Positive Nation Magazine - Summer 2013

SUMMER 2013 – FREE Please take a copy

POSITIVE PRIDE ALSO INSIDE •SEX AND SELF RESPECT | PATIENT ENGAGEMENT | WORLD NEWS

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REGULARS

FEATURES

Foreword – Daniel Charcharos

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World News

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What’s New at NAT?

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Positively UK - Patient Engagement

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Positive Eye - Pride London 8

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2013 Football Marathon 15 Gareth on Sex and Self Respect

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The Sussex Beacon Sex and Self Respect

LIFESTYLE

Newly Diagnosed – Generics 22

Gareth looks at attitudes towards Sex and Self Respect

I-Base answer the important questions.

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A update on the activities of one of our favourite organisations TackleAfrica - at their Football Marathons

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FOREWORD: DANIEL CHARCHAROS

Welcome

to Positive Nation Dear Readers, Welcome to the summer issue of Positive Nation – in comparison to last summer it has been fairly quiet in the UK, however, the period has seen self testing kits become a reality and it’s also seen a change in legislation to allow healthcare workers to practise all parts of thier job. Oh - and the small matter of the marriage equality bill!

Editor: Daniel Charcharos

Summer is also Gay Pride season - the other day I was sent a link to a rather nasty looking website about a series of Hetro Pride events accross the UK - the site did it’s best to not to be bigoted, but used the word ‘normal’ way too many times for my liking. But it got me thinking - has there ever been a specific pride event for HIV-positive people? To the best of my knowedge there hasn’t, however, Gay Pride events have always been inclusive and included sexual health issues whilst tackling issues around HIV education/stigma.

In this way the whole ‘Human Rights’ movement should be very proud of what Gay Pride has helped achieve.

Hope you enjoy the issue.

Take care, Daniel and the PN Team with love.

“HIV does not make people dangerous to know, so you can shake their hands and give them a hug: Heaven knows they need it.” ~Princess Diana

DISCLAIMER © 2013. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,

Editor – Daniel Charcharos

appearance or likeness of any person or organisation in articles or advertising in Positive Nation is not to be taken as any indication of health, HIV status or lifestyle.

Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Daniel Charcharos

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UK government to lift a ban that stops healthcare staff with HIV performing certain medical procedures Healthcare staff in England, Wales and Scotland having HIV treatment will be able to take part in all tasks, including surgery and dentistry. England’s chief medical officer, Prof Dame Sally Davies, said it was time to scrap “outdated rules”. Self-testing kits for HIV will also be legalised from April 2014, with the aim of improving early diagnosis.

Around the world, there have been four cases of health workers infecting patients, none of which was in the UK. Under current guidelines healthcare staff with HIV must not carry out “exposure prone procedures” - where the worker’s blood could contaminate the patient’s open tissues.

These procedures include those where the worker’s gloved hands may be in contact with sharp instruments, needle tips or sharp pieces of the patient’s bone or teeth.

Under the new system, healthcare workers with HIV will be allowed to undertake all procedures if they are on effective combination anti-retroviral drug therapy.

They must also have an undetectable viral load of HIV in their body, and must be regularly monitored.

Public Health England will set up a confidential register holding data on infected workers. About 110 staff currently working in the NHS, including doctors and midwives, are covered by the current regulations. The change applies in

England, Wales and Scotland, but does not yet apply in Northern Ireland, which will make an announcement at a later date.

Deborah Jack, chief executive of the National Aids Trust, welcomed the new policy for being “based on up-to-date scientific evidence and not on fear, stigma or outdated information”.

Sir Nick Partridge, chief executive at Terrence Higgins Trust, said: “Advances in medication have transformed what it means to live with HIV, and it’s great to see regulations starting to catch up.”

HIV man loses appeal Much critised China A HIV-positive AIDS counsellor who was to expand medical convicted of attempted murder for having unprotected sex with his unsuspecting outreach to HIV girlfriend has lost his appeal in the High Court in Pretoria, South Africa. The appeal patients of Lovers Phiri, 35, against his conviction on a charge of attempted murder and the six-year jail sentence imposed on him by a magistrate. Phiri’s former girlfriend testified during the trial that she had met him in 2010 at a local clinic where she underwent an HIV test, that had a negative result.

Phiri was employed as an HIV/AIDS counsellor and also responsible for testing. Phiri had at that stage been HIVpositive for three years and was aware of his status. A relationship later developed between the woman and Phiri and they had consensual sex on two occasions, but Phiri on each occasion declined to use a condom, despite being requested to use one. The woman subsequently tested HIVpositive when she was tested as part of her pre-natal routine.

Under a pilot program launched in July 2012, the Zhongshan County People’s Hospital began providing free medication, including antiretrovirals, to everyone who tests positive for HIV. Prior to expanding its medical outreach services, only AIDS patients with severe damage to their immune systems were eligible to receive the free medication.

In the one-year period ending on June 30, 2013, 110 people tested positive as HIV carriers in the county, including 10 who died. Of the rest, 90 are currently receiving free treatment, mostly starting within 14 days of the confirmation of their HIV status. The pilot program has expanded treatment from 70 percent to 90 percent of infected people in the county, and the mortality rate there has dropped by 70 percent.

The program also closely monitors prostitutes, prison inmates and families in which at least one spouse is HIV-positive in the region, where sexual intercourse accounts for 90 percent of virus transmission, compared with 60 percent nationwide.

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After seeing the success of the program in Zhongshan, the Chinese Center for Disease Control and Prevention (CDC) on Aug. 2 announced its decision to expand the program to nine other provinces. The program widens access to free medication to everyone with HIV or AIDS. To qualify for the free medication in the past, people with HIV had to take a test to prove that their body’s CD4 cell count had been reduced to a level that points to a badly weakened immune system.

In China, to receive the free medication, a test would need to show that a patient’s CD4 cell count is below 350 per cubic mm, according to the CDC. Prior to the pilot program in Zhongshan County, it took at least four weeks to schedule a CD4 test after someone was diagnosed with HIV. Once proven eligible for free medication, the carrier would need to wait at least another four weeks to initiate treatment.

However, under the pilot program, health authorities in Zhongshan County hoped to streamline the process, getting treatment to the people who need it faster.

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No plans in New Zealand for a home HIV test due to accuracy issues People in the UK will soon be able to test for the HIV virus from their own homes.

Self-testing has been available in the United States and now the UK is following suit, but the New Zealand AIDS Foundation (NZAF) says the do-it-yourself approach is wrong and it won’t be introduced in its country.

The OraQuick test detects the presence of HIV in saliva and returns a result within 40 minutes.

“The particular test that the British are looking at has results that [where] about one in 12 tests will be inaccurate -now that’s just far too high,” says Shaun Robinson, of

NZAF. The NZAF says everybody needs support when they’re diagnosed, and the home tests don’t provide that. “It’s dangerous because if you do test positive, you might completely freak out and have no support, no professional advice, no assistance in how to deal with the fact that you now have a life-changing disease,” says Mr Robinson. In Britain it’s estimated that 24 percent of HIV carriers don’t know they have it. Mr Robinson says Britain is dealing with an epidemic while New Zealand is leading the charge in testing and prevention of the virus by promoting safe sex. “What we’re doing is succeeding, what Britain is doing is failing.” And that’s why the NZAF won’t introduce home tests in the future.

Real World Star and HIV activitist Sean Sasser dies aged 44 In August Sean Sasser, who was introduced to the public on The Real World, but went on to be a tireless AIDS activist and pastry chef died at age 44.

Sasser died of mesothelioma, a deadly and rare form of lung cancer, according to his life partner Michael Kaplan.

Friend and Real World star Judd Winick announced his death via Twitter. ‘Our friend Sean Sasser has died. Our love goes out to his family & husband Michael. We will miss u so much,’ Winick wrote.

Sasser wasn’t a full cast member on MTV’s The Real World: San Francisco, which aired in 1994 and was the third season of the groundbreaking reality series. But he and cast member Pedro Zamora captured audiences’ hearts with their blossoming romance, which pioneered depictions of gay and HIV-positive individuals on mainstream TV. Sasser soon proposed to Zamora on the

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2.89 million people have HIV in India Around 2.89 million people are now HIVpositve in India according to the latest survey conducted by the country. The Indian Minister of State for Health and Family Welfare, Abu Hasem Khan Choudhury, informed the upper house of its Parliament that ‘HIV Estimations 2012’ based on HIV Sentinel Surveillance data up to 2010-11, highlighted that the estimated number of people living with HIV/AIDS in India was 2.89 million in 2011.

“According to this survey, 86.34 percent were in the age group of 15-49 years in 2011 in India,” the minister said. He pointed out that survey suggests that HIV prevalent among pregnant women was considered proxy for HIV infections in general population. “As per HIV Sentinel Surveillance 2010-11, pregnant women in rural areas have HIV prevalence of 0.37 percent, compared to 0.44 percent among those in urban areas,”Chowdhary said.

show, and the happy couple exchanged vows in a ceremony held at the show’s loft.

Tragically, Zamora died from AIDS-related complications soon after the end of the season.

No doubt doubly inspired by the passing of his partner, Sasser became a prolific activist in several social and political groups and fought to educate people about the realities of living with HIV. More recently, he was working with nonprofit AIDS United (where Kaplan is president and CEO) and also received warm reviews for his pastry work at RIS, a restaurant in Washington, D.C. ‘I want to serve desserts and pastries that people recognize and love to eat,’ he told the Washington Blade, ‘but sometimes with an unexpected twist of surprise.’

But it’s no twist to say that Sasser’s legacy will surely continue to inspire and educate even in light of his untimely passing.

20 percent of Sri Lankans having unprotected sex contract HIV A survey carried out by Sri Lanka’s STD/ AIDS Campaign of the Ministry of Health reports that 20% of people who have unprotected sex in the country contract HIV/AIDS. The survey has revealed that on a daily basis 140,000 individuals in the country are engaged in unprotected sex with prostitutes, as well as being involved in extra-marital relationships.

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POSITIVE EYE - PRIDE

Pride London Called for Equality and Mutual Respect

Pride and HIV have always been linked, for example rapid testing and the message of safe sex is a integral part of the event.

Back in the in the early days of HIV/ AIDS especially. Pride was used a vehicle to help spread awareness of the virus and getting it in the news.

This years Pride London was one of the biggest LGBT+ events in London of the last ten years, and with the Equal Marriage Bill passing through its final stages in Parliament, Britain can be proud of being one of the most advanced nations in the world in terms of equal rights for LGBT+ people.

Writing in the official Pride guide about the Equal Marriage Bill, Prime Minister David Cameron said: “There will be girls and boys in school today who are worried about being bullied and concerned about what society thinks of them because they are gay or lesbian. By making this change they will be able to see that Parliament believes their love is the same as anyone else’s love and that we believe in equality. I think this will enable them to stand that bit taller, be that bit more confident and I am proud of that.”

Deputy Prime Minister Nick Clegg wrote: “Many straight people have argued for the reform [of equal marriage] with as much passion as gay people. Why? Because this isn’t just about technical changes or legal definitions. It isn’t just a ‘gay issue’. It’s about the kind of society we wish to be.”

We cannot take for granted the achievements of the 41 years since the first Pride march in London though.

Progress since then under governments of every stripe has been fast, if not always steady. But legislation alone does not bring about genuine equality. It is the responsibility of each of us to embrace and spread the message of mutual respect to family, friends, neighbours and colleagues.

Ed Miliband, Leader of the Opposition, wrote: “…there is still more to be done.

The terrible death of Lucy Meadows highlighted the prejudice faced by the trans community. Too many young people still fear to come out at school due to bullying. In too many places in 8 | Positive Nation

the world, it is still a crime to be gay.”

Pride in London were delighted that UK Black Pride was, after a gap of too many years, once again an integral strand of the Pride celebrations. And a look at the incredible diversity of the 150 groups in this year’s Parade, going from Baker Street making its way along Oxford Street to Oxford Circus then along Regent Street to Piccadilly, heading down to Waterloo Place then to Trafalgar Square before ending in Whitehall, showed the astonishing

richness and strength that there is in the LGBT+ community. By avoiding divisive treatment of one another, everyone can focus our attention on building a society where equality is intrinsic.

Michael Salter, Chairman of Pride in London, said “Pride in London was a great opportunity to promote a charity or community group and campaign. This year the theme is “Love (and Marriage)” to celebrate civil partnerships, parents’ POSITIVENATION.co.uk

POSITIVE EYE - PRIDE

love for their children, love of friends and family but it also recognises the Equal Marriage bill going through Parliament.

Pictures accredited to Hayden Murtagh Pictures from 2013 London Pride

The feedback from the community has been hugely positive. On 29 June (the date of the Pride Parade) Pride were being tagged in on average 100 tweets an hour and the sentiment was overwhelmingly positive.

Around 15,000 people in 150 different groups took part in the parade. The Police made Pride aware that 60,000 people passed through Trafalgar Square on the day and it was at capacity for most of the period from 2pm until the entertainment ended at 8pm.

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POSITIVE EYE

The Food Chain’s Silver Apple Walk!

To celebrate 25 years of delivering meals to people living with HIV, The Food Chain is taking a walk down memory lane!

On Saturday 21 September, expect to find a sea of green t-shirts in Central London as The Food Chain take to the streets for a 25km ‘Silver Apple Walk’. This walk will be encompassing a number of important landmarks in The Food Chain’s history including all three kitchens currently used

by The Food Chain. Along the route will be 25 apple markers - and there will be a prize for spotting them all along the way!

As well as the 25km route, there will be

a shorter 5km option if you’d prefer a gentler stroll.

This is a wonderful, unique opportunity in which to celebrate 25 years of The Food Chain and raise money for people living with HIV. Th’ve never held a Food Chain sponsored walk before, but we can’t think of a better time in which to do so.

This will be a time to reflect on quarterof-a-century of meal deliveries to those in need, and look ahead to the next chapter in The Food Chain’s history.

Sir Nick Partridge to step down from Chief Executive of Terrance Higgins Trust Sir Nick Partridge will step down from his role as Chief Executive of Terrence Higgins Trust at the end of October 2013.

Sir Nick joined Terrence Higgins Trust as its first paid member of staff in 1985 when it operated out of a small London office run by a determined and dedicated group of volunteers. It is now the largest HIV and sexual health charity in Europe, supporting more than 100,000 people with HIV or sexual health needs every year through over 30 centres across England, Scotland and Wales. It has a membership of 14,000 people, 500 tireless volunteers and 270 staff, and an annual turnover of just over £20 million.

Sir Nick Partridge said: “It’s been an extraordinary three decades, and a privilege to serve such a remarkable charity as Chief Executive. Having led Terrence Higgins Trust through it’s 30th anniversary, the time feels right for me to move on to other challenges. I know that the Trust will continue to go from strength to strength and of course I’ll continue to support that journey as a friend of the charity.”

Professor Christopher Bones, Chair of Trustees of Terrence Higgins Trust said: “We are hugely grateful to Sir Nick for his enormous contribution to Terrence 10 | Positive Nation

Higgins Trust over the last three decades.

His vision, networks and insight are huge assets, and I am delighted that he will remain an important part of our family in the years to come.

“Our environment is one of continual change and we know that the future holds significant challenges. The Board is now looking for the next Chief Executive to lead Terrence Higgins Trust to 2020 and beyond. From 1st November, Paul Ward, currently Deputy Chief Executive at the Trust, will become acting Chief Executive while the Board recruits into the role.

In other news Terrence Higgins Trust has welcomed the Department of Health’s announcement that the sale of HIV selftesting kits is to be made legal in the UK. Policy Director Lisa Power said: “We warmly welcome this decision, which Terrence Higgins Trust has long campaigned for. People deserve to have a choice about how and where they test for HIV and proper regulation will make selftesting a safe and supported option for many more people across the country. The public response to our highly successful home sampling scheme shows that many people who have never tested before, or who have been putting off a visit to a clinic, are willing to test at home.

Above - Sir Nick Patridge

“Currently, most HIV transmission in the UK is driven by the 25,000 people who have HIV but have not yet been diagnosed.

Anything that encourages these people to test, take control of their health and get treatment is a welcome advance.”

Since 1992, the sale of self-testing kits for HIV has been illegal in the UK. Kits can currently be purchased over the internet, but they are unregulated, often of very poor quality and lack important information on HIV transmission and where to get support.

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FEATURE: THE NATIONAL AIDS TRUST

What’s New at NAT? There was a major victory for NAT campaigning and also for common sense when it was announced healthcare workers with HIV would be allowed to practice all parts of their jobs.

The change reverses a ban on HIV positive healthcare workers undertaking exposureprone procedures in place since the early 90s. This was in very early days of the virus.

We didn’t know exactly how HIV was passed on, there wasn’t any treatment available and a HIV diagnoses often meant a death sentence.

While other countries added extra safeguards or put measures in place to minimise the risk of HIV transmission from dentists to patients, the UK banned people living with HIV entirely from undertaking procedures which had any risk of HIV transmission, also known as exposure-prone procedures.

An exposure-prone procedure is any activity where your hands are not visible while in someone’s body and where they could encounter something sharp. The ban affected dentists, surgeons and midwives but the impact was felt most by dentists who were unable to practice at all.

Times have now changed. Scientific advancements in HIV understanding mean we know a great deal more about the virus.

We have ARTs that, if working properly, can mean it is impossible to pass HIV on to others. We also now have better tests for HIV so it is easier to monitor the levels of the virus in someone’s system.

Our understanding of HIV has changed so dramatically that it is time that the rules also change. Thankfully the Department of

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Health agrees. It has changed the guidelines and will now allow HIV positive healthcare workers to conduct exposure-prone procedures.

worry that finding out you have HIV alone might be difficult for some people, they also worry about inaccurate results or confusing information on the packs.

NAT has long been at the heart of the campaign to reverse this ban and sat on the expert working group which recommended the changes. We have also regularly brought up the issue with the Department of Health and are pleased to see that it has responded to our calls.

These are things we are thinking about too. We will be working closely with the Government to ensure the tests they approve are accurate, provide in-depth and relevant information about HIV and signpost people for a follow-up test and support if they do have a reactive result.

Back in February 2012 we asked our Activist Network to get involved and take part in the Government consultation on the issue.

We know people are already buying dodgy self-testing kits online and that some people for whatever reason don’t feel comfortable, or are unable to get to a sexual health clinic or other healthcare setting to test. A quarter of people with HIV don’t know they have it and nearly half are diagnosed late – we need to do something different to get these numbers down. We think self-testing is one way of doing this.

If you would like to play a part in changing discriminative rules around HIV then please join our HIV Activists Network. Being a member won’t take up a lot of your time, but can make a big difference to the lives of people living with HIV. It’s open to anyone who wants to bring about change in any areas relating to HIV. If you’d like more information on the HIV Activists Network go to http://www. lifewithhiv.org.uk/hiv-activists-network. If you’d like to join email HIVactivist@nat.org. uk and we’ll send you through everything you need to get started.

We are also pleased to announce our partnership with the Wig Party for their Masked Ball, taking place on Sunday 27 October. It promises to be an excellent night and all profits go to NAT. Tickets go on sale soon so keep an eye out on NAT’s Facebook and Twitter for more information.

More good news, after years of campaigning by the whole of the HIV sector, including NAT, self-testing kits will be legalised from April 2014. This means that people will be able to purchase a Government approved kit online or in shops and test for HIV in their own home.

There has been some debate as to whether self-testing kits are a good idea. People Positive Nation | 13

The African Health Do the African Health and Sex Survey now!

& Sex Survey There are nearly 1 million African people living in the UK, spread all across the country. While HIV can affect anyone, it is an unfortunate truth that more African people in the UK have HIV than most other sections of the population. In fact, nearly 1 in 20 Africans living in the UK right now will have HIV, and some may not even realise it. The good news is that there is free, effective medication available that means if you have diagnosed HIV, you can live a full and healthy life. The most important thing is that people take an HIV test and find out whether or not they need treatment.

Help improve the lives of Africans in England

Health professionals in England take very seriously the needs of African people when it comes to sexual health. There are many different charities that try to help African people avoid catching HIV, and try to support people who already have it. But in order to do their job well, and to spend their money wisely, it’s important that these charities It only takes 10 minutes and is and other health professionals have up-to-date information about whatanonymous African people think confidential and about HIV and the ways in which they behave that

could pick them at risk of catching it. This kind of information can help them to understand what new campaigns they might need to do, what kinds of services they might need to offer, and where they need to prioritise their money in order to help as many people as possible.

In order to help charities and health professionals with their work, Sigma Research (part of the London School of Hygiene & Tropical Medicine) is currently leading a large survey of African people in England. The survey asks questions about your health and about the kind of sex you have. It also asks you what you know about HIV and whether you have ever taken an HIV test. It’s complete anonymous and confidential – they don’t ask for your name, they just want to hear about your thoughts and experiences. They need as many people as possible to take part, so please, please click on it and now and ask you friends to do it too! It’s easy to complete and only takes 10 minutes.

www.AfricanHealthSurvey.com The African Health and Sex Survey is being carried out by Sigma Research at the London School of Hygiene & Tropical Medicine.

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FEATURE: FOOTBALL MARATHON’S

TackleAfrica The 2013 Football Marathons A couple of years ago we featured TackleAfrica’s quest to have the power of it’s programme proved.

We think they do a fantastic job and below we have an update following the recent round of its fundraising marathons.

UK charity TackleAfrica’s unique exploitation of the popularity of football to help young Africans affected by HIV continued this summer with almost 800 people taking part in epic Football Marathon tournaments across the UK. The events, which feature squads of eight playing football for 12 hours in fundraising super-tournaments, netted over £160,000, contributing to an 11 year total that is approaching the £1,000,000 mark.

The money raised runs TackleAfrica’s programmes in five African countries, where local football coaches, teachers and youth leaders are trained to deliver innovative football coaching sessions with integrated HIV messages. Young people learn on the pitch, playing out the roles of condoms, white blood cells, relationship partners and HIV testing facilities in a highly enjoyable footballbased environment, equipping them to make the right decisions when faced with similar situations in real life.

TackleAfrica’s Head of BusinessDevelopment, Tom Colborne – who devised the Football Marathon in 2002 and has organised and

played in every one since – explained the power of football in affecting positive social change in two very different continents.

Marathon teams, creating an international support platform which inspires both sides to stay engaged.”

“In the UK, our Football Marathons enable us to engage with people who are traditionally quite tough to recruit as fundraisers or charitable givers through conventional means.

Predominantly cash-rich time-poor men in their mid-twenties to mid-thirties, they don’t tend to respond to Direct Mail, or even emails, TV or other charity engagement ideas. We’re able to recruit them to raise £200 each in return for taking part in the ultimate footballing endurance challenge – and in turn they get to see how we can use the same sport to reach young people in Africa who may have slipped through the net of traditional HIV education programmes.

The London Football Marathon remains TackleAfrica’s flagship event – with 64 teams competing and raising over £125,000 – but other events are growing in Brighton, Jersey and Lancaster. Colborne explains: “In London it’s been gradual organic growth over 10 years – we started with just three teams in 2002 and then people came back the next year bringing their friends. We’re hoping for a similar process around the UK – Brighton has already grown to 16 teams in just two years and Jersey and Lancaster are not far behind despite having much smaller populations. It’s all about finding local volunteers with the passion to make a real difference and the right social networks that they can mine to find a group of people who we can support to care about fundraising as much as they do about football. One day we’d love there to be a Live8 style programme of Football Marathons kicking off in major cities across the world, raising millions to run HIV education through football coaching programmes in every country in Africa. We might need a bit of help though, I’m definitely getting too old for 12 hours of football every year…”

“The events are structured to celebrate fundraising rather than football achievement – in the same way that in Africa our aims are to improve individuals’ ability to make safer life choices, not just become better footballers.

Top fundraising teams get seeding advantages in the tournament and bigger and better trophies – there’s also a tournament football winner, but by then people are too tired to really celebrate!

“In the past, Football Marathon players with specific skills have then raised additional funds to visit our projects in Africa, supporting our local partners with capacity building work and seeing first hand how football can help save lives. That bridge is something we’re really keen on – we’d love to twin teams of Africans participating in our programmes with Football

Key stats: from this year’s Football Marathons featured: •

97 teams

•

776 players

•

988 games of football

•

3,624 goals scored

•

£162,305 raised

Last year TackleAfrica trained and supported 300 coaches across five African countries to deliver an hour of HIV education through football coaching per week to 12,000 young people.

If you’d like to find out more about TackleAfrica’s programmes or Football Marathons, you can visit their website www.tackleafrica.org or contact Tom at tom@tackleafrica.org

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The 2013 London Football Marathon

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FEATURE GARETH ON SEX AND SELF RESPECT

SEX AND SELF RESPECT Our very own Gareth looks at how sex and and the relationship between self-respect and why rates of STI’s are rising Consider this: • What do you think of when you think of sex? The good and bad experiences you’ve had and/or the lack of judgement and the mistakes you’ve made?

• Do you need to have emotions attached before indulging? Or, can you have sex without any feelings (bar sexual attraction) involved?

• How strong would you consider your moral code to be and does this impact upon your sexual behaviour?

• Do you look at, judge and/or have an opinion on other people’s sex lives and do you compare them to your own?

• Do you have a default perspective towards people with a different sexual orientation to your own, and how they conduct their sex lives?

• What is your opinion on the rise in unwanted pregnancies, abortion, STI’s, promiscuity and HIV? The subject of sex is a broad one with many layers to consider and there are varying perspectives from which one can examine it. For many people sex is a very personal thing; we’ve each had our own experiences, and opinions and feelings surrounding it, and we will each answer the questions above differently. Sex is beyond a simple singular definition, and it is likely one of the biggest ‘grey’ areas of each of our lives.

My own sexual journey has been an interesting one - to say the least. As an ‘out’ gay man for thirteen years my own experiences of sex and sexual practices would likely amass to a book, let alone an article of their own.

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My mid-late teenage years included having thoughts and feelings towards other guys which, coupled with being a ‘late starter’ puberty-wise (seventeen onwards) - and therefore not experiencing sexual urges until somewhat later than my peers - culminated in an early confusion in sexual matters and a delay in experiencing sex. I didn’t know it at the time, but I had anxiety disorder which resulted in clinical depression, nonexistent sense of self-esteem, self-worth and self-respect. Ultimately, this led to a poor start to my sex life. Losing my virginity to a stranger at nineteen was the start of a string of brief flings and onenight stands - a not uncommon, however

Not only did my diagnosis screw me up emotionally - it gave my incessant internal chatter yet another rod with which to beat me. It was further proof, if it were needed, of my sense of worthlessness and therefore it also increased my need to be wanted, needed, loved and worthy

unfortunate, scenario for a young gay man new to sex, men and ‘the scene’. I had my first proper boyfriend at twenty one – he didn’t treat me well. Then came a eight week fling with a serial cheater.

Not a good start. This all left me with the not altogether positive perception of myself as a sexual object, I’d become a ‘plaything’ for men. Subsequently, for almost a year I was a ‘kid in a sweet

shop’ when it came to men and sex; I was young, cute, single, and readily available to practically any man that wanted me: in short, I was a slut!

For appearances sake, I calmed down after a while – I’d already earned myself something of a reputation on ‘the scene’, so I shifted my sexual promiscuity ‘underground’, and, any further onenight stands, flings and/or ‘hook-ups’ were arranged online. However, my feelings of self-esteem, self-worth and self-respect continued to decline. I desired so strongly to be, and feel, wanted and needed - and, however short-term and ill-conceived this may have been, I thought sexual contact could help me to achieve this. Admittedly, protection wasn’t used on many of these sexual occasions - there’s no excuse I can offer for this: I was well-informed and aware of the risks. I suppose I just didn’t feel able to negotiate safe sex; this only served to feed my ever-growing sense of worthlessness.

By the age of twenty-three, I was indulging in risky sex more often which led to being involved in group sex during where, once again, protection wasn’t used. Receiving a text message a month later (April 2004) from one of the group to tell me that he’d been diagnosed HIV+, and having to wait two months for my own test (In those days it took that long!) at the Royal Victoria Hospital Belfast’s Genito-Urinary Medicine (G.U.M.) Clinic, was a painful period of self-reflection and intense self-loathing.

The ‘self-fulfilling prophecy’ came true; I was HIV+: I was neither shocked nor surprised. Frankly, given my behaviour at the time, it’s surprising I managed to avoid it for so long.

Not only did my diagnosis screw me up emotionally - it gave my incessant internal chatter yet another rod with which to beat me. It was further proof, if it were needed, of my sense POSITIVENATION.co.uk

FEATURE GARETH ON SEX AND SELF RESPECT of worthlessness and therefore it also increased my need to be wanted, needed, loved and worthy. Having built up such a strong set of negative beliefs and perceptions, my sex life had become one of the ‘muddiest’ areas of my life. I’m all too aware, that what I think I needed or wanted - whether that was closeness, intimacy, touch, acceptance, self-worth, feeling needed, wanted or loved – was not going to be attained by empty sex devoid of connection, or emotion etc. My

Unfor tunately, there are still large swathes of (both young and older) people who remain ignorant of sexually-related risks.

Add to this the increasing amount of sex displayed on television, films, advertising, the influence of peers - and the all-too-readily available instant methods of attaining sex via dating and cruising websites and apps it is perhaps no wonder that people are experiencing sex at a younger age with greater number of sexual partners. This is often before they are emotionally mature. diagnosis, however, has not, been the big life lesson it could have been and I have continued to exist through endless cycles of self-destruction - with my physical health and sexual conduct of my own doing since.

I know that as a Gay man society views me as highly promiscuous and, to look at my experiences (and others similar to mine), perhaps this perception isn’t completely unfounded. However, you can’t ‘tar us all with one brush’. Nor, if POSITIVENATION.co.uk

you look at statistics concerning the rise in rates of teenage pregnancy, abortion and STI’s/HIV in the heterosexual community, can you limit perceptions of sexual promiscuity to just Gay men (and/ or the LGBT sector) alone. Examining the youth for a moment: are these rises purely a result of a lack of good sex education in schools, or, are those who indulge in risky sexual behaviour doing so because they share feelings of worthlessness and a lack of respect for themselves, and others, as I did? Perhaps it is worthwhile considering both a clear consistent programme of sex education and, perhaps, counselling and lifecoaching, to give young people a solid foundation of self-esteem, self-worth, and respect for themselves and others.

Unfortunately, there are still large swathes of (both young and older) people who remain ignorant of sexuallyrelated risks. Add to this the increasing amount of sex displayed on television, films, advertising, the influence of peers - and the all-too-readily available instant methods of attaining sex via dating and cruising websites and apps - it is perhaps no wonder that people are experiencing sex at a younger age with greater number of sexual partners. This is often before they are emotionally mature. Of course, it is not purely among the youth that this behaviour can be found; the increase in rates of STI and HIV transmission among the ‘middle-aged’ bracket tells us that there are those who whilst might be, more emotionally mature - and, one would hope, more experienced and attuned to the ways of the world, are also either indulging in more risky sexual practices and/or having to deal with the aftermath of a cheating partner who is doing so.

and fear surrounding sex as a discussion topic; and, people’s levels of self-esteem, self-worth, and self-respect, and how this impacts on the (amount and types of) sex they are having?

Unfortunately, you cannot always be guaranteed that your sexual partner has told you the truth regarding their sexual history and status. Neither - unless you’ve been tested regularly and recently - can you be one hundred percent sure of your own status. You may be fortunate enough to have been educated in sexual matters, or had the resources at hand to become self-informed. However, you may be among the large swathe of society where this is, unfortunately, not the case.

You may have a healthy balance of selfesteem, self-worth, and self-respect and, therefore, applied this to your sexual actions - or, like me and others like me, be partly or wholly lacking in such to the extent as to allow a negative and disproportionate perspective and selfimage to creep into both your life, and your sex-life. What you can do (note to self!), however, is treat yourself with respect; you can both offer it as a gift to yourself, and allow it to permeate how you treat yourself and others, and how you operate/function sexually.

In short, respect yourself, respect others.

(Play safe).

With love, Gareth x

I’m not suggesting we should all remain chaste until we meet ‘The One’ (it’s evident I haven’t), nor do I cast judgement on anyone else regarding their behaviour (I feel I neither have the right nor the place to do so). However, what does concern me is that despite the level and accessibility of education and information available regarding sexual health – that the rates of STI’s are rising. What is the cause of this?

The increasing sexualisation of society by the popular media; the ever-increasing trend of transmission rates; the stigma Positive Nation | 17

18 | Positive Nation

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FEATURE: POSITIVELY UK

Let’s Talk… Engagement Around a year ago the Government gained a new mantra, “No Decision About Me, Without Me”, saying patients should share decision-making, know their options and have more control. Positively UK looks at how you can become more involved with services regarding your HIV It is important that you have a say in the issues that directly affect you, both in terms of your own treatment and in terms of healthcare policy in general. The direct involvement that this allows, and the knowledge that you can gain from it, can empower you to make your own decisions and know what is best for you. Being informed gives you a good grounding to know what needs to change and what you can do to make sure these changes happen. There are a range of networks, patient forums and organisations that can provide chances to engage.

Confidence and Knowledge Joining a group can seem daunting: the set-up may feel a bit formal at first and the language used is sometimes quite technical. But don’t be put off! Researching health and social care on the Internet or talking with a local HIV support charity will increase your confidence and knowledge. You can also join their service user forum, if they have one, which provides an opportunity to engage as part of a group and build your skills and confidence in a supportive environment.

Talking about your HIV HIV patient groups and specific HIV consultation events are places to discuss services for people living with HIV. Forums that seek wider patient and public participation such as the new Healthwatch will not necessarily have the same confidentiality. If you don’t feel confident talking about your experiences with HIV services in this context, that doesn’t prevent you from participating as you can still access other services such as GPs, dentists or social services.

As there are a lot of changes in healthcare, and expectations that people with HIV will access more care away from their clinic, it’s important that you can have your say in all health and social services.

Networks There are a number of HIV Networks out there.

Many operate online, which could be a good place to start if you don’t feel ready to talk in a group.

The National AIDS Trust (NAT) runs the HIV Activists Network. You don’t need to be loud, visible, and knowledgeable to be an activist, you just need a desire to bring about change and take part, whether through letter writing or talking face-to-face. The HIV Activists Network has been active in shaping the impact of the NHS reforms. Recently they asked members to write to Local Authorities, who will now have responsibility for health promotion, to ensure HIV prevention is a priority. They’ve also been

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working to improve HIV testing rates in TB clinics and to highlight the impact of benefit reform on people living with HIV. Other networks include Ffena, a network for Africans in the UK living with and affected by HIV. This helps people participate meaningfully in AHPN activities and the wider policy society (http://www.ahpn.org/ffena).

The UK Community Advisory Board (UK-CAB) is one of the biggest networks, with over 440 members and 120 organisations. UK-CAB is a community network around HIV treatments and support and develops treatment advocates across the UK. It is responsible for the election of the community representative to the British HIV Association (BHIVA). The representative ensures that members’ views are fed back to BHIVA and that patient needs are understood and addressed in any guidelines and research they produce (http://www.ukcab.net/join/).

Statutory Bodies Until now the main bodies for public and patient engagement were the Local Involvement Networks, also known as LINKs. A new body called Healthwatch is replacing these, and there will be a local Healthwatch set up in your area.

Healthwatch will independently influence your Local Authority (which will be responsible for social care and public health, including HIV prevention) and the new Clinical Commissioning Groups (responsible for healthcare and support).

The Department of Health says Healthwatch will “give citizens and communities a stronger voice to influence and challenge how health and social care services are provided within their locality”.

It won’t be possible for Healthwatch to address everything: with each area setting its own priorities, it may be difficult to get some issues such as sexual health on the agenda. But with so many areas for Healthwatch to address, it’s very important that people living with HIV are represented. You can became a member individually or as part of a Patient Forum.

Patient Forums Most Patient Forums are part of an HIV clinic and were initially established to ensure hospital services met patient needs. While still continuing to do this, many groups have expanded to take on additional functions and responsibilities.

Some have a consultation role, working with commissioners to ensure effectiveness in both hospital services and wider health services such as GPs. Others provide peer support within the clinic, with patients supporting other patients, providing newly diagnosed courses or workshops. There may already be a patient

forum in your clinic. If there isn’t and you want to set one up it’s useful to identify someone at your clinic who is a patient champion such as a consultant, nurse or health advisor. The clinic may be able to provide a room to meet in and refreshments for an event. You can talk to other patients and put up posters around the clinic to promote the group.

You should also talk to Forum Link. Forum Link strengthens local groups, providing support on procedures and financial management and co-ordinates a unified voice for HIV patient groups across the UK. Its growing membership represents thousands of patients.

ALhivE in Leicester is a member of ForumLink.

Julie, coordinator of ALhivE, says the group was established “to provide a voice of lived experiences of the HIV community of Leicester, Leicestershire & Rutland. We know that not everyone has the opportunity, confidence or ability to have his or her say. As a core group of 15 positive people covering all ages, experiences, ethnicities and time since diagnosis, we want to ensure that positive people have a say in the care, treatment and support services offered.

We are all different with differing needs and this needs to be reflected in the variety of services offered. We need to take responsibility for ourselves and provide a lived experience of HIV. ALhivE provides a platform and a voice for the diversity of positive people in the area.

Patient organisations are peer-led and fulfil the obligation of commissioners to involve patients in their consultations.”

Policy makers, commissioners and NHS service providers find it useful to engage with these groups in order to really understand the needs of patients when planning health and social care services. Existing agencies such as Local Authorities who have new powers around sexual health, and the new Clinical Commissioning Groups, will be seeking the views of public and patients. There could be role for patient groups to influence and engage these agencies, directly or through Healthwatch.

Want to talk about any of the issues raised in this article?

Thinking of setting up a patient group, or have an established group wanting support and to link up with others? Contact Forum Link; phone: 020 7738 0258, email: admin@forumlink.org Living in the Leicester area and want to know more about ALhivE, contact julie.musonda@ alhive.org.uk To learn more about the HIV Activists Network Contact HIVactivist@nat.org.uk on 020 7814 6767 Article originally appeared in Positively UK magazine and was funded by Abbott with no editorial control or input.

Positive Nation | 19

CHARITY SPOTLIGHT THE SUSSEX BEACON

CHARITY SPOTLIGHT THE SUSSEX BEACON THE SUSSEX BEACON TELL US ALL ABOUT WHAT THEY DO, WHY THEY DO IT AND WHAT IT HAS COMING UP About The Sussex Beacon When we opened in 1992 four people a week died of AIDS at our centre. Thanks to huge advancements in drug treatments, we now mainly care for people coping with the challenges of living with HIV. What we do The Sussex Beacon offers specialist care and support for men, women and families affected by HIV. We operate 365 days a year to help people manage the everyday realities of living with this life-long illness.

Our 10 bed Inpatient Unit helps people recovering from serious HIV related illnesses, initiating new drug therapies or struggling with some of the extreme side effects of anti-retrovival drug regimes.

We provide emotional, mental and health support along with physiotherapy and occupational therapy. We also offer end of life care.

effects from medication. They also often endure stigma and discrimination.

• The side effects of HIV medication and effects of the virus itself can cause further complications including heart disease, early- onset dementia and cancer.

Psychological and social issues are also common such as difficulty finding employment and family and relationship breakdown. Many of these issues are exacerbated by stigma around HIV. • Diagnoses continue to rise. In 2012 there were 100,000 people living with HIV in the UK, 26% of these are estimated to be undiagnosed.

• Our service users face additional disadvantage, most are on low incomes, struggling with mental health or housing issues and most of our women are from minority ethnic communities. Lots of our women are diagnosed HIV positive

on becoming pregnant; they may have young children or be living with trauma following rape or fleeing conflict.

• Long-term use of medication used to treat HIV often ages peoples’ organs prematurely by around 15 years – this can lead to more complex health needs, sooner in life.

Together with specialist care and support someone living with HIV can live a long and healthy life. With your support we can create positive futures for people living with HIV. The Brighton Half Marathon Organised by The Sussex Beacon Brighton Half Marathon, the race is in its 24th year, it takes place in Brighton on Sunday 16th February 2014, starting and finishing on Brighton’s seafront. The 2014 race sold out in record time with entry closed by

Our Outpatient Unit for health management offers psychological support such as anxiety and sleep management and treatment. We run services for women and families and a regular day service for socially isolated people with complex medical conditions associated with HIV. Why we really need your support • HIV remains a serious, life-changing, life-long condition with, as yet, no cure.

• HIV is unlike any other illness. People report chronic pain, anxiety, insomnia, depression, social isolation and side 20 | Positive Nation

A runner at the 2013 Brighton Half Marathon

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CHARITY SPOTLIGHT THE SUSSEX BEACON

Above and below - Picutres from the 2013 Brighton Half Marathon

the end of June. However, some charity places are still available, all the details are online; www.brightonhalfmarathon.com/ charities. 11,000 runners will be taking to the streets of Brighton & Hove in February, with the Brighton Half Marathon the first major half marathon in the new year. It is also the perfect training ground for all spring marathons and generally sees a mix of first time half marathon runners, club runners, personal-best chasers and charity runners lining up on the start line.

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Charity fundraising is a key part of the Brighton Half Marathon. The event is organised by The Sussex Beacon, the headline charity, and it is their main fundraising event.

There are still charity places left for runners to be part of ‘Team Beacon’ or some of the other charity teams, details and registration online at; www. brightonhalfmarathon.com/charities Event Manager Paul Bond commented: “The Brighton Half Marathon is now

more popular than ever, with a beautiful route mostly along the seafront, an iconic city location and a great atmosphere.

Runners can still take part in next year’s race by choosing to run and raise money for one of the official charities. Running for a charity is extremely rewarding and it will help you to remain focused and motivated throughout your training.” www.brightonhalfmarathon.com/ charities and visit www.sussexbeacon.org.uk

Positive Nation | 21

rarely used) and will soon apply to efavirenz too.

Newly diagnosed?

New questions?

Generics New generic drugs are increaslingly more popular - but what are the facts? Every person, newly disgnosed or otherwise needs to know about them. i-Base answers the questions.

The website (www.i-Base.info) includes an online Q&A service where you can email questions that will be answered online or emailed back to you privately. There are now over 1500 online questions and answers that cover a wide range of subjects, including questions asked by those newly diagnosed.

Question: Will generic 3TC be as effective as the older version? I have been taking 3TC as part of my HIV treatment for the last five years. Recently my doctor asked me to change to a generic version, because it would save the NHS money. Is there anything I should be worried about?

Answer: 3TC is one of the first HIV drugs to become available as a generic. It has the same active ingredients and switching is safe and easy. The active ingredients found in generic drugs are the same as in the brand-name version. Although the inactive ingredients may be slightly different, these 22 | Positive Nation

are all safe and regulated and commonly used in other medicines.

Some generics may be a different size, color or shape of the pill. Although a generic drug might look or even taste different it will work in the same way. One of the generic versions of 3TC even has the same white diamond shape of the original.

3TC is one of several HIV drugs whose patents have recently run out in the UK. This means that, for the first time, the NHS is able to prescribe generic versions of these drugs. This also applies to nevirapine 200mg, Combivir (AZT+3TC, which is

The change to generic ARVs is broadly a good thing. Approximately 60-85% of all NHS prescriptions use generic drugs. This is how the NHS is able to provide services. The London HIV Consortium is responsible for commissioning HIV services including drug purchasing across London. They have recommended that generic HIV drugs which are “like-for-like” with branded versions should be used if this is cost-saving.

So anyone using 3TC in London will be changing to a generic version that is cheaper, but just as effective.

When changing to a generic version, your doctor should discuss this with you first and you should have the chance to ask any questions that you are worried about. Even after you have agreed to change you should still be able to discuss any worries with your doctor.

Question: Do London patients have to switch from Viramune 400 mg to generic nevirapine 200 mg?

I have been on nevirapine (Viramune) 400 mg for two years. This is the slow release formulation where I take one tablet a day.

My clinic has recently decided that I am going to change to take two x 200 mg nevirapine tablets together each day.

The clinic says that the 200mg tablets are generic and that they are cheaper. I really want to understand if this is the same as the slow release version I am on right now.

I understand why you would change to a generic drug that was the same as something you are on, but I am worried since these tablets are different doses. I am angry because at my last appointment, my consultant never mentioned this. It was only when I went to collect my meds that the pharmacist started explaining the change. I refused to take it as I think any change of meds should be discussed with the doctor. I don’t want anything to mess up my treatment just to save money. My life is precious and I pay enough taxes that I deserve to be given the best medicines.

Answer: As with the question about 3TC above explains the change to generic ARVs is broadly a good thing. When changing a branded drug to a generic drug that is likefor-like there should be no difference in treatment outcomes or side effects.

Nevirapine, though, is a slightly different example because there are two versions of this drug.

1) a 400 mg prolonged release (PR)

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In November 2013, the UK patent for efavirenz will end. This means generic versions of this drug will become available in the UK. Because some of the drugs in Atripla will still be under patent, though, it will not be possible to get a generic version of this fixed dose combination as a single pill.

formulation. This is taken as 1 x 400 mg tablet, once a day (daily total 1 x 400 mg tablet); and 2) a 200 mg original formulation. This is taken as 1 x 200 mg tablet, twice a day (daily total 2 x 200 mg tablets) Only the 200mg formulation is currently available in generic versions in the UK. Technically, the move to generic formulations in the UK is only recommended when switching exactly the same formulation and dose. So, someone who currently uses the original 200 mg version of nevirapine will be asked to switch to the 200 mg generic formulation. This is a like-for-like change and will be just as effective..

The London guidelines are different for people using the nevirapine 400 mg prolonged release formulation. Currently, these guidelines are not asking clinics to switch people from the 400 mg version to the original 200 mg formulation. However, individual clinics in London can have their own policy. At least one large hospital has decided to switch patients from the slow release to the generic 200 mg version, and is recommending that patients use the old formulation once-daily. When this is the case they need to explain the differences and that according to the product label the 200 mg is a twice-daily drug.

This is something for you and your doctor to decide together. You are right to speak to your doctor before making this change. This could easily be something that the hospital decided as a recent policy though, without having explained this to their doctors.

The guidelines for nevirapine are likely to become clearer in the next few months.

This is because a new group is being set up to look out how HIV drugs are used across the country (rather than just at a local or regional level.

Drug pricing is complex and changeable. The switch to generic versions in the UK is based on cost savings without affecting quality of care. The original brand manufacturers may even reduce their drug costs after the patents have expire. If this gets close to the generic prices people may not need to switch drugs.

Question: Should I switch from Atripla to separate generic drugs?

I am currently taking Atripla but I have heard that if I took the same combination in two different pills it would be cheaper for the NHS. I think it’s important that we all do our bit to keep costs down so that the NHS can continue to provide services for HIV positive people. I don’t mind taking more pills if this will help the NHS, but I don’t want to affect how well my treatment is working.

Answer: Atripla contains three drugs: efavirenz, FTC and tenofovir.

Generic efavirenz is likely to be much cheaper than the branded version. Unless the price of Atripla is reduced to reflect this change the individual drugs are likely to be prescribed rather than the single pill combinations.

In the case of Atripla it is likely that people will be prescribed generic efavirenz together with brandname Truvada (tenofovir and FTC). This would mean taking two pills once a day, rather than just one. Alternatively, people could be prescribed branded tenofovir and generic efavirenz with generic 3TC (which is very similar to FTC). This would mean taking three pills once a day.

Changing people from one pill to two pills is likely to be recommended. Whether or not clinics will decide that it is safe to change from one pill to three will be decided by a new advisory group that includes leading doctors, pharmacists and some community representatives.

This will involve deciding whether adherence is likely to be affected. It might result in a pilot study prior to any change.

Medically though, the generics drugs will be just as effective., so long as you remember to take them. This should not have any negative impact on either your viral load or your CD4 count.

Most people find taking one extra pill, so long as it’s still just once a day, doesn’t make a big difference to how they feel about treatment. This isn’t the same as changing from a once daily to a twice daily treatment and the savings will enable other important HIV services to continue.

Under these circumstances, you would be able to ask to stay on the same once-daily formulation because changing from a oncedaily to a twice-daily combination is not approved if the only reason for the change is to make financial savings.

This is even more complicated because in the past it was common for people to take the original 200 mg formulation once daily instead of taking one pill in the morning and one at night. As this is not how the drug is licensed, it has never been approved for this dosing. Taking 2 x 200 mg oncedaily is likely to be similar for most people, especially if they have had an undetectable viral load for several years.

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Positive Nation | 23

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POSITIVENATION.co.uk Date of preparation: July 2013