Positive Nation Magazine Summer Autumn 2012 by Talent Media

THE UK’S HIV & SEXUAL HEALTH MAGAZINE

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THE VIRAL CLOSET ALSO INSIDE • WHAT’S YOUR GOAL | EATING POSITIVELY | NEWLY DIAGNOSED

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Can’t let

my meds mess up my night.. they Can wait…

REGULARS

FEATURES

Foreword – Daniel Charcharos

Positive Eye

UK News

The Scar that Never Leaves You

The Viral Closet - Have you been Inspired?

World News

What’s your Goal?

Eating Positively

What’s New at NAT?

HEP News

The Viral Closet - Have you been inspired?

LIFESTYLE

Newly Diagnosed – New Questions I-Base answer the important questions.

If you don’t take it, talk about it.

Gareth What’s Your Goal?

Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk

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FOREWORD: DANIEL CHARCHAROS

POSITIVE EYE

Welcome

to Positive Nation Dear Readers,

Welcome to the summer/autumn issue of Positive Nation. The last few months have been quite something to behold - especially if you live in London. The good vibes began with the Diamond Jubilee and Andy Murray getting to the Wimbledon Final. These were followed by the usual blip of the England Football Team and the farce that was World Pride. The British summer reached its nadir with the Olympic and Paralympic Games - which have somehow turned Sebastian Coe into a hero once Editor: Daniel Charcharos more. We have all been hearing about the legacy of 2012 and how this will be a generation inspired to take up sport and lead a more healthy lifestyle, which is obviously fantastic, however, do you remember the media uproar when it was discovered that ahtletes in the villiage were given condoms? Seems like a bit of a double standard to me, we should be encouraging people to be heathy in every way. It’s just seems sensible to me to give out condoms when a group of young people get together. Doesn’t it?

Positive East launches 5K Red Run 2012 Following on from the wonderful success of last year’s event, Positive East are delighted to announce the launch of an even bigger and better 5KM Red Run for 2012. Sunday 25th November will see community HIV charity Positive East bring back the 5K Red Run for a wonderful third year. The 5K Red Run, which will take place this year in east London’s Victoria Park, presents an opportunity to bring people together, make some noise for World AIDS Day, and raise HIV awareness.

Enough of me, now get on with reading the issue! Take care,

Daniel and the PN Team with love.

The slow-witted approach to the HIV epidemic was the result of a thousand years of Christian malpractice and the childlike approach of the church to sexuality.. ~Derek Jarman

DISCLAIMER

Last year’s 5K Red Run broke Positive East’s fundraising records, raising over £15,000. Positive East Director Mark Santos said: “after last year’s success, we’re absolutely delighted to launch this year’s event, and to bring the 5K Red Run home to east London. It’s a really fun event which raises significant funds to support people affected by HIV in East London.” The event, which raises funds specifically for Positive East’s HIV testing service in East London, looks set to be bigger and better than ever before. For the first time runners will have the option of taking on either a 5k or 10k route. The event is still free, and for taking part runners will receive the usual limited edition t-shirt, chip timing, and delicious refreshments.

thrilled to be one of the first partners of the 5K Red Run, it’s a fantastic opportunity for our supporters to raise funds for two great HIV charities, whose work compliments each other really well. We are looking forward to having a big team of runners on the day!” Online registration for this year’s 5K Red Run is now open. Just visit www.5kredrun.co.uk for more information.

Positive East is a registered charity: 1001582, providing vital services to the individuals, families and communities of East London who are affected by HIV. Positive East offers a unique holistic provision of welfare, housing, asylum and counselling support, as well as reducing late diagnosis of HIV infection and working towards eliminating onward transmission of HIV through testing and prevention programmes. More information about Positive East and the services available to those affected by HIV can be found on the website: www.positiveeast.org.uk

© 2012. 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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Published by: Talent Media Ltd, Studio 37, The Riverside Building, Trinity Buoy Wharf, London, E14 0JW Tel: 020 7001 0754. Fax: 020 3070 0017. Email: info@talentmedia.org Website: www.positivenation.co.uk

In addition, the event is being supported this year by Positive East supporters MAC Cosmetics. MAC’s Barbara Clocanas stated: “our MAC team are delighted to be teaming up with Positive East at this year’s event. We’ve been working with the charity for a number of years now, and the 5K Red Run is another great way to get involved for World AIDS Day.” The opportunity to take part in the 5K Red Run also comes as a welcome bonus for Positive East’s partners; Deborah Jack, Chief Executive of National AIDS Trust, stated: “NAT are

Respect the enviroment, please recycle this publication. POSITIVENATION.co.uk

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THT Launches UK’s first sexual health resource for Transgender people In a UK first, HIV and sexual health charity Terrence Higgins Trust has launched two new guides with health and wellbeing advice for transgender people. While research into trans health remains patchy, there is a growing consensus that transgender people are at a dramatically increased risk of HIV and sexual ill health. At this year’s International AIDS Conference in Washington, delegates heard that as many as 68 percent of trans women (those labelled male at birth but who identify as female) in the US may be living with HIV. In Europe, estimates of HIV prevalence among trans women range from 11.5 percent to 57 percent. In contrast, HIV prevalence among the UK’s general population is 0.15 percent, rising

to 5 percent among gay and bisexual men. In a bid to drive down rates and improve the health of trans people in the UK, Terrence Higgins Trust has produced two guides; one for trans women and another for trans men (those labelled female at birth but who identify as male). The guides, available online at www.tht. org.uk/transwomen and www.tht.org.uk/ transmen, aim to provide trans people with information and advice on a number of issues, from how to guard against HIV and other STIs, to more specific support for anyone considering or going through gender confirmation surgery – also known as gender reassignment surgery. In addition to health information the guides offer advice on broader wellbeing,

HIV Treatment Restrictions Lifted for Foreign Nations After years of lobbying from campaigners, foreign nationals can now get HIV treatment free on the National Health Service (NHS) in England regardless of their immigration status. Previous government rules meant only people with legal right to be in the UK would get free treatment. All others had to pay for treatment. Campaigners said many people did not get HIV medication because they could not afford it. On 1st October, new rules became effective, meaning treatment became available without cost. Sexual health charities such as the Terrence Higgins have welcomed the government’s decision, which was first announced in February. Catherine Murphy, head of public affairs at Terrence Higgins Trust, said: “Allowing foreign nationals access to life-saving HIV medication is an entirely sensible move. If someone with HIV is on the appropriate drugs, the level of virus in their body is dramatically reduced, making it less likely 6 | Positive Nation

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their infection will be passed on to others. Aside from the public health benefits, this is a sound economic decision too. People with HIV who remain fit and healthy tend not to become seriously ill or require emergency care, which saves the NHS substantial costs further down the line. These changes will therefore protect more people from HIV infection in the UK and save the NHS money in the longer term.”

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including body image, disclosure and relationships. Michelle Ross, Trans Awareness Facilitator at Terrence Higgins Trust, said: “It’s becoming increasingly clear that trans people today face a range of issues that place them at increased risk of infection. We know, for example, that many trans people have ongoing problems around body image and self esteem, which can lead them to take serious risks with their health.

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“We are hugely proud of these new resources, and hope they will give more trans people – both here in the UK and further afield – the support and confidence they need to take control of their sexual health and live happier, healthier lives.”

Helpline Hours Cut The Terrence Higgins Trust, says its national HIV telephone helpline service will now operate at reduced hours, following the loss of government funding. Earlier this year, the government announced it would cease funding for all specialist sexual health helplines, and instead begin the tender process for a new, central public health helpline. THT Direct will now be open for calls on weekdays between 10.00am and 8.00pm. Outside of those hours it will be closed, including at weekends. Genevieve Edwards, director of fundraising, said: “No charity is immune from the recession, but Terrence Higgins Trust is committed to providing the best possible service for the thousands of people each year who depend on us for support and advice around HIV and sexual health. THT Direct has an important role to play in this and we are determined to raise the money to ensure the helpline stays open.” When the helpline is closed, callers will be directed to the information held on Terrence Higgins Trust’s websites.

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Sixteen Jersey Tree of life symbolises hundreds charities share in Herts with who live with HIV/ £250,000 for AIDS HIV Programme More than £250,000 has been shared among 16 Jersey charities as profits from the Channel Islands Christmas Lottery.

A ‘TREE of life’ has been planted in Knebworth Park to acknowledge those living with HIV in the area and those who have died from the disease.

Hertfordshire. A prevented infection saves the NHS around £250,000, a Herts Aid spokesman said.

Estate managing director and patron of HIV charity Herts Aid, Martha Lytton Cobbold joined friends of the charity and political leaders in the grounds of Knebworth house to plant the symbolic Lime sapling on Friday.

Mrs Lytton Cobbold said: “It’s a nice way to mark Word AIDS Day. By planting a living tree it gives a message of regeneration. Perhaps from a winter of suffering – it’s a very positive message. “Herts Aid do amazing work with the county. It’s very important that message is expressed.”

Since December 2011, a total of £431,743 has been given out. The Association of Jersey Charities represents the majority of charitable organisations in Jersey with 280 members. Lyn Wilton, from the association, said: “Times are getting tougher for charities and so many are dependent on our grants these days.

The charity said 853 people aged 15 to 59 are currently accessing HIV related care in the county, but estimate 25 per cent of the HIV population are unaware they have the virus – taking the figure over 1,000. In Stevenage 97 people have HIV, while in North Herts 76 are living with the disease – the third and fifth highest figures in

The British HIV Association, BHIVA, has published figures from its latest audit of HIV testing and diagnosis in the UK. The audit examined the records of more than a thousand patients attending HIV treatment centres across the UK. It shows that over half of patients were diagnosed HIV positive after they had already shown evidence of a damaged immune system, and were suffering physical symptoms such as weight loss or chronic diarrhoea. 8 | Positive Nation

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Overall, 25 per cent of patients missed an opportunity for their HIV infection to be detected earlier because they were not offered an HIV test, despite being seen by an NHS health professional in the years prior to their diagnosis. The number of people living with HIV in the UK is expected to exceed 100,000 this year, and late diagnosis of the condition has been acknowledged by senior health experts as a growing problem. People diagnosed with more advanced HIV have a tenfold increased risk of death in the first year after they are diagnosed when compared to those diagnosed with earlier stages of

was to ensure people were tested and screened at least once a year. “As such, it is crucial that the government, as the leading partner in the drive for universal HCT programmes, leads by example.”

“The campaign has indeed been successful,” he said in Pretoria at the launch of an HCT intensification campaign for public servants. The intensification campaign - aimed at the public sector, forms part of Public Service Month, which runs from September 1 to 30.

It was, therefore, important for the government to step up its campaign within the public sector, ensuring each employee was encouraged to know their status.

Motlanthe said the government’s goal

Employees should encourage and support their relatives to do the same, and promote a healthy lifestyle. Health Minister Aaron Motsoaledi said at the same event that the testing target of 49 percent of public servants, or 637,000, had not been reached by the end of March 2011.

infection according to the Government’s Health Protection Agency.Professor Jane Anderson, Chair of BHIVA said: “Late diagnosis is the single biggest cause of death from HIV in the UK. It increases the risk of HIV related ill-health, of HIV being acquired by others and significantly increases the costs of treatment. HIV is treatable and if diagnosed in time, people with HIV can expect to have long and healthy lives. Sadly opportunities for longer life expectancy for people with HIV are being thrown away by late diagnosis.”

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AusAID spent over 170 million dollars on HIV programs in PNG between 2007 and 2010, but the report says that there is little evidence that AusAID’s support has limited the spread of HIV/AIDS. Public health organisation The Burnet Institute is partly-funded by AusAID, and works in PNG HIV/AIDS programs. Burnet Institute Director and CEO,Brendan Crabb, told Radio Australia’s Pacific Beat that while there are failings in AusAID’s PNG HIV/AIDS program, they need to be understood in context.” Five-to-ten years ago there was predictions that we could be looking at a million Papua New Guineans HIV positive by now, out of the seven million that live there,” Mr Crabb said. “The real number down under, you know is around 50,000.” Mr Crabb says that the lack of detailed and accurate information means that there is little understanding of which programs are successful. Codirector of AIDWATCH, Liz Barret, says high-level scrutiny of taxpayer-funded aid programs will always be a good thing.

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and dependants of public servants. To date only 18 percent of this target had been achieved through the departmental HCT campaigns. “The HCT intensification launch event marks the beginning of a series of activities that will contribute to the attainment of the goal of getting 1.3 million public servants to test and know their status,” the minister said.

These figures would have excluded employees of the state-owned enterprises

Australia’s major aid agency has released a report that criticises the performance of HIV/AIDS-related programs in Papua New Guinea.

BHIVA reveals patients with HIV infections are going unnoticed by NHS The NHS is failing to notice patients who may have HIV according to new research.

“Over 20 million South Africans have been screened for diseases since the launch of the HIV counselling and testing campaign (HCT),” Deputy President Kgalema Motlanthe said last month.

HCT, which was launched in April 2010, is a government-led prevention and HIV testing promotion campaign, central to the National Strategic Plan on HIV and AIDS, sexual transmitted infections (STIs) and tuberculosis (TB).

The event in the run up to World AIDS Day on December 1 is part of a year-long Herts Aid initiative to raise awareness of the needs of people with HIV and to destigmatise the disease. Funding from the lottery, which has run since 1975, is shared out by charity associations in Guernsey and Jersey. The biggest single donations are £30,000 each to five charities to fund a HIV programme, pay staff salaries and improve building or facilities.

South Africa launches HIV testing campaign

“I think it’s actually completely critical to have quite open discussion about programs, how they operate, how they benefit the community and the impacts.” Ms Barret adds that while the report provides valuable scrutiny of the AusAIDsupported HIV programs in Papua New Guinea, it’s yet to be seen if the report will be acted upon. “I think implementation is always the difficulty in these things and we would imagine that AusAID, post this report being published, would be taking on the recommendations from the report and how to implement that,” she said.

HIV tops Ugandan hospital deaths While antiretroviral therapy (ART) is key to fighting HIV-related deaths, many people in Gulu, Uganda continue to be claimed by HIV/AIDS because they either don’t take medication, fail to respond on medication, or start medication late. According to the director of Gulu Regional Referral hospital, Nathan Onyaci, the syndrome accounts for about 60% of the deaths at the facility. In the financial year 2011/2012, the hospital registered 315 deaths, 180 of them due to HIV. The previous year it was 250 out of 424 deaths. Onyaci says some people shun ART for fear of being stigmatized. Walter D Anywar, a programme officer at Health Alert Uganda, however, says some people with HIV in rural Gulu can’t access ART as they live far away from health facilities. At least 1,639 people have, this year, tested positive with HIV/AIDS at Gulu hospital, with an infection rate of 13.4%. Some 545 pregnant women tested HIV positive under the prevention of mother-to-child transmission initiative, nearly 9% of these passed the virus to their unborn babies. Positive Nation | 9

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FEATURE: POSITIVELY UK The city’s health department issued an alert for “gay men and men who have sex with men.” The outbreak includes a dozen cases in the last two years, but it seems to have accelerated with four cases in the last month. Of the 12 total cases known four died.

Goa govt launches SMS alert facility for HIV patients The next time a HIV patient in Goa misses their monthly drug regimen, they will get an SMS alert reminding him about the dosage. The state-run Goa State AIDS Control Society (GSACS) has worked out an arrangement with various mobile service providers in the coastal state to launch this unique facility. GSACS Project Director Dr Rajnanda Desai said that several patients are irregular in taking the drugs, which can worsen their situation or force them to the next level of treatment. “It’s a big challenge to ensure that they (patients) don’t skip the medicine,” she said, adding that the state government’s Information Technology Corporation has helped the project by developing the special software. “In many cases, patients don’t understand the seriousness of taking treatment. Many a times they tend to forget to take it. SMS alert will help them,” she added. According to GSACS officials at times they tried calling up patients on regular basis but the task became cumbersome as there are thousands of patients who are on the treatment.

HIV positive men at risk over meningitis outbreak in New York A deadly cluster of bacterial meningitis has erupted among HIV positive gay men in New York City. It’s left one person dead in the last month and another in a critical condition – according to the Associated Press. 10 | Positive Nation

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The inmates are from Russia, Turkmenistan, Uzbekistan, Kenya, UK, Pakistan and Nigeria. They were convicted of various offences, including financial crimes, drug possession, robbery and murder. One of the inmates was previously on death row but the sentence was commuted to prison for an All four of the men recently diagnosed indefinite period after the family of the are between the ages of 31 and 42, which man he killed forgave him. the department says puts them at a much greater risk than the general population. HIV-positive prisoners are kept in a separate ward at the Dubai Central Prison Investigators are trying to find out how in Al Aweer and cannot mingle with the outbreak has managed to spread. other inmates. “This country does not People the men were in close contact accept HIV patients. If you were free you with have been treated with antibiotics. would be deported if you were infected. Bacterial meningitis can cause swelling It is a difficult stigma,” said Michael Bryan of the membranes covering the brain Smith, a 43-year-old Briton who signed the petition. “Some guards are OK but and spinal cord. others wear masks and rubber gloves The disease is rare, but people with HIV when they handcuff us.” and weakened immune systems are Mr Smith was convicted in a financial case more susceptible to infection. after being extradited from Thailand. He found out he was HIV-positive while in prison. He said some prisoners did not receive proper medical treatment.

HIV-AIDS Dubai prisoners’ plea for freedom Ten prisoners with HIV-AIDS have asked to be freed on compassionate grounds. The inmates, at the Dubai Central Prison, submitted a petition to the public prosecution yesterday. It asks for them to be released so they can spend the rest of their lives with their families. The petition is addressed to Dubai’s Attorney General, Essam Al Humaidan.

“They do as well as they can but they sometimes cannot deliver the medicine on time,” said Mr Smith, who claimed he suffered tuberculosis as a result of waiting. Earlier this year a medical pardon was granted to a number of prisoners with HIV-AIDS, a decision the 10 inmates hope will be repeated. “We hope now you will consider our pleas as we all suffer the same incurable infection and, in most cases, have been imprisoned for a longer period of time than those released,” the letter reads. Mr Smith said: “We heard of the amnesty and thought we would be released as part of the pardon.” A prison official said: “The health of each prisoner plays an important role, but we do not know the exact criteria the pardons are based on. The public prosecution studies each case and takes

“That scar never goes; it never leaves you”: The legacy of violence against women with HIV The lack of research into violence against women living with HIV in the UK has meant that its impact is largely underestimated. While international studies have reported links between gender-based violence (GBV) and HIV, the UK is yet to recognise these links. A study in Tanzania reported that women with HIV are ten times more likely to experience gender-based violence than those without . Anatomically, women are more vulnerable to contracting HIV than men, especially if forced or coerced into sex, and distorted power structures in relationships often result in women being unable to negotiate safer sex practices. Violence may also impair access to testing, treatment and medication. However, few formal research reports have been published to determine whether the experiences of women living in the UK mirror those of women globally. To raise awareness of the interaction between GBV and HIV, Positively UK, working alongside Sophia Forum, PozFem, Salamander Trust and WECARe+, presented a poster at the recent British HIV Association conference highlighting the issue and proposing recommendations for policy and research. The data were elicited during a focus group discussion with six women living with HIV in the UK. Each participant had experienced GBV, either from partners, family members, neighbours or service providers. The discussion found that violent relationships often became more violent following HIV

“It is our greatest wish that we may return to our families, who are unable to be in Dubai, so that we can share with them the time we are granted in happiness before our health fails,” reads the letter. POSITIVENATION.co.uk

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diagnosis, while the complex emotional bonds with persecutors combined with the stigma around both HIV and GBV, made women reluctant to seek help. This is particularly significant when immigrant women are legally, financially and psychologically dependent on the perpetrators of violence because their residential status is tied to their partner’s. One of the participants described how her husband exploited her ignorance of the UK: ‘‘He applied for DLA (Disability Living Allowance) and in arrears got £3,000, which I said should go towards bills. He said, ‘No, I have to give at least half of that to the person who sorted it out.’ I thought, ‘fine’ because that’s the sort of thing that would happen at home, but it was complete nonsense!’’ Moreover, women coming from countries where violence against women is perceived differently may not even recognise that they are experiencing discrimination. Another participant explained that ‘‘if someone asked me, ‘have you faced abuse?’ I’d say ‘no’. It took me a long time to actually say, verbal abuse is also violence. A lot of women, especially African women, suffer in silence because these definitions aren’t clear.’’ The focus group used an empowerment approach in its discussions, with strict ethical guidelines ensuring the security and safety of participants. They called for ‘‘a world where women with HIV feel safe, respected and secure; where they can experience physical and psychological wellbing and fair treatment: a world where power is shared.’’ They want the government to formally

recognise the link between GBV and HIV and for healthcare professionals to be better trained in identifying signs of violence. They also observed that HIV and GBV advocacy organisations should work collaboratively to ensure that women living with HIV no longer face the double burden of illness and violence.

Article by Kate Seeley, Research Associate at Sophia Forum Positively UK – www.positivelyuk.org

Violence against positive women is any act, structure or process in which power is exerted in such a way as to cause physical, sexual, psychological, financial or legal harm to women living with HIV – Hale & Vazquez, 2011

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FEATURE: THE VIRAL CLOSET

But what does ‘inspire a generation’ mean to people living with HIV? Greg Louganis won two Olympic Gold medals in diving in the 1988 Olympics.

The Viral Closet

the optimum time, leading to a far greater likelihood of illness and death.

Matthew Hodson of the gay men’s health charity GMFA, reflects on the inspiration of people openly living with HIV.

2012 – what a year it’s been! Throughout the summer we witnessed amazing feats of athleticism from Olympians and Paralympians and the ringing mantra of ‘inspire a generation.’ It’s way too early to tell whether the numbers of people running, rowing, swimming and so on will actually increase once the glow of our Olympic summer has faded but, for a few glorious weeks, it felt that we may be limited only by our (all too often) narrow expectations. But what does ‘inspire a generation’ mean to people living with HIV? Greg Louganis won two Olympic Gold medals in diving in the 1988 Olympics. At the time he knew that he was living with HIV but it was another eight years before he felt able to disclose his status to the world, in his autobiography, ‘Breaking the Surface’. Ji Wallace (pictured above right), an Australian trampoline silver medallist from the 2000 Sydney Olympics, came out about his HIV status this summer. But from current athletes there is not a peep. Of course, this isn’t surprising. Athletes are reliant on sponsorship, and any admission of homosexuality, let alone of disease, is unlikely to help secure those all-important contracts. After coming out about his HIV status, Louganis was promptly dropped by most of his corporate sponsors, with the notable exception of Speedo. But if people living with HIV are looking for inspirational figures who are open about living with HIV we’re not going to have much 12 | Positive Nation

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joy looking at any of the other categories of celebrities either. In the world of music I could name Holly Johnson and Andy Bell. In politics, Britain’s first openly gay MP, Chris Smith, now Baron Smith of Finsbury, again demonstrated his willingness to lead the way by being open about his HIV status, although not until after he had left the cabinet. I’m sure there are others, perhaps more from around the world, but considering the millions of people who are now living with the virus globally, the list of people in the public eye who do so openly is exceedingly short. Increasing invisibility Of course it’s a big ask. Even if I knew of celebrities who were living with HIV but had made no public statement, I wouldn’t dream of ‘outing’ them. One’s health is, definitively, a personal matter. But wouldn’t it be good if there were more role models of people living with HIV who felt able to be open about their status?

do pretty well on their medication, far fewer people have visible symptoms of infection. And for many people, if there’s no need to explain, why would you raise the subject? But does it matter? The problem with this is that for many people (uninfected or undiagnosed) they have no idea how much the situation has changed for people with HIV since combination therapy became widely available, in some countries at least. When I talk to student groups their perception of HIV (if they have much of one at all) is stuck in the 1980’s: Tom Hanks waltzing with an IV in the movie Philadelphia; emaciated faces from old Benetton ads, the tombstone from the early Government campaign. The thought that people living with HIV are working full time, in jobs as stressful or as trivial as any other section of society comes as a shock.

Despite the increasing numbers of gay men living with HIV, data from the gay men’s sex survey finds that the number of gay men who believe that they know anyone who is positive is going down. That’s just extraordinary.

And the increasing invisibility of HIV has a huge impact on our efforts to prevent new infections. If someone can go out on the gay scene and kid themselves that they don’t know anyone living with HIV, it must be easy to imagine that they’ve never had sex with anyone with HIV. And if they’re not having sex with people with HIV, why should they care about safer sex?

Back in the bad old days, before treatment was effective, people were similarly reluctant to be open about their status, but people would often be forced out of their viral closet when they got ill. Nowadays, as most people

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The old images of inevitable and rapid death make many so fearful that they can’t bring themselves to test. And the great irony is that fear of finding out means that, if they do have HIV, they won’t access treatment at the optimum time, leading to a far greater likelihood of illness and death. It’s a gay thing… The need for role models is going to be familiar to men like me - gays of a certain age. I grew up in an era when inequalities, in the age of consent, criminal justice and our ability to serve our country, were enshrined in law. The main depiction of homosexuality that I can recall from childhood was John Inman’s character on ‘Are You Being Served?’ Coming out as lesbian or gay to family or colleagues was an act of exceptional bravery. Coming out in public life was rare, and many of those who did come out were dragged out, unwillingly, by tabloid exposes. But we had a weapon that was capable of changing hearts and minds. We knew that when someone encountered gay men or lesbian women in their lives, in their families or workplaces, or even when they saw gays and lesbians on television, it could have a huge impact on their perception of what it meant to be gay. The power to change society was in our own hands. If we had the courage to be honest about who we were, to our friends, family and colleagues, we could change attitudes and we could change the world. Fast forward to today. Whilst prejudice is far from eliminated, it is no longer considered an act of unusual bravery to be open about your sexuality. Our rights as employees are protected, so we can’t

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be sacked for being gay. Celebrities, such as Jim Parsons of the Big Bang Theory or Zachary Quinto of the Star Trek movies, are now more likely to ease themselves out of the closet with a casual reference to their same sex partner, than come out with a great big fanfare as such stars once did. And it’s a good thing. There are still struggles ahead (equal marriage rights are far from a done deal) but the progress we have made in a relatively short period of time has been immense. And this progress would not have been possible without those who were brave enough to risk their friendships, their jobs and even their lives to stand up and proudly declare their sexuality.

HIV in our society. The more people there are who are willing to answer questions, address concerns, and challenge myths and prejudice, the more informed the coming generations will be. We may not all have the power to be Olympians, but we may yet inspire a generation.

For positive people, we are now somewhere akin to where homosexuality was two decades ago. We can change this. We can let people know that there are people living with HIV in their workplaces and their families, in the pubs and clubs that they visit and in the churches where they worship. My inspirations So I salute all those members of the HIV community who have had the courage to stand up and say, ‘Yes, I have HIV’. I’m thinking of people like Kristian, Winnie, Gus and Caroline, many of who often grace these pages, and who talk honestly, wittily, and intelligently about living with the virus. These people inspire me. By the way, I believe that my own story is insignificant but, on the basis of trying to be the change that you want to see in the world, I guess I should declare that I have been living with diagnosed HIV for thirteen years now. You probably thought as much already. With effective medication, regular exercise and, most importantly, the love and support of my friends, family, colleagues and husband, I expect to be around for quite some time to come.

Every Monday evening GMFA hosts Positive 21, a support group for gay and bisexual men living with HIV in London. If you are interested in joining the group, email michael.flaherty@gmfa.org.uk for more details. GMFA’s information website for gay men living with HIV is at; www.gmfa.org.uk/positive.

Being open about your HIV status is still a brave thing to do. But the more of us that there are, the easier it will be for all. There is far too much ignorance about

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Food and Nutrition

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Eating Positively 5-A-Day

by Sharon Burt, RNutr

When we are living with HIV it is important that we get a good intake of vitamins and minerals everyday to ensure that we are giving our immune system the best possible support that we can and also helping to maintain good health.

Vegetables; Five spears of fresh asparagus, Three heaped tablespoons of ackee (canned), Two handfuls of bean sprouts, Three heaped tablespoons of carrots, Four heaped tablespoons of runner beans.

Fruit and vegetables are a great source of vitamins and minerals. Ideally we should be consuming at least five portions a day of a variety of different coloured fruit and vegetables. Fruit and vegetables are good for us because:

You can also think of one portion as being equal to the amount that you can fit into one hand, e.g. a handful. It is quite easy to introduce five portions of fruit and vegetables into your daily diet. Here are some examples:

- as well as supporting the immune system, the vitamins and minerals they contain are essential for the correct functioning of bodily systems, such the breakdown of nutrients to provide energy and the building of soft and hard body tissues, such as muscle and bones1.

Breakfast: Slice one medium banana onto breakfast cereal, Drink one 150ml glass of fruit juice Lunch: Include a five centimetre piece of cucumber and one medium tomato in a salad Dinner: Have one corn on the cob or half a large courgette with your evening meal.

- they contain antioxidants – particles that prevent cell and tissue damage, reducing the risk of heart disease, stroke and cancer2. - they are a good source of fibre. Fibre helps to relieve constipation3, reduces blood cholesterol4, aids in the regulation of blood glucose5 and reduces the risk of bowel cancer6. What is one portion? If you have some kitchen scales one portion is 80g of edible fruit or vegetable. If you don’t here are some examples of how to work out what one portion is: Fruit: One medium orange, Six halves apricot (canned), One handful of grapes, One slice of papaya (pawpaw), One heaped tablespoon of mixed dried fruit.

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However, if you can have a mixture of nine portions of fruit and vegetables a day, this is more likely to provide the optimum amounts of vitamins and minerals your body needs. Here is an example of how you can incorporate four more portions a day into your diet: Mid morning snack: One medium apple Lunch: Two kiwi fruit for dessert Afternoon snack: Three dates or one heaped tablespoon of raisins Dinner: For dessert have one large slice of fresh pineapple or two small Satsumas

One glass of fruit juice counts as one portion but as juice does not contain any fibre drinking more will not count towards your five a day. Fruit smoothies count as two portions of your five a day because they contain the edible pulp (fibre) of the fruit7. When eating fruit and vegetables avoid drinking tea as the tannin in tea impairs the body’s ability to absorb iron8. Also, over cooking vegetables will destroy their vitamin C content9. Try steaming your vegetables so that none of the essential nutrients leach out into the water. For more information on how to keep healthy when living with HIV take a look at The Food Chain website, www.foodchain. org.uk. Here you will also find details about Eating Positively classes, a series of FREE cookery and nutrition classes for people living with HIV who would like to make informed choices about nutrition.

References: 5 A Day portion guide downloaded from http://www. nhs.uk/Livewell/5ADAY/Pages/Portionsizes.aspx (23/8/2011) 1. Mann, J., Truswell, A.S. eds. 2004 ‘Essentials of human nutrition second edition’ Oxford: University Press 2. Mann, J., Truswell, A.S. eds. 2004 ‘Essentials of human nutrition second edition’ Oxford: University Press 3. Pribram, V. Ed. 2011 ‘Nutrition and HIV’, Chichester: Blackwell Publishing 4. Pribram, V. Ed. 2011 ‘Nutrition and HIV’, Chichester: Blackwell Publishing 5. Mann, J., Truswell, A.S. eds. 2004 ‘Essentials of human nutrition second edition’ Oxford: University Press 6. Mann, J., Truswell, A.S. eds. 2004 ‘Essentials of human nutrition second edition’ Oxford: University Press 7. 5 A Day Portion Sizes http://www.nhs.uk/ livewell/5aday/pages/portionsizes.aspx (accessed 24/10/11) 8. Mann, J., Truswell, A.S. eds. 2004 ‘Essentials of human nutrition second edition’ Oxford: University Press 9. Gaman, P.M., Sherrington, K.B. 2004 ‘The Science of Food Fourth Edition’ Oxford: Elsevier ButterworthHeinemann

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15/11/2012 10:30:47

FOCUS: HEPATITIS

Tate screening celebrates the life of Lance Loud

Exclusive dinner party invitation to Boy George’s house to raise awareness for The Hepatitis C Trust This Christmas, The Hepatitis C Trust is reviving its healthy eating campaign, The Great British C Party, with TV chef Gizzi Esrkine. Gizzi will be cooking up an alternative vegetarian Christmas dinner at Boy George’s house which kicks off a nationwide healthy eating campaign that encourages people to be conscious of their livers over Christmas.

downloadable menu cards and invites so that supporters could hold their own dinner parties and raise funds and awareness for the charity.

Liver disease is on the rise in the western world, while viral hepatitis is one of the main culprits, fatty liver caused by a bad diet is another reason for the upsurge in liver disease. A good diet can help alleviate the symptoms of hepatitis C, meaning more energy and fewer visits to the doctor.

A host of well-known chefs submitted recipes in support of the campaign, among them were Raymond Blanc, Mark Hix, Ken Hom and also Antonio Carluccio who initially mischievously sent in a recipe for liver! When questioned, Antonio’s PR said that it was his quirky sense of humour, but relented by sending a new recipe for Fagottelli Di Granchio, (crab parcels). The healthy fast food chain LEON donated some cook books and as well as a collection of recipes, while The Clink Prison restaurant held its own C Party.

The Great British C Party was originally launched on World Hepatitis Day 2011. Gizzi Erskine helped set up the campaign, and designed and filmed a three course dinner party menu which was posted on The Hepatitis C Trust’s website. The idea was to inspire people to follow Gizzi’s lead or to make their own healthy recipes. The Trust set out a food fact sheet with a list of foods that nourish the liver with nutritional explanations. Also available were

This year, our hope is to extend even further with this campaign by instilling a festive theme and encouraging people to host C Parties over the Christmas season. Gizzi is the perfect spokesperson for The Great British C Party; she champions healthy eating without necessarily denying oneself anything, especially Christmas puddings. The C Party is not designed to be sanctimonious or to preach; it is there to show that healthy eating can improve your life as well as being fun

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and delicious. If you would like to get involved with this year’s C Party and host your own then please contact; media@hepatitisctrust.org.uk for more information.

This summer on July 4 The Hepatitis C Trust and the Tate collaborated on a screening of Lance Loud: A Death in An American Family, directed by Alan and Susan Raymond. The screening was to highlight the rise of HIV/hepatitis C coinfection. Lance Loud was co-infected and it was liver failure from the hepatitis C virus which killed him in 2002. If you read our article in the spring addition of Positive Nation then you’ll know how much we were looking forward to this event. Lance Loud is a household name in the US but virtually unknown here in the UK. He is lauded as being the first reality TV star after his appearance in the 1973 television series An American Family, which filmed the Loud Family over several months, resulting in 12 hours of television which had the American public compelled and appalled. The Loud family were Pat and Bill Loud and their five children, of which Lance was the eldest. During the 12 episodes, Pat and Bill get divorced and Lance famously came out, earning him his other epithet, the first openly gay man on US television. The Tate’s curator of film, Stuart Comer, suggested we show Lance Loud: A Death in An American Family alongside episode 2 of An American Family, the episode which sees Lance living at The Chelsea Hotel in New York, and out at Max’s, the hangout of Andy Warhol and his clique. We were very lucky to have Alan and Susan Raymond come over to the UK especially for the screening and to help The Hepatitis C Trust with publicity and promotion. Alan and Susan filmed the original TV series and stayed in touch with the Louds over the years. Since An American Family, Alan and Susan went on to establish their own production

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company, Video Verité, which has a prolific output of quality documentaries and earned them an Academy Award. In 2002, Lance called Alan and Susan out of the blue to tell them he was dying and asked them to come and film his final days. Alan and Susan were working on other projects at the time but dropped everything to go and film Lance’s final chapter. Susan told us they had known Lance was HIV+ for a number of years but the hepatitis C was news to them and they ultimately sounded his death knell. To engage the public and ensure mainstream radio coverage we enlisted the help of our patron Boy George. George hadn’t heard of Lance prior to our event which is surprising if you consider the rock and roll lineage; George was influenced by David Bowie who was influenced by Iggy Pop who collaborated with Lou Reid who wrote songs about Lance’s crowd, Candy Darling and Holly Woodlawn. We all spent a day doing radio interviews out of a studio in Farringdon and covered the whole of the UK with shows that were either syndicated or went out regionally. Co-infection isn’t a subject for mainstream or primetime radio and George, who is now very adept at hammering home important messaging, coped admirably with the constraints. At the outset of this project both Stuart Comer at the Tate and The Hepatitis C Trust had been very keen to make the event a tribute to Lance as much as an awareness raising exercise. The Trust invited a crowd of people such as Daniel Lismore, Jodie Harsh and Philip Salon who like Lance are influential in effecting change in a community. Boy George kicked the night off with a few words on how brave Lance must

have been to be out and unabashed in the early 70s, adding him to his ‘daisy chain’ of influential gay men who have changed the course of history. In an interview on the BBC after the event, Susan Raymond was asked what Lance would have made of the night. She answered ‘he would have loved it, he would have loved the recognition, the involvement of The Trust and he would have LOVED Boy George being there’. Lance gained a new generation of fans that night at the Tate, but more importantly he highlighted the human cost of co-infection which now affects 9 percent of people who are HIV+. Lance Loud: A Death in an American Family catches Lance at various stages of his life, always handsome and exuberant. At the end of his life, however, he’s emaciated and toothless. Although he retains his charm, humour and even touchingly his optimism, it is shocking to see him in his final throws. Lance wanted this film to be a cautionary tale which is tragically illustrated so graphically by the fact that at 50 years old he doesn’t want to die. There was an excellent turn out of interesting people who engaged with Lance and enjoyed the film. Stuart Comer led a fascinating Q&A with Alan and Susan Raymond which elicited some insightful questions. The reception afterwards was tremendous fun and open to anyone who had bought a ticket for the night. The evening was rounded off with an after-party at Daniel Lismore’s night at Whiskey Mist in Mayfair where he generously gave everyone free entry and drinks. PN

Positive Nation | 17

15/11/2012 10:30:53

Have you ever stopped to think, with any true conviction, what your point is?

and, one hopes, meaningful, than that which can be directed through the use of textbook instruction. I believe, first and foremost, that a goal (or goals), one chooses to set and/or apply to one’s life, should be personal, that is, something that holds a certain level of importance to you. If a goal doesn’t hold personal significance, what would be the impetus to strive for/work towards it? By setting an impersonal goal, not only may you be setting yourself off on a veritable wild goose chase, it may mean little, if anything, to your life, should you attain it. As I alluded to earlier, I believe in the setting of aims along the way to your main goal(s). I believe this to be effective for a variety of reasons: 1. To allow you a series of ‘miniachievements’ along the way, thus providing an opportunity to both selfcongratulate, and motivate yourself, to continue. Should your goal involve adopting a healthier lifestyle, for example, ‘miniachievements’ could include: joining a weight loss group, and losing weight consistently; altering one’s eating, cooking, and shopping habits; or, joining a gym, taking up a new form of exercise, becoming involved in sport etc.

‘What’s your goal?’ By Gareth Have you ever stopped to think, with any true conviction, what your point is? Not so much the bigger question of ‘what is the point of life?’ (let’s face it, who really knows the answer to that?) but, rather: ‘What is the point of me/my life?’; ‘What purpose am I here to serve?’; or, more specifically, ‘What is (are) my goal(s)?’ Personally, I have spent many years somewhat ‘lost’, without any clear direction, nor a main goal, or set of goals, to aim for. In my mind’s eye, I often liken this state to being stranded in a desert without even the briefest of oaises to escape to, or find refuge in, to break the monotony of a seemingly endless barren landscape of a pointless, goal-less, direction-free existence. A more concise image I have pictured when pondering this notion, however, is that of a boat. More specifically, a solitary one on choppy waters, without a tiller, or a sail, and, only very occasionally can the briefest glimpse of land be seen in the far-off distance. This image has played

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a major role in the internal chatter and imaging that I have experienced in recent years, I believe it holds significance to me and my life. I believe the boat symbolizes me, trying to make my way through life (the sea), facing its inevitable ups and downs (choppy waters), without direction (lack of tiller), without a plan to follow (lack of sail), nor a clear direction (the disappearing land). I firmly believe having been without a sense of direction most of my adult-life, without a goal, or goals, in sight, or aim(s) to strive for, life begins to lose any sort of focus, or meaning: How do we experience a feeling of self-satisfaction or selffulfilment, if we do not attain the sense of achievement that comes from a goal met, or a ‘job well done’? Now, I’m not suggesting we all need to set huge goals, per say, but I do believe that, without them, we will allow ourselves to continue in the ‘lost’ and dissatisfied fashion I myself have experienced. Bigger goals are wonderful if you are, in fact, a particularly determined, selfmotivated, and self-disciplined individual. Alternatively, you may be an endless

procrastinator by nature, never serving to fully (if at all) fulfil your good intentions, therefore, beginning with smaller (‘bitesize’) aims, on-route to your bigger endgoal(s), is kinder on yourself, and allows you to take ‘baby steps’, thus, creating a sense of achievement more often. The setting of aims, goals and, ultimately, the finding of one’s direction, therefore, is a personal thing and, however you choose to do it, it should be tailored to your personality, your attributes, your life. How do we go about setting our goal(s) then? …. Now, I’m not going to pretend to be an expert in this field, given that I have veered wildly between not having a goal, or goals, and endlessly drifting along in this fashion, or, setting a goal, and not applying myself in the appropriate fashion to ensure it is met in a manner which satisfies me. I could also trot out a textbook answer that any goal you set for your day, week, month, year, and beyond(?), should be SMART, that is: Specific; Measurable; Achievable; Realistic; and, Timed. However, our lives are a little more delicate, personal

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2. To provide you the opportunity to review your achievements/progress thus far, re-confirm your main goal(s) and/ or direction, or, perhaps, alter it altogether as appropriate. Should you wish to change career, for example, opportunities for review and evaluation could include the researching and choosing of training courses, new skills learnt and/or qualifications attained, new contacts gained, appointments made, and interviews attended etc. 3. Sometimes life ‘gets in the way’, throwing obstacles in your path, threatening to throw you off course if you let it. By providing oneself with an opportunity to pause and ‘take stock’, you can renew your determination to move forward, once again, when circumstances allow you to do so. For example, I have recently been working towards attaining some skills in holistic massage therapies, had already completed two workshops, and had enrolled on a further course at my local college in September 2012. Due to circumstances beyond my control, however, the course was cancelled. Whilst I hope to carry out a similar course in a different college in January, I used this delay in my plan as an

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opportunity to evaluate my position. Thus, I am currently completing an alternative course at a local community centre in the interim period. I look forward, however, to my course in January. I also believe there should be an element of enjoyment tied up in one’s goal(s); whilst it is admirable, and often necessary for one’s personal development, to choose a goal(s), which one has to strive for, is there something, too, which might provide you with some joy along the way? Personally, I have found that I am enjoying my massage training thus far; providing massage treatments to clients gives me a ‘grounded’ sense of inner peace, and a feeling of great joy and satisfaction, thus motivating me to continue my training, develop my skills further, and work towards my (quite recently formulated) goal of becoming a self-employed (at least in part) Holistic Massage Therapist with greater determination. Once we have chosen our goal(s), then, how do we ensure the successful attainment of them? I have put together some ideas .... 1. Be realistic in the setting of your goal, however, don’t underestimate your ability either. 2. Evaluate your ability to fulfil each goal; Can you succeed alone, or do you need the help of others? or, Do you need training, for example, to learn new, or develop existing skills? 3. Do not leave it ‘open-ended’, a deadline can be a great incentive. Give yourself a realistic schedule, or time-frame, to achieve each aim, and fulfil your goal(s). 4. Be aware that obstacles can, and will, occur. Anything worth attaining may, and should, prove somewhat difficult. Challenges should be met and adversity overcome, they are what makes us stronger, more capable people. 5. Ask for help, should you need it. Other people can provide wisdom and knowledge, a ‘shoulder to cry on’ when things go ‘wrong’, or a ‘helping hand’ when required. We all need help in many ways and should not be afraid, nor hold back, in the asking for it.

6. Use, and listen to, your gut instinct; it never lies! Other people cannot tell you what is/is not, ‘right’ for your life, only you can truly know that. Ask for, and listen to, advice should you require it, but you need not follow it out of a sense of obligation. 7. Attributes like determination, self-motivation, self-discipline, and selfbelief can be alien to some (including me). Move forward anyway, even in the apparent absence of these traits, and you may find yourself developing them over time. 8. Changing one’s goal(s) and/or direction altogether does not equal failure. If you tried something that didn’t work out, try something else! 9. Celebrate your successes! We often extend so much energy in selfcriticism, why not, then, congratulate and ‘pat ourselves on the back’ with as much gusto? 10. Something can, and will, be learned from everything; from other people, from obstacles and challenges faced and adversities overcome, to mistakes made, to taking a pause in, or altering altogether, one’s course of action, and from each success. Of course, the above are just ideas I came up with myself, however, recent personal experience has taught me that setting a goal, taking the first baby steps towards the attainment of it, whilst keeping the above points in mind, has given me the sense of purpose, and direction I have sought for many years. I urge you, therefore, whatever stage of your ‘journey’ you’re on, to take a pause, ‘take stock’ and, if you, too, are without a goal(s), or a sense of direction, as I have been, take that first step, and take control of your life. It may be unsettling, frightening even, but it’s a lot less scary than the alternative. Remember this: “It you do what you’ve always done, you’ll get what you’ve always gotten” (A. Robbins) Much Love, Gareth xo

Positive Nation | 19

15/11/2012 10:30:54

FEATURE: THE NATIONAL AIDS TRUST

What’s New at NAT? In six months time, major NHS reforms will come into effect. These changes will transform the way that health, public health and social care services will be planned, paid for and delivered in England - and the transition has been keeping us very busy at NAT. As you are probably aware by now, in future the NHS will have a much more local focus. Primary Care Trusts (PCTs) will be abolished and replaced by GP-led Clinical Commissioning Groups, who will plan most health services. HIV treatment and care will still be planned centrally, but local decision makers will have an increasing impact on the other services needed by people living with HIV. Local councils will continue their responsibility for social care, take on public health responsibility, and also host the local Health and Wellbeing Boards (HWB), the forum in which most health and social care decisions will be made in future. In this new landscape, the role of individuals and local communities is more important than ever, to ensure the planning and delivery of services reflect the needs of people living with, and affected by, HIV. We all need to become activists, and one of NAT’s priorities this year is to help empower people living with HIV and communities most affected by HIV to have their voice heard in the new health and social care system. We are working with people living with HIV and experts in HIV care and support services to create a ‘map’ of the way that services will work in future and to clearly explain what people are entitled to and should expect from their HIV services. We will be looking at: HIV treatment and care, GP services, other hospital treatment, social care, mental health and other services which are important to people living 20 | Positive Nation

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with HIV. There will also be advice on how people living with HIV and their communities can get involved with decision-making and help shape services in their local area. Our HIV Activist Network members are already getting involved with decisionmaking in their own area, by asking their local councillor how HIV is being considered in their Joint Strategic Needs Assessment (JSNA) – the assessment of an area’s health and social care needs which forms the basis for all local planning and decision making around services. Activists are also asking how people living with HIV and the organisations who support them have been (and can be) involved in the process. The NAT Policy Team has also been talking directly to decision-makers from areas with both high and lower HIV prevalence (a ‘high prevalence’ area is where at least two in everyone 1,000 people is diagnosed with HIV) about how they plan to identify and meet the needs of people living with and affected by HIV. We will identify examples of good practice in providing services for people living with HIV and make sure that those responsible for planning services across England are aware of these. Despite the new local focus, there are still important developments at the national level. A new body, the NHS Commissioning Board (NHSCB) has been created. It will be responsible for planning treatment and care for conditions which need specialist knowledge, including HIV. NAT’s Yusef Azad sits on the HIV clinical advisory group, which provides expert HIV advice to the NHSCB, alongside clinicians and two people living with HIV.

The NHSCB will also be responsible for all healthcare (including HIV) services for prisoners and people in other detention settings. Currently, PCTs are responsible for detention centres in their local area, and there is quite a lot of variation in what detainees living with HIV receive in practice, even though they are entitled to the same range and quality of care available in the rest of the NHS. NAT hopes that the NHSCB’s role will lead to more consistency and a high level of care for all detainees living with HIV. We are currently surveying the present state of HIV treatment and care in Immigration Removal Centres to understand where there are still problems, and what the causes of these are. We will share our findings with the NHSCB to help them plan for the best possible HIV services for detainees in future.

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

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15/11/2012 10:30:56

How can I support my brother who is newly diagnosed?

resolve.

I’m a 28 years old HIV positive guy and I’m healthy due to my meds. My brother (36 years old) and was next to me from the very first beginning supporting me and advising me not to forget to take my meds on time etc. He’s a great brother! He is now in hospital and has problem with his breathing, his mental state; fungus in his mouth; and a fever. He has lost weight and hair and is generally weak. How can I help him, or is it too late? Soon we will have the results of CD4 amount and viral load.

If you don’t have symptoms, the decision is based on the result of a blood test called your CD4 count. This gives an indication of how HIV may have reduced your immune system.

Newly diagnosed? New questions?

Being diagnosed with HIV will leave you with many questions, so PN asked the I-Base website to look at some of the things that are most frequently asked. The website (www.i-base. info) includes an online Q&A service where you can email questions that will be answered privately. There are now over 800 questions and answers that cover a wide range of subjects. Should I start treatment immediately or very soon? I was diagnosed HIV positive last week and the doctor said i should start treatment immediately or very soon. Is that ok or should i wait for months? Thanks for your question. Hope are you coping? I ask this because finding out you are HIV positive is never likely to be easy, even if you thought this might be possible. It then takes time to the news to sink in. And while you are dealing with this it is difficult to take in other important information. So your doctor may be giving you a POSITIVENATION.co.uk 22 | Positive Nation

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little time to let the initial news sink in before starting you on treatment. The medicine is extremely effective, but only if you take it – and that means virtually every dose on about the right time. So sometimes it is better to wait a short time before starting treatment, until someone is ready and committed to making it work. The medical need for treatment is first decided on whether you have symptoms. Anyone with HIV-related symptoms is usually recommended to start treatment. The main exception is if the symptoms are in the first weeks after infection, in which case it is usually okay to wait because these will usually

Don’t get too worried about the first result. It is just a number, and there is a lot of variation between different people. In the UK, treatment is currently recommended when the CD4 count is around 350. Whether you start at 300 or 340 or 380 or 400 might not make much difference, but 350 is now the rough target. In the UK, about half of all new diagnoses are in people whose count is already below 350. In this case people will still do very well, but the lower below 350 your count is, the more important it is to start treatment. Some other countries, including the USA, recommend starting at 500 and some guidelines recommend even earlier, when someone is diagnosed, at any CD4 count. There are reasons for and against earlier treatment, but not a lot of information from randomised studies to help make the decision. Until the results from the START study come out in a couple of years, there is a lot of flexibility for the choice to be based on your individual preference. These recommendations are all made by experts and doctors after looking at the same results from the same research studies. So the higher the CD4 count, the more the decision is based on the interpretation of risk rather than definite evidence. If your CD4 counts is above 350, this gives you as the person taking treatment, and your doctor who prescribes it, a lot of flexibility to decide when starting treatment will be right for you. Finally, I have gone into this detail because the same words time can be interpreted differently depending on how you hear them. Any word about time needs to be backed up by something measurable like the numbers of days or weeks or months or years. One doctor might say “start treatment immediately or soon” and mean in the next few weeks or months. But you might hear this as “I need to start by 5 pm today”. Similarly a doctor might mean that s/he wants to start you today POSITIVENATION.co.uk Positive Nation | 22

but you interpret this as “any time in the next few months is probably fine”. Please talk to your doctor about what they mean exactly. Ask about the risks and disadvantages of your options. Without the results of your CD4 count the information here is very general. Your doctor is likely to be giving you good information, and you are good to get information from other sources, but ask your doctor exactly what s/he means. As many of the questions we get come from people who have been diagnosed late with low CD4 counts, you should be aware that it is possible. The sooner you start treatment though, the sooner it can start to work. Even people who start with a CD4 count under 50 can respond just as well to treatment and go on to lead full and active lives. Can my CD4 count indicate when I was infected? My first CD4 count was 34 and I want to know if this will help me know how long I have been HIV positive.

Any CD4 count under 50 show indicate that your immune system is already very weakened. HIV treatment is usually started the same week (or sometimes day) when the levels are this low. The good news is that though, you have been caught in time. It means that you can start taking ARVs (antiretroviral treatment for HIV) to keep you well. The treatment we now have for HIV is extremely effective even for people who start with a low CD4 count. It may take a year or two for this to reach 100 or even 200, but your immune system will be getting stronger all this time. What has your doctor advised? You will need to have a full check-up – including having your eyes checked – until your count higher. Your doctor should also recommend an antibiotic called cotrimoxazole (Spetrin, Bactrim) until your CD4 count gets over 200.

I’m very sorry to hear about your brother’s recent diagnosis. This must be a very stressful time for both of you. It’s great that he has you there to support him especially as you have your own experience to help. It’s also very positive that he is in hospital and receiving the care he needs. Until you know your brother’s CD4 count and viral load it’s difficult to say whether the symptoms he is experiencing are related to HIV or not. The doctors in the hospital will run tests to try to identify any infections your brother may have. It sounds though like he might need to start treatment. As you know, HIV treatment is very effective, even in people who are diagnosed late. So even if your brother’s CD4 count comes back low you shouldn’t see this as being ‘too late’. Even with a very low CD4 count, if he follows treatment very carefully, he has a good chance that treatment will work. His viral load will drop and his CD4 count will rise to safer levels. Your brother is very lucky to have somebody to support him who understands HIV from a personal point of view. Having somebody to share the experience with.can make an HIV diagnosis much easier to deal with.

It is not possible to find out when you were infected using one CD4 test result alone. This is because HIV progresses at different rates in different people. The normal CD4 count range for CD4 counts without HIV is between 400-1600. A ‘normal’ CD4 count for an HIVpositive person is getting above 500. This is an ideal goal although many people remain well and healthy with CD4 counts that are below this. In general though, CD4 counts tend to drop over time when someone is not on treatment. Although the rate at which they drop is different for each person. And this makes it even harder to estimate date of infection. POSITIVENATION.co.uk

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