horizon 2020 for research and innovation.

Professor Robin Shattock, Coordinator of EAVI2020, from the Department of Medicine at Imperial College London, said: “Creating an effective vaccine against HIV represents one of the greatest biological challenges of a generation. This project creates a unique opportunity for us to build on the enormous scientific progress gleaned over the last few years, providing an unprecedented insight into the nature of protective antibodies and anti-viral cellular response that will be needed for an effective vaccine. We now understand much more about how humans make protective immune responses and how to structure vaccine candidates. We have a level of understanding at a molecular level that was not previously available.

“But it is impossible for one group or institution to create an HIV vaccine on its own. This new project should enable us to move much more quickly. It brings together a multidisciplinary team of molecular biologists, immunologists, virologists, biotechnologists and clinicians, providing the breadth of expertise needed to take the latest discoveries in the lab and rapidly advance them through preclinical testing and manufacture, into early human trials.”

At Imperial, researchers will be looking at how healthy human volunteers’ immune systems respond to potential vaccines, studying the antibodies that the volunteers produce. The researchers will explore the pathways in the body that make these antibodies, in order to fine-tune candidate vaccines.

Dr Ruxandra Draghia-Akli, Director of the Health Directorate at the Directorate General for Research and Innovation of the European Commission said” In its dual role of policy maker and research funder, the European Commission has played an essential part for over thirty years in supporting HIV vaccine research. Despite major global investments in the field and the promising progress, several scientific obstacles have to be overcome to develop novel promising HIV vaccine candidates. It is with this in mind that the European Commission is providing an almost 23 million Euro grant to the EAVI2020 consortium from which we have high hopes for success. This will allow European scientists to work together and in collaboration with researchers from outside Europe to successfully develop predictive tools and better vaccine candidates to be tested at an early stage of the process”.

The project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 681137.

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Multiple sclerosis patient walks after taking HIV drugs


A woman with multiple sclerosis (MS) says her symptoms improved so dramatically she was able to walk again after being prescribed HIV drugs.  Shana Pezaro, 36, from Hove, East Sussex, was given antiretroviral drugs after fearing she may have contracted HIV.  Within days, Miss Pezaro noticed an easing of her MS symptoms.

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When a doctor saw her walking up stairs after years of using a wheelchair he set up a clinical trial.

Multiple sclerosis is an incurable condition that can lead to sight loss, pain, fatigue and disability. It affects around 100,000 people in the UK.  In MS the coating around the nerve fibres is damaged causing a range of symptoms.  Once diagnosed there is no cure, but treatments can help manage the condition.

Physical symptoms of MS might commonly include vision problems, balance problems and dizziness, fatigue, bladder problems and stiffness and/or spasms.  MS can affect memory and thinking and also can have an impact on emotions.

Miss Pezaro was a dancer and piano teacher before being diagnosed with MS at the age of 28. The condition affected her hands and feet and she used a wheelchair.

About a year ago, Miss Pezaro thought she may have been exposed to HIV and her doctor prescribed emergency antiretroviral drugs.

“Three days after I took the drugs I walked up a flight of stairs,” she said.

“That was an unbelievable, massive change.”

Prof Julian Gold from the Prince of Wales Hospital in Sydney, saw a video of Miss Pezaro climbing the stairs and a clinical trial was set up to look at the impact of single or combination antiretroviral drugs on MS patients.

An earlier study led by Dr Gold conducted with Queen Mary University, London and the University of Oxford showed an association between HIV and MS.

They reported antiretroviral treatment may suppress other viruses such as those which may cause MS.

Dr Gold said: “The next stage of the investigation is to use a very similar combination [of HIV drugs] that Shana took. I think that might be quite optimistic.”

A spokeswoman for the MS Society said: “Our growing understanding tells us that viruses have a role to play in multiple sclerosis and it will be interesting to see the trial results – positive findings mean another step on the road to beating MS.”

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LASS Outcomes 2014/15


Traditionally, each year we publish our Annual Report.  The report gives insight into our organisation with case studies, interesting statistical information and of course a full copy of our accounts for the year.

For 2014/15, we have highlighted our achievements in our Outcomes Report which goes with our statutory accounts.

For 2014/15, we assisted 293 people living with and affected by HIV. – Their demographic information is found in the report (link below).

During 2014/15 we delivered 59 training sessions / workshops across a range of HIV related topics which were attended by 1176 individuals. Those attending are now more informed about HIV and will have a more in-depth understanding of the condition and its impact on overall health.

They will also be better able and more confident to challenge stigma and discrimination against those living with HIV, and through their greater understanding, be able to support people they work with, friends, neighbours and community members, who live with HIV. From the charts below you can see how we have reached people both in the city, county and beyond via the sessions and workshops we have delivered both here at LASS and out and about across the region.

We provided free condoms to community groups and to individuals. Condom distribution helps to achieve safe sex, prevent HIV transmission and enables discussion about HIV and other sexually transmitted infections.  Condoms are distributed in packs of different sizes with lube, information and referral contacts along with our very own  ‘Size-OH-Meters‘ – designed to reduce transmission by encouraging people to use correct size condoms. Last year we gave out over 33,500 condoms of various sizes and over 1000 femidoms.

Our Rapid Testing service continues to go from strength to strength, increasing the number of communities it  reaches and supporting people who choose to test at home.  LASS testers still provide on-going information and advice in relation to testing, and refer many more service users to Sexual Health clinics generally.  More information can be found in the report.

This year we welcomed 32,922 unique visitors to our websites & blogs, almost 4000 more visitors than last year, signifying an almost 14% rise on 2013/14! At the end of March we also had over 1000 people following us on Twitter!  (If you don’t already follow us head over to twitter and say “hi” (@lassleics).

As a result of this increased Internet traffic people are better informed about many aspects of living with HIV, updates in medication and other health and social issues that impact on those living with HIV. We know people use our website to find out about HIV testing, training sessions and events we are delivering and on behalf of the entire team at LASS, thanks for following this blog, or subscribing to our newsletter.

Your copy of the report is here.  Please click to download.

Our accounts for the year can be found here.

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One in six people accessing HIV care are aged 55 or over


Treatment improvements, ongoing transmission and a steady increase in new diagnoses have contributed to an increase in the number of people living with diagnosed HIV.

According to a new report from Public Health England, there were 85,489 people being seen for HV care across the UK in 2014. “The age of people accessing care for HIV continues to increase, with almost one in six now aged over 55,” it adds. “The aging cohort of people living with HIV emphasises the importance of integrated care pathways to manage co-morbidities and other complications.”

Other data in the report includes:

  • There were 6,151 new diagnoses in 2014, a slight increase from 2013
  • The number of men who have sex with men (MSM) newly diagnosed with HIV is increasing, from 2,860 men in 2010 to 3,360 men diagnosed HIV-positive in 2014
  • New diagnoses acquired through heterosexual sex has declined (from 3,440 in 2010 to 2,490 in 2014), largely due to a reduction in diagnoses among black African men and women (1,801 in 2010 to 1,044 in 2014)
  • Of all people attending for care in 2014, 91% were on antiretrovial therapy (ART), “of whom 95% were virally suppressed and unlikely to be infectious to others
  • 41% of those accessing HIV care are in London.

“A major challenge for the UK remains the timely diagnosis of HIV infection in order to start lifesaving ART and prevent onwards transmission of infection. Two out of five people newly diagnosed with HIV in 2014 had ‘late stage’ HIV, evidenced by a CD4 count below 350, and this remains stubbornly and unacceptably high (56% in 2005),” says the report.

A fifth (21%) of English local authorities had a diagnosed HIV prevalence above 2 per 1,000 in 2014, the threshold for expanded testing into general practice new registrants and hospital admissions. “This included all but one London borough. There is an urgent need to increase HIV testing opportunities and uptake for people living in these areas, in line with national HIV testing guidelines.”

Download your copy of the report here.

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